Personal experiences of coccyx pain in 2002

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There are more than 2,000 Personal Experiences here, and it can be hard to find exactly what you want. Here is a way to search through them.

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Ian, UK - Update - My surgery

Mary-Anne - Update - Post-Coccygectomy Success Story!!!!!!

Jon Miles - Update - Outer ear pain related to coccyx pain

Gary - Update - Spinal cord stimulator implant

Amanda - Update - Endometriosis or scoliosis relationship to tailbone pain? - now had surgery

Lori - Update - Just had surgery

Susan - Update - Broken shoe caused a fall downstairs

Anonymous - Update - We all heard my tailbone crack during childbirth

Madams - Update - Severe coccyx pain

Andy Strange - Update - Boil on the coccyx

Diane Kramer - Update - They told me this was all in my head

Michelle - Update - Decided to jump right to the surgery

Marie - Update - Pregnancy and coccyx pain

Anne - Update - Frustrated with testing

Sue Buckley - Update - A real pain in the . . . .

Jamie - Update - Puzzling x-ray

Linda Terry - Update - I'm ready to get rid of it!!!!!!!!!

Nicole - Update - I am terrified of having surgery . . . . now had it, a complete success!

Les - Update - Coccyx woes in Aviano, Italy

Trudy - My history of tailbone pain and surgery

Ronda - Change in weather causes severe pain

Alison E Beach - A new sufferer writes for support and ideas......

Rayne - Update - Very long tailbone

Kristen Beinlich - Tailbone removed November 5th

Karen - Coccyx does not show on x-ray at all

Chandler - Bike ride started the pain

Anonymous - Pain and bump in coccyx area

Anonymous - Coccyx pain slowly got better after treatment by a chiropractor

Jen - Burning and numbing feeling after surgery

Anonymous - Finally some relief!

Lesley Fulton - Update - Still waiting and getting frustrated

Judy - Tail bone pain and Crohn's disease

Carole S - Drugs and physical therapy don't help me, doctor advises against cortisone

Martin Sheets - Anyone with experience of Prolotherapy?

Christy - Update - Injections helped, but not enough, so now had surgery

Barbara - No relief in sight!

Anonymous - Arthritis of the coccyx treated with steroid injections

Karen - Coccyx removed, but pain was caused by Tarlov's cyst

Henrietta - Any after-effects besides pain after surgery?

Gina Parnell - Update - A continuous battle

David - Pain came on after back strain

Anonymous - Caudal epidural injection caused coccydynia

Ally - Update - Just had my tailbone removed 19 August 2002

Debbie - Tired of suffering from tailbone pain

Kat L - Fractured sacrum & T10 vertebra

Paul - Doctors in the Netherlands?

Lucinda - Tumor behind tailbone

Irina - Shots helped until one went wrong

Annette Haas - Update - Tailbone pains in Denmark ;(((

Amber - Pregnant with tailbone pain and sciatica

Tandra - Dislocated coccyx removed

Julie - To all tailbone ailers

Elizabeth "Betsy" S. - Magic sneeze

Mike Rutland - Thanks!

Jim MacKay - Shoulder pain

Ian Hobson - My injections

Amanda - Jumping into water caused tailbone pain

Silvana Sdao - Looking for Dr. Lithwick or his patients

Bob Knetl - Update - Neurontin and Sarapin relieved pain

Anonymous - Tailbone injured in water - complete recovery

Margaret Bennett - Estradiol relieves coccyx pain around menstrual period

Anonymous - Prolotherapy at NMS solutions

Alan - Update - What else? Tailbone pain!

Heather - Update - Pain returned after training for duathlon - now had surgery

Judy Grant - Coccyx is a sore point!

Judy Isaacson - Yoga for back and coccyx pain

Jenny - Tailbone HURTS!

Jennifer Kuykendall - Still waiting for relief

Anonymous - Update - Frustrating tailbone pain

Aimee - Coccyx pain and surrounding muscle spasms

Gail - Coccyx removed 5 weeks ago

Anonymous - Sore tail bone started with a shoulder injury

Susan Seago - Oyster shell supplement causing tailbone pain?

Kim - No injury, but very painful going from sitting to standing

Gina - Coccyx broken twice

Anonymous - Ice hockey injury

Marilyn Dyck - Tuina massage therapy

Glynda Wells - Should I try manipulation or go ahead with surgery?

Craig Banks - Manipulation by chiropractor stopped the pain

Carole - Going to have injection

Mary - Had surgery in 1997...still in pain....but holding on to hope....

Martin - Update - Injections with manipulation - piriformis syndrome?

Laurie Teplitski - I have not sat down for the past year

Kristi - Surgery provided some relief, but still have pain

Kathy Ovide - Had coccyx removed - great results!

Cathy - Update - Tailbone pain, doctors stumped

Anna - Coccyx relief office chairs

Wanda - Just started having pain

Tonya Owen - Coccydynia with leg pain and weakness

Kim - Coccyx fused and angled upwards

Ayishah Williams - Coccyx pain and pregnancy

Tamela - Had surgery - tailbone was barely attached

Anonymous - Coccyx pain caused by stress

Mercedes de Miguel - A good night's sleep

Judy Royle - Update - Pregnancy stopped the pain

Anonymous - Slipped getting onto a stationary bike

Anna - Coccyx attacks

Amy - Four months pregnant

Abdulla Almorran - Coccyx pain much better after cupping

Scott - Treating coccyx injury with acupuncture?

Ericka Walker - I really don't know if this is the case with me or not, but...

Stef - Update - Tailbone pain and lump

Dawn - Pain with no injury

Kate - Tailbone removed 17 years ago - worth it, but pain now getting bad again

Anonymous - I did it on my HealthRider!

Samantha - Injection caused more problems!

Nana - Update - Impending surgery - now had it

Gracie - Need to find a professional

Cathy - Strange complications/infections since surgery

Dominique Bazin - Coccyx removed in Paris

Jim M - Coccydynia after laminectomy

Jeff - Coccyx surgery

Emily - Dana, we're in the same boat!

Debbie - Can't sit

Connie - Riding a bike 6 months after surgery

Amy - Injury 12 years ago

Pat - Help wanted and needed

Marcel - Long term pain in coccyx, awaiting surgery

Iris Peakman - Coccyx trouble or tarlov cyst?

Cynthia - Update - Started after miscarriage. Seen 18 doctors, finally had coccyx removed

Barbara - Finding a surgeon who has a clue!

M O'Brien - Any link between coccyx injuries and IBS?

Michael K - Sacro-coccygeal pain

Jane - Acute pain when standing up after sitting

Mary - Coccygectomy solved one problem but created another

Hantzel - Lacrosse injury

brstotts - Acupuncture helped eventually

Sue Thompson - How I help my Coccydinia pain

Marie - Sixth lumbar vertebra

Jean - Painful coccyx bone

Frederick Darrah - Update - It's TENSION, folks

Christina - Childbirth and broken tailbone

Misty - Update - Mystery pain was caused by a broken tail bone

Dana - Rear-ending caused coccyx pain, had surgery

Dan - Lump around the tailbone

Bev - Tailbone pain from Tarlov cysts

Bettina - Childbirth after coccygectomy

Barbara - Low back pain

Anonymous - Sitting comfortably

Stephanie Spresser - Pain in the a*!#$

Lloyd - 12 year old with pain

Karen - Bowen Technique, Anybody helped by acupuncture or injections?

Charlotte A. Jagneaux - Searching for a treatment

Melissa Schlee - Update - Frustrated with tail bone pain !!

Geri - Anything I should do other than walking?

Alex - Activator treatment, Ossatron

Tina Nakai - Looking for a good doc in Los Angeles-South Bay area

Lisa Marie Andres - A long-term solution for a sore tailbone that worked great for me!

Leonie - Sharing is helpful

Jeff - Unusual symptoms?

Anonymous - Hypericum for pain

Anne - Physician in Seattle area

Glenda - Update - (No longer) waiting for approval from insurance agency

Donna - Update - Coccyx bent forward at a 90 degree angle

Sue - Need information

Michelle - Coccydynia or pilonidal cyst?

Mark - Unknown cause with bad symptoms, in Canada

Debra L Mahood - Use of Neurontin for tailbone pain

Lisa - Doctor thinks I'm hallucinating

Vicky Harrison - Dislocated coccyx

Lorraine - Update - Coccygectomy

Lisa - Surgery imminent

Wendy - Prolotherapy or corticosteroids

Sue - Is this normal?

Shellie Golden - Update - Having surgery January 16-

Ronald Sabourin - Looking for an orthopedic surgeon

Kelly - Mountain bike accident

Denise Rendon - It didn't hurt till about 8 years after the injury

Sandra - Ibuprofen and physical therapy didn't help

Lourdes - Painful bump next to coccyx

Todd - Read this book

Robin - Hard knot at top of tail bone

Robert G - Update - Injured my coccyx while tobogganing - tried acupuncture

JR Kelley - Long tail bone

Chuck - 14 months post accident

Maria - Update - I've had the op, now let's hope I've lost the pain

Gayathri - Specialists in Seattle?

Colleen - Four-year-old with protruding tailbone

Anonymous - Update - Pain came back after 35 years - Cranio-sacral therapy?




Coccyx pain much better after cupping

Abdulla Almorran almorran1@hotmail.com

I am 44 year old male. In 1998 I injured my coccyx as I fell down in my office (I stood up to pick a file, the chair moved back which I did not noticed and within seconds I badly fell on my coccyx on hard office floor). The pain was unbelievable.

This is the medical specialist's report about my condition:

"The clinical picture indicates coccygeal injury. X-rays of the coccyx show an anterior displacement of the distal coccygeal segment. On top of that, the patient must have strained his lumbo-sacral spine. Examination confirms lumbo-sacral tenderness. There is no neurological deficit. CT scan showed no disk prolapse. The patient should persevere with his physical therapy program and continue his exercise and should refrain form long sitting positions" (5th October 1998).

For the past 5 years, I went though physical therapy program, spine rehabilitation exercises and have been sitting on air ring cushion all the time. I felt much better, but due to the nature of my office job, I did not refrain from "long" sitting positions! The pain in the tailbone area came back but very severe. I went back to the same specialist and he submitted the following report:

"This patient complains of low back pain with coccydynia and also complains of left thigh radiation of pain, with sensory changes affecting the left leg. The patient also admits heaviness and tightness affecting the left knee at the posterior aspect with notable swelling. Examination showed that the left knee has a full range of motion but he has a Baker cyst* posteriorly. Neurological examination of the left leg was within normal range. Examination of the lumbar spine showed tenderness over the coccygeal area. Recent plain x-ray of the coccyx showed persistent subluxation of the coccyx. The patient should take care not to sit or stand for lengthy period of time." (5th June 2002).

I have now resumed my physical therapy program. As I can move around, I was advised not to go for the operation (remove coccyx). I think I have to live with this situation.

On 2nd July, 2002, I had an 'Islamic cupping', and I feel much much better. I can now sit for longer periods without pain around the coccyx area. I am very happy for this improvement In my medical condition. I will keep you posted of any development.

Thank you again & regards.

Abdulla Almorran

Kingdom of Bahrain

*From an arthritis web site:

What is a Baker cyst?

A Baker cyst, also called a popliteal cyst, is swelling caused by knee joint fluid protruding to the back of the knee (popliteal area of the knee). The name is in memory of the physician who originally described the condition, the British surgeon William Morrant Baker (1839-1896).

What causes a Baker cyst?

Baker cysts are not uncommon and can be caused by virtually any cause of joint swelling (arthritis). The most common form of arthritis associated with Baker cysts is osteoarthritis, also called degenerative arthritis. Baker cysts also can result from cartilage tears (such as a torn meniscus), rheumatoid arthritis, and other knee problems.

Updated 2002-07-07




Coccyx pain and surrounding muscle spasms

Aimee - Aimeescottnyaz@aol.com

Hi, I am so glad that I found this website to know that I am not alone with this. However, I see that most people are complaining of pain in the coccyx, and no one is stating that they have pain in the surround muscles.

My pain started about 6 months after I gave birth to my second child. The birth was quite easy and there were no complications. I just started having severe pain in the rectal area. I finally went to the MD thinking that is was sciatica since I did have some pain shooting down into my legs. I went through a course of anti-inflammatories and physical therapy. I knew from day one that they did not know how to help me because they were insistent that they pain was related to hip and just basically gave me exercises to do. I gave up after a few treatments because they were not listening to me about where the pain is.

Then I decided to try the chiropractor. While he did seem to help with some of the pain through ultrasound, massage (minimally) and manipulations, he was unable to alleviate the bulk of the pain. So he sent me to a pain specialist. As soon as I mentioned the pain in my coccyx area, he did a manual examination and put his finger right on the spot that hurt and diagnosed me with coccydynia. He recommended NSAIDS and muscle relaxers and some pain medications. It did not work. So we did the cortisone shot around the coccyx. This did seem to work for about a year, but now the pain is back but different. It seems to be more muscular and massage relieves it temporarily (like 10 minutes). The pain wakes me up every night and I have difficulty walking or biking. I do not have the unstable bone and do not need surgery, thank goodness, but I was wondering if anyone else was having so much trouble the musculature surrounding their coccyx.

I work with handicapped children in their homes so I spend a lot of time on the floor with my legs extended while I work with the children and sitting a lot in my car. I saw website for a wedge (sacro-coccyx) but now I can't seem to find it and was wondering if anyone had tried it. Apparently you lay down on it for like 10 minutes at a time.

Please help if you can.

Aimee

Updated 2002-09-08




What else? Tailbone pain!

Alan - newjerseydc@prodigy.net

Original posting, 2002-09-01:

I've been dealing with this coccydynia for about 4 months. Can't say I'm enjoying it. The symptoms I have seem to be typical of other folks posting here...pain while sitting, worsening when going to stand, severe when sitting too long, etc. I've tried the wedges with the sacral/coccygeal cutouts in back to no avail. I'm now considering the journey to the old doctor's office as well as some other more conservative measures.

Do you know of anyone who has purchased a chair with a coccyx cutout at the back? I've seen these office chairs on a couple of websites but am skeptical as to their effectiveness. I sit for a living (I type medical reports) so I'm sure you can imagine what an inconvenience this pain is. I've tried typing standing up and I can't type nearly as fast as when seated.

Of course, any other advice folks may have for me would be most appreciated.

Update, 2002-09-14:

Hi Alan,

I purchased this office chair a few months ago. It has made significant diffference in how much I can sit to work. I own a magazine and for 10 days each month I'm at my computer 14 to 18 hours a day. The second picture shows my standing set-up for work. Anyway, this chair has allowed me to rest my feet and legs for 10 to 20 minutes at a time. It really helps with the heel pain I developed because of standing so much.

Hope this helps...

Linda

coccydynia since 11/1999

chair with coccyx cut-out

keyboard riser




Activator treatment, Ossatron

Alex - archaney@earthlink.net

I have been experiencing pain in sitting since March of 2001. The pain is especially severe when I move from a sitting position to a standing position. There was no fall or other injury, it just started hurting. I am an accountant and I go to school at night, so I sit a lot. In September of 2001 I finally went to an orthopedic doctor for treatment. He took x-rays and said they looked normal. He diagnosed the condition as being a soft tissue injury something like tendonitis. He recommended that I sit on doughnut cushions and said the condition would take a long time to heal.

The cushions helped ease the pain a lot, but did nothing to heal the condition. If I sit in a chair (especially a thinly padded flat chair) without a doughnut the paid is as bad as ever. After several months of trying the cushions with no improvement I decided to try a chiropractor that uses the "Activator" method I have read about on this web site. I went through a total of eight Activator treatments over a period of 4 weeks and saw no improvement. I had an MRI done today to check for anything like a cyst.

I have seen a video for a device called an Ossatron that has been approved by the FDA for treating chronic heel pain. This device delivers several thousand rapid shockwaves to the area and the clinical trails say it promotes healing. The device is now being considered for treatment of things like tennis elbow. I am wondering if this device can do the same sort of thing for soft tissue problems around the coccyx. Is anyone here familiar with this device?

Alex

Note from Jon Miles - The Ossatron sounds similar to the device described on this site under Possible future treatments. Here is a link to the Ossatron.

Updated 2002-03-17




A new sufferer writes for support and ideas......

Alison E Beach - alisonelizabeth@supanet.com

Hi, I'm Alison and I have suffered coccyx pain since October 2001, 14 months ago. It came on simply through sitting for long periods at a computer, doing a training course which included working towards several typing exams. I was concentrating so hard that although it felt as if I was cutting off the circulation to the back of my legs resulting in pain in my bum, I just continued, thinking it would clear up during the next holidays, .. then the next.. then the next.

I spent hours and hours laying on a sheepskin rug on the floor, but that left my back stiff and sore and I sprained one hand repeatedly getting myself up from the floor. At the end of the course I thought it would clear up once I stopped typing frequently, and so on, but it didn't.

I have been on continuous anti-inflammatories probably for 10 months. Early November I had injections into it under an epidural, but it is no better. I feel odd even sitting on a chair with a cut-out at the back, as if the backs of my legs are really sensitive to anything I am sitting on. I am only comfortable lying down. I bought a settee so that I could lie down, but this gives me neck pain as I have to turn to watch TV. I manage in the car with a foam cushion. I have been out of work for 2 years having retired from nursing on health grounds - other problems - and though I now have further qualifications I cannot do the job I have retrained for because I cannot sit down comfortably at a computer, and am applying for standing-up jobs. I dread starting a job and finding I cannot cope because of my pain.

I have lumbar back pain already and an arthritic right knee so a kneeling chair is not an option. I just want some support as I am feeling so miserable. I have this week been to see my chiropractor who wants to see X-rays before she tries manipulating my coccyx. She says the coccyx may be twisted, as my pain is definitely worse on one side on examination. Does anybody else have a similar 'tale'?

Alison E. Beach

Updated 2002-12-22




Just had my tailbone removed 19 August 2002

Ally - Tanziblu@aol.com

Original posting 2002-09-01:

I'm so happy I found your web site before I had my surgery. It allowed me to see good and bad results before making my decision.

My tailbone started hurting in April, 2001, just as a slight nagging pain. Two months later it became an unbearable burning pain, but only when I had to sit. I went to my Family Med, Doctor in June 2001. My regular doctor wasn't there and I saw a resident.

Before doing an x-ray, he wanted to "push" on the area. I almost went through the roof. He said it was "movable" and he was sure it was fractured, but they'd do an x-ray to confirm it. I am friends with the technician who did the x-ray. He asked me if they told me they thought it was fractured and I said yes. He's not really allowed to tell me results, but he let me know in a round-about way that he could tell it was fractured too. (He's been doing x-rays for 30 years) The resident told me there was really nothing they could do for me except put me on Vioxx and check me again in one month. I also bought my donut pillow that same day.

One month later I returned to my doctor. He said there was a mistake and that the Radiologist Doctor read the x-ray the day after I had it done and found no fracture!

My doctor is very sympathetic and kind, but said he couldn't contradict what the Radiologist said. He decided to send me to the pain therapy department for trigger point injections. I don't want to scare anyone, but they hurt really bad. After about four injections and only a tiny bit of relief from the pain, they decided to put an I-Flow Pump in me. This is a tiny catheter that is guided to the tailbone area though very small incisions. The line is then run under your skin from your tailbone to just an inch or so above your buttocks. This is connected to a bulb of numbing medicine (about the size of an orange) which your wear around your waist in a fanny pack. When the pain gets bad, you open the bulb and the area is numbed. Only problem is that it makes your legs numb also. I had to go back to the clinic every 3-4 days to have the medicine bulb replaced and have the catheter site dressing changed. This was, as you can imagine, very inconvenient. They can only let it in a month as risk of infection is high after four weeks. They say this can sometime "break the cycle" of pain. It didn't.

My next treatment consisted of three months of Ultrastim and heat therapy with a physical therapist. It was basically nice during the treatment, (no pain from this procedure) but pain was only relieved by about 1/3 and that only lasted one to two days. They then bought me a TENS Unit. I found that electric feeling in such a delicate area more than I could stand, even on low settings. By this time, they seemed to think I was just going to have to give it another six months and maybe it would go away by itself. It didn't. After 15 months of severe pain, they FINALLY ordered an MRI. They found an incredibly hooked tailbone, a piece of "floating bone", and a small aracnoid cyst in my spinal membrane. A trip to a Neurologist calmed my fears about the cyst. He didn't think it was the cause of my problem but they will do an MRI in six months to make sure it didn't grow.

Now I finally got to see Dr. Parenti in Orthopaedics at Geisinger Medical Center. He said he was 99% sure he could fix this for me. He's the only doctor there who does this procedure, and he only does 3 or 4 a year. I had the great advantage of working with him for 13 years at an earlier date and trusted him completely. He took the time to show me the x-rays showing how deformed my tailbone was. That was the first time I saw the x-ray and in my mind it clinched the need for surgery and verified this pain was not "all in my head".

I checked into I&O Surgery on 19 August 2002. The surgery took about one hour, from 8:00 to 9:00, and I was recovered and ready to leave by 12:00 noon. My Mom drove me home. She has car seats in the front that lay all the way back. I was in NO PAIN when I left I&O because they inject the inside of you with lots of novacaine while you're under anesthesia. My insurance company would not pay for even one night stay for this procedure so the doctors make sure you are numb when you leave for the ride home. This glorious numbness lasted about 10 hours. Then the pain hit! He gave me strong painkillers, which helped, but didn't give me as much relief as I wish I could have had. The really unpleasant part is the stitches that pull every time you move. I stayed at my Mom's for a week so I wouldn't have to go up and down steps.

Now today, 28 August, I've had my sutures removed and feel MUCH better. Suture removal was not at all bad, but I did take my pain medications before going. The doctor said my incision healed very clean and looks great (no open spots). I do have to be careful for the next few weeks so I don't split it (which is unusual after a clean healing, but can happen). He pressed on the area which always sent me through the roof, and I could already tell a difference! Of course I'm still having some pain, but it's a different, surgical type of pain. He said my tailbone was really hooked and prominent and he's sure I'll feel much better now that it's gone.

Update 2002-09-08:

Yesterday (September 02) I sat on a very soft couch for about 5 minutes, and again today for 5 minutes. To other people that might not sound like much, but to someone like us, it's a big accomplishment. I've had many people who prayed for my surgery and recovery and I give God the credit for my great progress. I also can walk up and down stairs, but I do it slowly and very carefully.

Update 2002-11-17:

I had my tailbone removed 19 August 2002. One week ago I was able (for the first time in 18 months) to sit down in a restaurant without my donut pillow! It was a great accomplishment for me. I did change my position a few times, and had to sit with my leg under me occasionally, but I did it!

The place where the tailbone was does not hurt anymore, but the bone left behind that they had to file to a suitable new shape does still hurt. My oxycontin was just reduced from 40 mg twice a day to 30 mg. twice a day. Next month we will try 20 mg. I just saw my doctor last week and he said it is normal to have this pain and it can take 4 to 12 months to totally recover. He also said I may still have some sutures inside which have not yet totally dissolved. Whatever result I have on August 19, 2003 next year will be the final result.

So far, I still am happy I had the surgery, but the first ten days afterwards were really tough. I'm not saying that to scare people, but to help them prepare for help at home afterwards and to realize that it WILL get better.

Also, anyone having this surgery should be on stool softeners for about four days before surgery and continue afterwards as long as your doctors suggests. This is very important as the pain killers will constipate you and the last thing you want with stitches that close to your butt is constipation. I followed my doctor's advice and can say that the first BM was not anywhere near as bad as I thought it would be. Hope I haven't grossed anyone out with this. Just remember, knowledge is power.

Take care and Happy Trails to all,

Ally




Jumping into water caused tailbone pain

Amanda

I injured my tail bone two months ago while on a scuba diving trip. A couple of days before we came home a bunch of us thought we would go swimming and jump off the top of the boat into the water for fun (about 20 – 30 feet high). As soon as I got out of the water I knew something was terribly wrong. I could not sit down without excruciating pain. Needless to say the 4 hour flight home two days later was extremely uncomfortable.

After dealing with the pain for two weeks I went to see my doctor. He took x-rays of my tail bone and concluded that it was just bruised. I am an administrative assistant therefore I have to sit down all day. Your site and advice from fellow coccygodynia sufferers has helped me greatly. I follow most of the advice given, I sit on my knees, sit on one buttock, have a timer at work to ensure that I get up and walk around every 20 – 30 mins, and I have designed several cushions among other things. I am still in considerable pain when sitting, and when going from sitting to standing up, and will be going to see my doctor again next week.

I wanted you to know how grateful I am that I found your site, it has been tremendously useful. I made my husband sit down and read the information as he seemed to find it rather funny that I hurt my butt and can't sit down. He now has a new appreciation for my ailment!

Thanks,

Amanda

Dallas, Texas

Updated 2002-09-29




Endometriosis or scoliosis relationship to tailbone pain? - now had surgery

Amanda - amandafe@sympatico.ca

Original posting, 2002-10-13

I have had pain on the tip on my tailbone when sitting or getting up from sitting for about 3 months now. I am a 24 year old female: no accident, no childbirth. My doctor did an x-ray and after seeing no abnormality recommended a donut pillow and anti-inflammatories that have helped somewhat, but I don't want to use them forever!

I do have endometriosis and have heard that there can be a relationship but have not been able to gain any information. I was also told at 16 that I had mild scoliosis and have heard that this can be related to tailbone pain too but cannot find info here either. If anyone can help with their experiences and information sources that would be great.

Amanda

Update, 2004-10-24

Winter 2003

I struggled through the days with a donut and NSAIDS for 6 months. Vioxx was giving me considerable intestinal grief daily. I decided I had to leave my desk job, which meant my husband and I had to relocate to another part of the province taking him away from a job he loved. Our whole lives changed and without work every day I became depressed. I stayed off my butt as much as possible since my GP told me this was the only way to cure the pain.

Summer 2003

I traded in my donuts for a wedge cushion I bought on the Internet. I tried naturopathic treatment with no luck. I saw a chiropractor 3x a week for 3 months. I had laser, Chinese and Japanese acupuncture and adjustments from head to toe including 1 internal adjustment (ick!). I had a Laparoscopy to investigate the possibility that my Endometriosis was causing the pain but the surgeon saw no evidence of this. He prescribed Bextra. While my conservative GP was on holidays my husband and I strategically made an appointment to see his fill in. He said I had a hockey stick coccyx and ordered a bone scan (normal), white blood cell scan (incomplete) and prescribed a week of Prednisone, which provided short-term relief. I demanded a referral to the pain clinic despite my GP's feeling that it wasn't warranted.

Fall 2003

A cortisone shot into the joint gave me increased pain for 1 week and then back to normal. The second cortisone shot went into the "area" and hurt like hell. I may have seen improvement for a day. Feeling I may never find relief, I broke down and bought 2 coccyx cut-out chairs- well worth the $. I had a normal CT scan and was told an MRI was too costly for my mild condition. Bextra was now causing intestinal upset and narcotics were prescribed which limited my ability to do anything so I lived with the side effects of Bextra instead.

Winter 2004

In desperation I was induced into chemical menopause via Lupron to "prove" that the Coccydynia wasn't caused by my Endometriosis. Upon confirmation, I was finally referred to an Orthopedic Surgeon who on April 1 2004 agreed coccygectomy was the only thing left to try. My supportive husband finally burns out and falls into depression himself.

June 15, 2004 "The Big Day"

I am terrified but everything goes as planned. The pain is worse than I expect. I am released from hospital 2 days later and ride 2 hours home in the back of a van. My surgeon tells me to do whatever I want that doesn't hurt and expect 6-12 weeks recovery and 3+ months for the pain to subside. My wound is already nearly healed.

July 1, 2004

The first 2 weeks were dreadful. Allergies to narcotics, severe pain, no showers and a depressed husband all made for an extremely unpleasant time and I literally stayed in bed except for using the toilet. Finally I was prescribed Hydromorph Contin, which worked well with no side effects. After 16 days in bed I rejoined the living and my husband presents me with the devastating news that he is not happy and may want to split up.

July 9 2004

My incision is nearly invisible. I try to walk every day and I have even been out for dinner (standing). I am off narcotics and taking only Bextra. I can't lie on my back but I can sit for a bit with my wedge cushion on top of my coccyx cut out chair. I can't believe I feel this good after 24 days and I feel very optimistic.

August 9 2004- 8 weeks post-op

I still need 40 mg of Bextra per day. I am going to physiotherapy and the gym. I go out for dinner regularly – sitting, no cushion- though on a soft chair it becomes uncomfortable quickly. I can drive for about 15 minutes with a folded pillow under my thighs and can ride in the passenger seat as long as needed just by shifting my weight. Working with a psychologist together and separately, my husband's depression is lifting. I think perhaps he felt guilty because he was angry that my coccydynia was holding him back. I think it can only get better from here.

September 23 2004- 14 weeks post-op

With Bextra +Pennsaid + Physio treatments I was able to return to school full time this month as scheduled. My husband has recovered right along with me and we are the happiest we've been since before we had ever heard the word Coccydynia. I can sit for a couple of hours on a firm surface. My overall condition now is similar before the surgery and my surgeon said to be patient- pain free days will come. I look forward to this with hesitant optimism.

October 4 2004- 16 weeks post-op

Yesterday I drove 2 hours and still had bum-power to go out for dinner on a hard chair. Things are getting better. I think I will cut back on physiotherapy to 2x per week. Twice this past week I have been asked by acquaintances if they could pass my name on to a friend who is considering coccygectomy. Isn't it funny that for 2 years I felt so alone but once you talk about it is amazing how many other people are suffering too. I feel great.

October 19 2004- 18 weeks post-op

Last week my pain increased and it seemed like I had stepped a month backward. I have had intermittent numbness in my feet since the surgery, which doctors interestingly say, has nothing to do with the surgery. As the pain increased, the numbness decreased. Anyway I "think" the relapse was temporary and I back on the road to recovery.




Pregnant with tailbone pain and sciatica

Amber - bestest_princess@hotmail.com

I am 24 years old and as of Oct. 7, 2002, I'm 30 weeks pregnant. I have had hypermobility my whole life (very loose ligaments) and pregnancy has enhanced this, causing lots of joint pain and instability - including very severe sciatic nerve pain in both hips, radiating down my hips.

This instability also caused a fall down the stairs a little over a week ago. I landed heavily on my bottom and have had severe tailbone pain since. Before the fall standing or walking or climbing was nearly impossible, due to pain, but that is now nothing compared to the pain of sitting down or getting up! My doctor (and physical therapist) are understanding, however, I cannot take any medications other than Tylenol while pregnant and they will not be pelvic x-rays until after birth - in this case there really is nothing they can do if it's broken until after birth.

Due to my combination of problems, I'm having an extremely hard time coping. I cannot stand for any period of time (sitting is more comfortable - except getting down and up, which are more painful), cannot really sit for long without making the pain worse than before, and cannot sit on a "donut" because it puts too much direct pressure on my sciatic nerves.

To make things worse, I cannot lay down comfortably, either. Laying on my sides crushes one sciatic nerve or the other, sleeping on my back is excruciating with the tailbone injury (it is not permitted in late pregnancy, anyways, because it cuts blood supplies to the kidneys and lower body). That leaves making a nest for my tummy and laying on my stomach and it is only mildly to very uncomfortable - but not painful, like the other positions.

My other fear/coping issue is linked to giving birth. I have a painful time with bathroom functions at this moment that I can't even fathom giving birth naturally. Granted, maybe other pain will over shadow it. I'm also worried about possibly hurting my tailbone more in labor.

If anyone has any experience with tailbone pain in pregnancy or this combination of tailbone and sciatic pain, I'd really appreciate any advice.

Updated 2002-10-13




Injury 12 years ago

Amy - ajdemers@hotmail.com

HI!

First of all, I am so glad to have found your website! I've been going to doctor's for years and no one has had a clue. Its nice to know that I'm not the only one suffering! Here is my story...

About 12 years ago, when I was 12 I fell off a swing and landed right on a rock. It hurt so bad for weeks but I never went to the doctor for it. It seemed to be alright up until high school. I had to constantly change my sitting position and it looked like I was being impatient in class. I never really thought about going to the doctor until I realized it was getting way too painful to go to the movie theaters, road trips to college, long college lectures, etc. Over the past 5 years I've been to a couple of doctors, and I just became frustrated with their inability to help me, so I gave up. I've tried cortisone shots (no relief), trigger point injections (made it worse), all types of drugs (which I didn't want to take for the rest of my life...and I was way too young to be having a medicine cabinet full of meds)....The pain has been a part of my daily routine for 12 years! Recently though, I'd say for the past 2 years, its been such a hassle. Sitting for interviews for work, meeting new people during a nice dinner...all these situations I would have to constantly change positions in my seat, which doesn't look like I'm being too attentive or interested.

Anyhow, SO...I'm an active individual...the pain has never interfered with my exercises or games (although I can't do some of the variations of the sit-up). However, last week I noticed that the pain started to affect my muscles in my right sacral region...basically the lower part of my butt. It became painful to do lunges, squats, swinging a softball bat, and even walking. I have had a doctor suggest removing my tailbone several years ago, but I was terrified of going through with it. Then this week another doctor suggested that it would help. The stories on this website has helped me seriously consider going through with the surgery. I'm going this week for another MRI and a bone scan first. I'll keep you posted on what comes of it......

If anyone else can help or has any suggestions please let me know...

Thanks,

Amy

Updated 2002-05-19




Four months pregnant

Amy - itsybitsychik@cs.com

I am 28 years old and have had severe tailbone pain for almost 8 years now. Last year I was diagnosed with Coccydynia. I am now almost 4 months pregnant and it seems like my problem has progressed now with pregnancy. Has anyone else had this sort of problem and what did they do about it?

Thanks for all your help

Amy, Texas

Updated 2002-07-07




Boil on the coccyx

Andy Strange - andystrange@tiscali.co.uk

Original posting, 2002-12-01:

I have had this condition recently. It started as a back pain. I had not fallen and injured myself. The pain got progressively worse over a period of 7 days. I was going on holiday to Spain so the day before my flight I went to my doctors. By this time a small boil had appeared on my coccyx. They diagnosed inflammation of the coccyx and suggested I take paracetamol and told me not to worry as the condition would cure itself after a few weeks. By this time the pain was so acute that I could only sit down with difficulty.

The flight the next day was a nightmare! The boil had increased in size by the time I got to Spain. I could only lie down in the back of the car and hope we could go to a hospital when we arrived at our resort. On the journey the boil burst. The pain then started to lessen the next day, but it took a further 5 days to become bearable. This was 3 months ago and now every 2 weeks or so I get mild recurring back pain. I have had to forgo cycling as much, though I did manage to buy a thick 'gel' cycle seat cover which lessens any impact on the coccyx. (£6.99 from Tesco). Stress seems to exacerbate the pain.

Perhaps the coccyx will evolve in to a useful appendage rather than being a pain in the backside.

Congratulation on your site. It's very informative, I found my GP experience to be a 'mug off', they knew little and did little to reassure me.

Regards, Andy Strange

Update, 2003-09-28:

I posted my story on the site originally back in December 2002. Briefly, I was initially diagnosed in September of that year as having coccydynia. Since then I have seen a doctor a further 4 times with a similar complaint. I saw a different doctor each time. It is only the last doctor, who despite a very poor command of spoken English, managed a correct diagnosis and was prepared to do something about it. It is of course a recurring pilonoidal cyst that I have had all along. I have an appointment to see a consultant surgeon for operative treatment, if necessary.

I would like to be (like 007) 'unusually well informed' before I keep this appointment with the sawbones. What are the risks? How long does it take to recover? Is the procedure carried out under general or local anesthetic? What is the success rate? Are there treatments other than surgery?

Regards ,Andy Strange




Coccyx attacks

Anna

Wow, I wish I knew about this website years ago. I have been having what I called "tail bone attacks" for at least 20 years but I do not live daily with the pain. My problem are sudden attacks that are triggered, I believe, from sitting on a hard surface for any period of time, often a bowel movement can cause an attack, or sleeping on my back (I often wake up with an attack in the middle of the night).

I find the only relief is a hot bath, which I crawl to when I get an attack and it takes it away quite quickly if I get there before the pain is at its peak. These attacks last about 20 minutes and after it is over, I am totally exhausted. I have had very few attacks at work thankfully but when I do get one, I have to lock myself away in a stall, stand and hang on to the stall walls and sweat it out until it is over.

Does anyone else relate to these attacks? I thought I was alone. Please someone tell me I'm not from Mars!

I had this problem checked about 15 years ago, and of course the examination triggered an attack which I got on the subway ride home. The doctor at the time told me he can recommend a pain killer, but he said that the problem was that it was more like a horse tranquilliser, and it will take until the attack is over before it works, and then I would be knocked out for hours. So I have lived with this problem since. I have mentioned it several times to my GP but it never gets dealt with, the doctor only listens sympathetically and hasn't recommended any treatment.

Anna

Updated 2002-07-07




Coccyx relief office chairs

Anna - l&abilek@dragonbbs.com

My name is Anna and I have suffered from coccyx pain since 1986 when I took a boot up my tailbone in marine corps boot camp. I was in a lot better shape then and was able to redirect the pressure while exercising and sitting, though sometimes I was in terrible pain.

Two c-sections and over 15 years later I still have persistent problems with this. I thought I was the only one and no one could understand the pain. I have done the injections that last about 5-6 weeks and have had multiple x-rays and it doesn't appear my tailbone has even been broken.

I control my pain with taking a donut shaped pad everywhere I am not familiar with the seating (totally embarrassing, but worth it). I recently returned to a sit down job and sit on the donut pad but, because I am not always sitting to the back of the chair, trying to sit on the pad it has caused significant pain in my mid back. They have offered to buy me a office chair that is for coccyx relief. The chair has an area cut out in the back of the seat where your tailbone would lay. I haven't gotten the chair yet. Does anyone out there have a chair like this? I would like to know if it has helped at all.

I know, I have a long life of trying to control this pain, but I am not having my tailbone taken out. I have had 3 foot surgeries and wish I have never had one. I really feel for the people who are worse off than me and hope that my pain remains somewhat controllable with the pad, anti-inflammatories and vicodine (if that is control).

Updated 2002-07-28




Physician in Seattle area

Anne - w.peterson@verizon.net

I need a good physician who has had lots of experience in the field of coccydynia, and of removal of the coccyx. We are in the Seattle WA area, but could also travel to Toronto, Canada.

Anne

Please contact me at w.peterson@verizon.net

Updated 2002-03-03




Frustrated with testing

Anne - ann8919@hotmail.com

Original posting 2002-12-08:

I have been hanging out here for at least a month now as I continue to suffer from coccydynia like all the rest of you. I actually started out hanging out at the www.pilonidal.org site because when all of this started I wondered if I had a recurrence of a pilonidal cyst which I had had 4 surgeries for when I was a teenager (I'm now 36). I got the link to this site from there.

Anyhow, my pain started very insidiously, just ached with prolonged sitting and then with getting up from sitting. It has gotten to the point that it is really hurting the most when I get up from sitting. I have to be careful how I sit down although because I feel this wierd pressure-type sensation and pain. I do not really have a lot of pain while I am sitting unless it is for a long time like more than an hour at a time. It even hurts to tighten my gluteals.

I have been evaluated for a pilonidal cyst which I do not have. I have been treated for cellulitis of the sacrum with no relief. I have seen a surgeon who could only find a split in my old pilonidal scar which healed up with some cream after 2 weeks. Still no relief from the tailbone pain. I have had a CT of the pelvis which only showed chronic inflammation around the coccyx. I have had x-rays ( I tried to get a dynamic x-ray done to no avail) which were normal. I am now waiting on an appointment with an orthopedist that is scheduled for February with the probability of corticosteroids injections into the coccyx. I have been on NSAIDS and Ultracet for pain, not to mention some homeopathic treatments, with no significant long term relief.

The weird thing about all of this is that every once in a while the pain will disappear suddenly and completely for a few minutes or sometimes for several hours or even a whole day only to return again just as severe as before. I really think I have a dislocating coccyx, that seems to make the most sense to me. I also have fibromyalgia which sometimes has caused me to question my own perception of all of this, but it has been too persistent and too localized to be solely from that not to mention that fibromyalgia does not cause inflammation which the CT did show.

So.............that is where I am at. Anyone else out there sound like this? Any info and or support would be greatly appreciated.

Thanks Anne

Reply from Bonnie, BonBillNethers@aol.com, 2002-12-15:

I am responding to Anne who says she is frustrated with testing. I feel the same way. I have had pain with my tailbone since last April. I have had x-rays and recently had an MRI done. Both test results say everything is normal. Now my question is what is causing the pain?

I guess my answer to Anne is yes I have had the same things happen to me and I really don't know where to go from here. I know it isn't in my head.

It hurts to do any housework such as vacuum. I went bowling yesterday with my grandchildren and today it has made me hurt worse. Where do you go after you have had an MRI done?

Thanks for any advice. Bonnie

Update from Ann, 2003-04-06:

It has been 4 months since I originally posted but I do have some news to report. I saw an orthopedist in early March. He was concerned about the fact that I had "nonspecific inflammation" around the coccyx on a CT I had done in Oct 2002. So he wanted to get a MRI to make sure there was not any underlying infection going on. Then the next step he said was to try a caudal block with steroids. So I did the MRI, which of course was normal, and I had the steroid injection this past Monday. It was suppose to be a caudal epidural, but my anesthesiologist wanted to get the injection between the coccyx and sacrum since my pain seemed very much coccyx related. He was also concerned that the caudal may be hard to get in easily due to my history of pilonidal disease and potential scar tissue there. Anyhow, the steroid injection into the joint went much easier than I thought it would. The worst part was the local anesthetic and the injection seemed to cause a muscle in my left gluteal to spasm briefly, but considering how bad I had it worked up to be in my mind....it was a breeze. I was basically pain free when I left the surgical facility, took a whole 10-15 min.

I was sore later that night and the next day, but the actual pain the coccyx that I have been dealing with for 6 months was gone. No pain with getting up from standing. I still have a little achiness with prolonged sitting. I would say my pain is probably 95% better right now. So wish me luck that I am on the mend now!! They have warned me that of course I may need more injections, so I am prepared for that, but for now I am going to enjoy the pain free moments!!

Note from Jon Miles:

The standard x-rays and MRI scans usually show nothing when done on people with coccyx pain. But there are useful tests that can help to indicate the source of the pain - see Investigations.




Tailbone pains in Denmark ;(((

Annette Haas - akjersie@mail.dk

Original posting, 2002-09-29:

I am a Danish woman, who has suffered with tailbone pains since 1992, when I fell from a chair and broke it. In 1993 I unfortunately had a surgery, where the specialist removed only the broken part . . . which was 1 1/2 joints of 3 I have.

I have daily pains ever after, and now for 10 years. The surgery made it much worse. I have tried all the kinds of pillows we have in Denmark, but I haven't met ONE Dane who has the same problems as me. Local authorities, insurance companies and people in general, don't believe how many daily pains I have in my life. Not being able to sit down for 10 years has changed my life completely and caused me depression too. I have had to have a special couch arranged in our car, so I can lie down, when my husband drives the car. The only way I can be transported. I have a picture of the arrangements if any are interested. Other problems is the social life, which disappears. I can't go to cinemas, theatres, family parties and other social things.

Hope I can get help from the people, who know what a HELL it is to have these kinds of pains, and how it can change your life completely. I am interested in all kind of advices, pillows to buy, chairs, medicine, herbs medicine...whatever.....and maybe talk to people (or email) with the same 10 year's tailbone problem ......I think it will helpful if any other than me has been through the same as me, and tell me ;(((

I think I am the only one in Denmark having these problems and pains, and it's NOT nice to feel this way. HELP!!

Best regards, Annette Haas - Denmark

The full story, posted 2002-10-13:

I will try to tell you all about my coccyx story from the beginning in 1992 till now. I hope you understand most of my English - remember I am Danish and have been in Denmark all of my entire life :0) So here it goes:

I was born in 1951 in Copenhagen. I started my education after my last year in school in 1968 as a book-keeper (Finance) and a secretary, and have educated myself with other subjects over the years regarding Finance, Leadership , Organization etc. etc. I have been working from 1969-1990, most of the years in an American Medical Company called UPJOHN. When I was about 18 my neck problems started . . . etc, etc. I will try to describe my surgeries:

1971- After X-rays of my neck doctors found out that one of my bones in my neck was too long, so it made pressure on the nerves down in my left arm and fingers. I had a surgery, where they moved a cervical muscle instead of cut in the bone itself.

1972- I still had a lot of pains in my neck, so another hospital tried to give me a special kind of X-RAYS . . . ..they took out cerebral fluid and blow in air . . . so they could see the damaged disc in front of my neck. When they blow in air . . I thought that my head would explode. It was very painful. I had a dangerous and huge operation in February where they drilled out the bad disc and operated a new bone in between the two exiting bones, so when it healed, I had in fact ONE BIG bone, instead of three. I had to wear a special "collar" made of foam for several months to protect my neck.

1989 I had had a lot of problems with my left knee for years, so at last I got my first arthroscope examination in my knee. Doctor meant that I had arthrosis in 3rd degree.

1990 After arthroscope examination no. 2 - an Orthopaedist operated my left knee, and scraped out a lot of cartilage and took one sinew too.

1991-92 Three operations more in my left knee - again they scraped out cartilage. I walked on crutches for about 2 1/2 years, and lost my job because of too many days off from work - and received sickness benefits.

1992 I fall from an office chair in my own house in August , while I was writing my personal song for my future husband - with whom I married later that month. The pains from my tailbone started right after the fall, but I managed be married due to pain killers.

1992 Later the I had an X-ray of my tailbone, and I have to say that we in Denmark unfortunately just take the X-ray when people lie down, so the result was that I got the message: "Nothing abnormal". I did not understand because I had so many pains every day, but they "just" called it: Coccydynia, and gave me a "swim ring" to sit at.

1992/93 The rest of 1992 and in the beginning of 1993, I visited all kinds of specialists . . . my pains were indescribable . . and a lot of specialists tried to inject anti-inflammation fluid around and into my tailbone - with no relief at all.

1993 May: I required to see a specialist in Neurosurgery . . and so I did. Unfortunately this time I had no friend or family with me in the room, when I talked to him. I told him about my pains, shown him my X-ray pictures, and asked him if he thought it was broken. He thought that too, that it was broken, when I told him that I had the feeling myself after such a long time. (I have to say that we have surgeries made in public hospitals, where we pay nothing.. (of course we pay via our very high taxes in Denmark). This doctor had his own consultation, but were paid by the authorities- and only made examinations - no operations. Therefore I was very surprised when he suggested to operate me in a PRIVATE hospital, where I should pay the operation myself. (The explanation was that he rented some rooms at a private hospital, where he made surgeries for money). I asked him of course what the result would be - what the WORSE thing was, that could happen. He answered me: "The worse thing that can happen that your situation will be unchanged !" I asked: "That means that an operation will NOT make it worse?" He replied: "Most people get it much better, and some will get it better, and for some few the pains will be unchanged - but not worse!"

I went home and talked it over with my family ( I had a daughter at 11), and agreed that I had to try this operation and pay for it, when the promise from the doctor was that it could NOT be worse!!!!!!! Oh my . . . what a mistake !!!!!!! I have regretted this surgery ever after ;.(

I was operated in May 1993 and stayed at the hospital the entire day, where he operated me.

I was discharged in the evening, and then back home in my own bed. I used already painkillers, but had of course to supplement with STRONG CODEINE tablets. I had to stay in bed for 14 days, before I visited him again. He took out the stitches, and told me about the operation: He had ONLY removed 1 1/2 join - of the three tailbone joins I had . . . ..so he had cut right through one of the bones . . . ..as he said: " There I sat . . . .with 1 1/2 bone dangling in my hand!" I was shocked about his way of speaking, and that he did not operated the whole T-bone out. He said that I should be lucky that it was only a part of it ???!!!????

The next weeks, I still had to lie down and then at last got up and had to use my swim ring. I was very much in pain . . . .as all know . . . .this kind of pains NO ONE in the whole world will understand IF they have NOT tried it !!!!!!!!!!!

One thing I can say for sure: "THIS OPERATION MADE MY PAINS MUCH WORSE!!!!!!!!!"

Over the years after 1993, I have tried sooooo much treatment that I cannot remember them ALL. The pains are not only at the T-bone, but spread all over my buttocks and down in the thighs, where the muscles are like strings. I have to make a mix every day of standing up and trying to sit at all different kind of cushions I have tried, among other things with help from my local O.T. I have never found a cushion, which have helped me . . . so what I use now is 3 cutting outs made of foam rubber . . . .above each other . . .no good at all. I cannot sit for such a long time, and when I am going from sitting to standing up I get the extra pain (like an explosion) and I have to wait before I continue to walk or stand.

I am not able to sit in a car, so we have bought a station wagon, where I have had a couch made IN the car and installed there. I enclose a picture of it to show you all the smart installation. Here I can lie down while my husband drives the car, and he can draw my couch out, like a drawer :0) In this way I can roll out and put my legs to the ground. This is the way I get around since 1993 - and therefore I am always depending on some one can drive me. I have also got heel spur, fibromyalgia and arthrosis in my knees, finger and toes.

In 1994 I had to retire early (after many year's fight against the local authorities ) but I got the lowest payment because a painful T-bone is NOT accepted as an accident in Denmark !!!!!! I also got a very low indemnity from the insurance co., because of the same reason: It's only a tailbone !!! First the gave decided to say that I was just 5 % handicapped, but after 2 years, I managed to get it up to 12 % . . . what I am still not satisfied with. This T-bone accident and pains have changed my life completely.

I have had a lot of treatments over the last 10 years . . . ..here comes some of them:

Injections:

Medicine, Daily dose:

Twice I have been to a pain hospital, where they only take care of patients, who is giving up regarding pains.

First time was in 1995. I joined a so-called : "Pain course" for three months, i.e. I could not come and join all the lessons and training there, because my local authority would NOT pay for my all my transportation in an ambulance ( the only way to be transported here if you have to lie down). But we were taught how to handle pains by a psychologist and some doctors and had some training in a training room and hot water swimming pool. They tried also to keep our medicine down on a certain level. What I "learned" there was very useful to me: Most of the group suffered with back pains, so we nearly had the same problems in our lives and supported each other, but my medication was NOT good . . . .NOT before or after the course. They did not help me further, with that problem.

Second time I visited a Pain Hospital was in 2000. The doctor suggested I tried tablets against epilepsy (Gabapentin) . . . I tried these tablets with a lot of side effects but they did not help for my T-bone pains at all, so we stopped after some extra months.

Physiotherapy: I have one weekly treatment where the physiotherapist give me massage, manipulate me . . . .or use special techniques at my T-bone and back, buttocks and thighs. My back and neck are often locked in the joins and it is very painful. I have had a lot of MR-scans taken, but the only thing they explain to me is that they can see my T-bone is cut, and that I have a damaged disc between the last loin join and the next bone ( I don't know what it is called in English). Therfore I have been in bed this time for 14 days . . . ..because of the damaged disc worsen my pains in the T-bone area, and I could NOT straighten me up, so I had to use crutches. I could not exist if I did not get that kind of treatment every week. (Rather expensive . . . .but a MUST).

Alternative massage: If I can afford it . . . ..I go to alternative massage, and have my ENTIRE body massaged with oil. It really effective to relax the muscles and get rid of the "waste products". I feel like a "butterfly" for some hours, before the pains take over again.

TNS-Therapy: Transcutaneous nerve stimulation instrument - this has not helped my T-bone pains at all, despite I bought it myself and have had a lot of expenses

Training in a HOT water pool: I try as much as I can to go to the local swim hall, where they have a HOT BATH pool (36 C), where the handicapped people can train their muscles. It helps me a lot to get the sore muscles heating up and used . . . things I cannot do on the ground. I cannot use the whirlpool . . . .its too painful for me :0(

Heat pad: Helps my sore muscles a bit . . . ..but not the T-bones pain.

Daily walks: If my health is reasonable, I try to get a walk every day. It helps for the legs and the blood circulation, and the mental health too.

Psychologist treatment: Because of all my pains and losses in my life (loss of job, friends, some of the family) and because of how the authorities/insurance companies etc. handled my new life and situation , after some years I got a real bad depression, and could not cope with my life at all. I searched at the internet, for different mental treatments, because I had already tried the usual talks with psychiatrists. I found that there is a mental treatment called: Cognitive Behavioural Therapy. I found a psychologist who works with this kind of treatment, where the patient has to be ACTIVE from the beginning of the talks. (Make daily schedules what we do that day, if we have fear attacks (which I had) . . . put it in a form too with a scale from 1-10, homework for every time to meet the therapist, listening to books in tape with POSITIVE stories etc. etc.). This kind of mental treatment I can very much recommend to all, who has a depression too. I have been in therapy now for about 3 1/2 years now . . . . . . ..and it's my last chats with her . . . .the last 6 has been together with my husband, as marital problems often follows for people who live with daily pains.

Music: Helps a lot to lie down and relax to beautiful music - alternative or classical, or just some music I like.

This is my story . . . . . . I do not hope it was too long, but I still think we can all help each other with our experiences in all ways.

I have some questions for you out there in cyber space and T-bone group:

  1. Is there anyone who has had the same surgery as me . . . . . . .where only a part of the tailbone is operated out, and what is your experience about this ??
  2. Is there any suggestions about cushions I can use . . . .and maybe buy it in another country ??
  3. In what country(ies) do they X-ray the T-bone in BOTH standing and sitting positions ??? (We don't in Denmark -) . . . .and what it the experience about this ??
  4. Is there any medicine I haven't tried . . . .or other ways to kill my pains ?? I have suffered for 10 years now.

If there are any, who wants to ask ME questions . . . ..please feel free to write me.

Lots of love, Annette from Denmark




Pain came back after 35 years - Cranio-sacral therapy?

Anonymous

I am a 64 year old female with coccydynia and would not wish it on an enemy. My first injury occurred in a school gym class. I reinjured myself while doing situps on a tile floor when I was 28. From July 1964 to June l965, I experienced this horrible pain and found only relief while sitting between 2 books. Finally, my orthopedic surgeon agreed to do the coccygectomy. I found it to be the absolutely most painful surgical experience I'd ever endured. However, it only took about 2-3 months and I had no pain from then on.

Now, over 35 years later, the pain has returned. So far the doctor has had many tests done, an x-ray, and a bone scan. The bone scan indicated osteoporosis so I am now on Fosamax and am tolerating that pretty well. However, it doesn't do anything for the pain. I am now scheduled for an MRI. Recently, having been so frustrated by the situation, I have also been taking chiropractic treatments. While she has been able to correct certain misalignments, the pain remains.

Posted 2000-11-18

Update:

Since I first contacted you I have tried chiropractic, acupuncture, hypnotherapy, Sacro-Wedgy, physical therapy, cortisone injections - all after ruling out other possibilities via MRI, bone scan, xray, etc. Now I have heard about cranio-sacral therapy. Has anyone had any experience with this form of treatment??? Also, I found out in the bone scan that the tailbone operation resulted in a PARTIAL resection, not the entire coccyx. But I did have 35 years of relief.

Updated 2002-01-06




Hypericum for pain

Anonymous

I want everyone to know that Hypericum 30c (a natural herb which can be found at health food stores) is really, really helping me alleviate my coccyx pain due to a fall I sustained.

This has been the most helpful, but I have been alternating with heat and cold packs which seems to help a lot as well.

Good luck to everyone!

Note from Jon Miles:

Hypericum 30C is a homeopathic medicine. The '30C' means that it has been diluted by a factor of 100, thirty times in succession, so that the original Hypericum has been diluted by a factor of 1,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000 and there is none of the Hypericum left in the medicine given. See Homeopathy for more information.

Updated 2002-04-14




Sitting comfortably

Anonymous

I am a 28 years old female person living in France, and I have had coccygodynia since September 1995. I have had this severe lower back pain uninterrupted for seven years now. I have seen more than 50 doctors in France, the US and Germany, and I have undertaken many forms of treatment including :

Basically the pain did not recede (except for the injections for a short - but blessed - period of time, and for morphine which was fantastic but I could not stay on it). I have had very strong phases of inflammation, at some point in 1997 I had to stay constantly in bed for about six months as I could not move - not even walk - the inflammation was too bad. Other health issues have started to emerge du to this problem (heart rhythm disorder, global back pain due to muscular tension, severe depression), which was not helping - but you know all this. Reading back what I just wrote, I realize this is a whole lot of pain : I have never written this before, and I still have a very hard time talking about it. For some reason I guess I feel ashamed (for not being "normal" I guess, for making what appears to be a "fuss", for not being able to have a normal life as a whole, not to mention the specific professional and social aspects that you know so well).

The reason why I am writing to you today is first, to share it with you (can't believe I am doing it though ! what a bold move !) ; and second to tell you about two remedies that have made a serious difference in my life. Not that I have a miraculous solution : unfortunately I don't. But all these years trying to cope with this poisonous problem have made me improve my sitting-challenged survival skills ! I have tried all the solutions that you mention : cushions, barstools, donut, kneeling chairs, etc. But either they would not be "sustainable" (I could not stay on them for a long period of time, for example on barstools or kneeling) or they would pressure my butt-muscles (that's typical of the donut I found) so that they would not really work for me on a long run. Since I have just finished my PhD and do research currently, I am most often in a sitting position, so I had to find something that worked better for me. And I did : that's the good news for people looking for alternative ways.

Here's two great ways to sit (I am sitting right now writing this to you, which would be impossible for me without these solutions ) :

1. For sitting in public areas (work, social events,...) and as well as for transportation in cars, planes, trains I got one of those U-shaped neck cushions designed for airplane-travellers. They are much better than donuts as they are open in the back so they don't press on you muscles, and you can bend them and position them as you like. I have tried four types of U-shaped cushions :

Actually when I have to travel on very soft chairs (planes, trains,..) that have an uncomfortable inclination, or to sit on some of those awfully soft restaurant chairs, I use two of these buckwheat cushions : piled up, they are high enough for my bone not to touch the cushion. That really helps a lot. When travelling in planes, since I can't afford first class tickets, I also put a normal, square or rectangular cushion in my back behind my waist so that my position is both comfortable and healthy (the combination prevents from crouching).

2. For my home and office, I use another life-saving device : a tripod-stool designed for artists. I use a portable one made in leather designed for outdoor-drawing or painting. It allows my coccyx to not touch anything while sitting. It is of great help. Although I have to stand up and walk every half or one hour, I can work for quite a long time on it. And this is really much better than kneeling or lying down or standing : I have done all of this for five years, it was not nearly as comfortable as those solutions.

Updated 2002-04-07




I did it on my HealthRider!

Anonymous

I actually injured this area using a HealthRider. I was enjoying it so much that I was using it almost an hour a day. No pain at all. Then one day, I realized that the seam on my jeans felt funny in that area. I did associate it with the movement of the HealthRider, so I stopped immediately.

That was about 5 1/2 years ago. Cortisone helped for 10 months, then never helped again. The religious use of a donut helped and I was relatively pain free for a few years, but it has come back with a vengeance and is now worse than before.

Updated 2002-06-09




Slipped getting onto a stationary bike

Anonymous

My foot slipped while I was getting onto a stationary bike, and I landed on the seat on my tailbone. I was in terrible pain for 4 months. I am an Administration Assistant and had to keep standing up at my desk. The pain nearly consumed my life. Riding in a car was horrible. Sitting on anything was painful, soft or hard.

I took Ibuprofen daily and very gradually the pain let up. It has been over a year and it still hurts at times.

Doctors don't seem to be able to do anything about this except prescribe pain medication.

Updated  2002-07-07




Coccyx pain caused by stress

Anonymous

I am a 30 year old male from Australia. A few months ago I suffered a terrible experience with coccyx pain. I had never before suffered any coccyx pain, and had not had any injuries in that area. My father had an experience of months of coccyx pain during a stressful period of his career many years ago.

In March this year, I gradually noticed a pain developing in my coccyx. Over a period of 5 days it got to the point where I could not make any movement without excruciating pain. Walking was almost impossible, the process of standing up or sitting down were unbelievably painful, although sitting in certain positions gave me some respite. Probing of the muscle/tissues connected to the bone showed they were very sore. In all, it was absolute agony at its worst.

About a month prior to the attack I booked in for my first tennis tournament in about 10 years. I used to be a serious player, but had lost most of my game over the years. I prepared for the tournament seriously. I was consciously looking forward to testing myself in the tournament and had high expectations of performing to my ability. From time to time I did feel a little anxious about how I would go, but generally my feelings were positive.

The coccyx problem started 5 days before the tournament was to be played. Nevertheless, I assumed it was going to get better (therefore did not seek any treatment), and still expected to play the tournament, which was to be played at night. On the afternoon of the 5th day, the day of the tournament, the pain was so bad I realised that there was no way on Earth I could possibly play. I was going to have to withdraw. In my mind I resigned myself to the inevitability of it. Within 1 hour I noticed the coccyx pain was markedly improved, which represented the first improvement of any description since the pain had begun. By the time I reached the tennis court to tell them I couldn't play, I wasn't too far away from being able to play!! Within about 3 days, the pain was completely gone. I have had no recurrence.

There is no doubt in my mind that some underlying subconscious stress about the tournament was the sole cause of my coccyx pain, as amazing as it may seem. I have been faced with countless other stressful, and more stressful, situations in my life without coccyx problems, but I have no other explanation for my story.

Hope this story helps someone!

Updated  2002-07-14




Frustrating tailbone pain

Anonymous

Original posting, 2002-08-04:

Over the past 3 months, I have had tailbone pain when sitting for more than five minutes. I have little idea of what could have caused this. I was riding a horse without a saddle with friends and I had an acute pain in my intestinal area below my stomach (I have no idea what that means or if that could be a cause of my pain). It has become very frustrating and I fear that I will be stuck with this for the rest of my life.

I am currently seeing a chiropractor that thinks the pain may be caused by the muscles surrounding the tailbone or something (he has a medical term that I don't remember). He used a treatment the first day that I went to see him. He hooked up 4 massaging things, I don't have a word of what to call them, but they are similar, and stronger than the ones that appear on television for strengthening abs.

I am writing you the day after the first treatment. I am feeling less pain while sitting at my computer. I don't know if that is because it worked and have found the cause of my pain or if it is working as a sort of placebo. I will be going back for two more treatments within 2 weeks. I am praying that these will totally eliminate my pain, as I will be going back to school very soon, and sitting 8 hours a day can't be good for healing.

I am praying for everyone out there that has tailbone pain, most of which is more severe than mine.

Update, 2002-09-08:

I just thought that I would pass on something that seemed to help for me. I'm a student, sitting 8 hours a day in hard plastic chairs. I recently began taking a regimen of pills that really help me. In the mornings, I take one glucosamine/chondroiton pill (I've heard its good for bones), and one Aleve that will last all day. In the evenings, I take two Advil, another glucosamine/chondroiton pill, and a vitamin C tablet (heard that it is anti-inflammatory). My pain has reduced greatly, and I can actually bear to sit for 8 hours a day.




Ice hockey injury

Anonymous

I am 15 years old and a very serious ice hockey player. About 4 days ago I suffered an injury to what appears to be my tail bone at a hockey camp I am attending.

It happened when I was skating backwards and another player who was skating forwards ran into me. His head/helmet hit me in the tail bone. However, he did not hit me directly at the bottom of my tail bone it was just up the back a bit. Not much at all though.

The next morning I attempted to attend the next ice-time, but the pain was too much to handle so I had to get off the ice. For the next 2 days I did nothing but rest. It didn't feel much better but I tried to skate on it once more. At first the pain wasn't that bad, but after only about 2 minutes the pain came back and was unbearable. I thought that once my adrenaline got going that the pain would slip my mind. However, that wasn't the case and after half hour of skating through the pain I went off the ice. The next day the pain had seemed to get way worse. It has been 2 days since the last ice-time and it doesn't seem to be getting any better.

I have been taking some pain killers, such as advil. And also a medicine that I picked up at a health store that is meant to help treat bruises, aches, sprains, breaks, etc. I have not yet seen a doctor, but have an appointment in a few days. I am curious as to what I may have done to it. And also as to how long it should take to heal enough that I will be able to get back on the ice.

My season is starting up in about 2 weeks, and it is, by far, the most important season that I will play in.

Updated 2002-08-25




Sore tail bone started with a shoulder injury

Anonymous

In December of 2001, I woke up one morning with a restriction in my left shoulder. It wasn't frozen, but several normal motions, such as throwing or touching my left hand to my backbone, were impossible.

In the months that followed, I developed a variety of sore muscles, mostly on my left side. The most maddening has been a sore tailbone. I'm not in the kind of pain that so many visitors to this website speak of, but the sore coccyx seems to be getting worse. Ironically, the shoulder restriction has lessened considerably.

Four doctors were baffled. Totally wasted money. A bodywork massage therapist may be responsible for the gains made by my shoulder. He told me the sore tailbone was some kind of spinoff from the shoulder restriction. Somehow, the original injury is passing on pain, right to the end of the spinal pipeline.

Anybody out there know anything about pain that is passed on to other body parts? My intuition tells me something is out of alignment. Nowadays, I get muscle pains from simple lifting and pulling.

Last point: I'm thinking seriously of becoming a raw foods vegetarian in hopes that might help. If anything in this message resonates with you, I hope you'll post a reply.

I send all of you healing Love & Light from the edge of the Western Ocean.

Updated 2002-09-01




Tailbone injured in water - complete recovery

Anonymous

I injured my tailbone in a rather unusual way. While holidaying, I jumped into a rock-pool from a cliff several body lengths in height. I didn't hit rocks or any other objects, just flat calm water, and I didn't feel anything, so I'm afraid I made the jump twice.

It was not until several hours later, after walking and swimming some distance that I began to notice mild pain in the region of my coccyx when I sat on hard surfaces. This confused me for a while, as I had not fallen over, and it took me a while to realize I must have injured my tailbone from jumping into the water. I had never heard of this before. It didn't concern me too much though, and seemed to get better over the next few days.

However, some days after that the condition suddenly seemed to get worse. At work one day, I experienced the characteristic excruciating pain on standing up. I couldn't seem to make the link between SITTING making the problem worse, and for the first day of this pain, I continued to sit down. The pain on standing up was enough to make me wince and call out, prop myself up on my arms and to feel faint and dizzy.

I began to get concerned at this point, as I was 3 months pregnant, and worried about the effect of an injured coccyx during childbirth. I cursed my recklessness and regretting that jump, as you can imagine.

I found this site the following day. It did scare me to read about so many people's ongoing chronic pain. I couldn't believe I may have fractured or broken my tailbone from something this simple. And I worried I'd destroyed my chance for a natural birth and would have to get a caesarean. Fortunately your site did stress the importance of not aggravating the problem, and I was able to take immediate steps based on your tips on coping. My pregnancy did spur me into action a little quicker than normal, as I wanted to really "kick" the problem before it had a chance to get worse. So I took every step possible from as soon as I knew I could.

At the office, I simply lowered my chair and knelt on my heels. As there are only so many hours one can kneel on one's heels, I also constructed a makeshift "cushion" out of two pieces of Styrofoam (used to pack computers), which allowed me to sit in reasonable comfort. Elsewhere, I found that sitting on bench seats or stools where my backside could hang over the end, helped the problem. And at home, I knelt or lay down with no problems. I shopped around for a coccyx cushion, but found nothing suitable in chemists or medical supply stores. Finally, I went to a shop specializing in foam and rubber and bought an inexpensive wedge of foam that I cut the back out of, and covered with a pillowcase. I can now use this at work and in my car. I also found my wedge shaped cushion designed for meditation is very helpful. It is made of very high-density foam, and even without cutting it; it can support my weight so that just the edge of my backside overhangs the back quite comfortably. (High-density foam wedges like these can be found in meditation centers, ashrams and yoga supplies stores. You could cut them if you wanted to.)

Now, eight weeks since the initial accident, the pain has disappeared completely, and I am back to normal and able to sit with no pain whatsoever. My pregnancy is also progressing normally, and there is no reason why I cannot have a natural birth. The point I wanted to make, is first to inspire hope that not all tailbone problems have to be severe or long lasting, and that more importantly, careful early management of a coccyx problem can make recovery much faster, and I would urge readers to take whatever steps they can NOW, before it gets worse. A friend told me of a tailbone problem he had for a year, which he continued to sit on and make worse, and how after just a month of not sitting, the problem was cured.

So go ahead and buy or make that cushion right now. Even if you feel conspicuous, kneel on chairs, stand up on public transport and at social gatherings, and lie down at home. Do whatever you can to avoid sitting, and you may be pleasantly surprised at the speed of your recovery.

Updated 2002-09-22




Caudal epidural injection caused coccydynia

Anonymous

In February 2000 I received a caudal epidural injection. I have never had coccydynia until the very moment I received this injection. My doctors have all dismissed that the caudal injection has anything to do with the coccydynia. The day of the epidural, the doctor had difficulties doing it. I have been told by one doctor that he believes that it is possibly due to incorrect placement of needle causing bleeding under the surface of the bone.

I am wondering if this can develop into a cyst. I am so annoyed with the doctors involved who seem more interested in the big 'cover up' instead of actually trying to find out what has caused the coccydynia. All I want is to try and find an explanation so I can hopefully get some relief from this problem.

I wonder if you have any similar case histories?

See more about similar experiences here.

Updated 2002-11-17




Arthritis of the coccyx treated with steroid injections

Anonymous

I was diagnosed in December 1999 with arthritis of the coccyx, and like many other contributors to the site I bounced around to different doctors seeking help. I went to a pain management clinic in Florida where I received a series of three caudal steroid injections 2 weeks apart. I am now post 4 weeks since my last injection. I have noticed a marked improvement.

I hope and pray that this is a long term solution as I have suffered for 3 years. I actually retired early from my job in New York because the job required sitting most of the day. The pain was almost unbearable.

Good luck to all.

Al

Updated 2002-11-24




No relief in sight!

Barbara - bambif1@juno.com

I am a 50 year old legal secretary. I have been suffering with low back/tailbone pain now for 7 years. It began with a fall in 1995 when I fell and broke my tailbone. At first the pain was occasional and I had trouble laying at night to sleep. Over the years it has worsened to the point where I cannot lay at all anywhere for longer than 10 or 15 minutes, which makes getting a night's rest impossible. I cannot lay on either side and if I lay flat, I have to pull my legs way up and practically lay like a folded letter in bed. Thank goodness I have an adjustable bed for that purpose. I have had 3 sets of 3 epidurals, a direct nerve block and have had my SI joint injected. The first two sets of epidurals were helpful, but the last set didn't do anything and neither did the SI injection. I, like everyone else on this page, have been to every type of doctor imaginable, had every test known to mankind (MRI's, CT scan, bone scan, X-ray) and they all come back negative. I have been told I have soft tissue or nerve damage (meaning they have no idea what's causing it).

I have tried Vioxx, Celebrex, and many other anti-inflammatories that did nothing. I have done the amitryptyline, but couldn't stand the side effects. I have also done the neurontin thing, which helped short term, but it eventually became ineffective too. I now am taking 30 mg. of MS Contin (morphine) with 10 mg. of Percocet twice a day, but am still not pain free. Nights are still awful. Most nights I sit on the edge of the bed and cry.

I'm finally seeing a specialist in coccydynia on December 6 after finding this site and realizing what the problem may be. I'm hoping he can help me. I'm at my wits end and don't know how I can go on with this much pain.

Updated 2002-11-24




Coccyx pain slowly got better after treatment by a chiropractor

Anonymous

Last May, at the age of 55, a friend and myself went rollerblading. I fell very hard on my bottom. For the first week I was in some discomfort but nothing really bad. Then all of a sudden I was in extreme pain -- could not sit or sleep. I was a mess. I went to my MD who also is with a holistic group of doctors and he sent me to a chiropractor. He manually popped my coccyx back into place. For several days I felt some relief and then suddenly the pain was back again. I went back to the chiropractor and he manually set the coccyx back again. You could hear it pop.

I was still in quite a bit of pain for two months but it slowly got better. I used ice a lot - 20 minutes at a time. Don't use it constantly as it will stop the flow of blood to the area. Take it off for a while and put it back on. I had 5-6 ice packs in the freezer.

I bought one of those pillows but felt it was a waste of money as it just didn't fit my bottom right and was more of a nuisance then anything.

I also was on pain killers when needed. I would also recommend that a person be willing to take them for a while, while your body is healing as they do make a big difference. It takes a while to heal when the coccyx is damaged because of the huge amount of swelling that often takes place in that area after an accident.

I also went to the chiropractor for full body adjustments as my fall also caused a lot of other things to be misaligned. I would heartily recommend a good chiropractor as I probably would still be in pain without it.

Updated 2002-12-15




Finally some relief!

Anonymous

My husband fell down our stairs at home a year ago and broke his tailbone off. He has been disabled ever since. He was unable to sit, walk or stand for any length of time and was in constant severe pain 24/7. He has tried everything the doctors have recommended and nothing has helped until a few weeks ago.

His doctor recommended a procedure that was experimental for his condition and it worked!!!!!!!!!

It's called pulsed radiofrequency neurotomy. If you want to research this on the internet we found most of our information under "radiofrequency denervation" there are a few variations to this procedure.

My husband has been so frustrated and tired of the doctors telling him he shouldn't be disabled by this condition and wondering if it was all just in his head. We were at the point of considering removing the tailbone but that really didn't seem like the answer and the results didn't sound very promising. After reading several of the stories of people with the same situation we were afraid this was never going to heal and he would be in this severe pain forever. But we are here to tell you that this procedure works. We felt obligated to share with others who are suffering. So please check into it!!

Note from Jon Miles:

See also the section on nerve blocks.

Updated 2002-12-08




Pain and bump in coccyx area

Anonymous

About four months ago, I started having coccyx pain and noticed a small bump around the area. It lasted about three weeks and then one day I noticed some pus and by the morning the bump and the pain was gone.

For about four months, nothing happened, but today I noticed a bump again. The pain is bearable but I really don't know what it is and I'm not exactly comfortable seeing a doctor about it.

Note from Jon Miles:

This sounds very much like a pilonidal cyst.

Updated 2002-12-15




Coccyx pain and pregnancy

Ayishah Williams -  ayishahf@yahoo.com

I'm 24 weeks (6 months) pregnant, and I've been having coccyx pain since the beginning of my pregnancy. Initially, the pain was at its worse only after I had been sitting upright for awhile. Now, sitting for more than a few minutes is extremely painful, and I have a very sharp pain in the area when I go from prolonged sitting to standing. I was in such severe pain 2 months ago that I finally had to go to the ER where the pain was finally diagnosed as coccydynia. I was prescribed a donut pillow and some Vicodin, which I have refused to take, though the ER doctor assured me that it's safe when taken only for severe pain. (Is there even such a thing as a safe narcotic?) The pain has definitely worsened considerably as my pregnancy has progressed. So much so, that even laying on my stomach (I'm still rather small for 6 months) or side no longer offers any relief.

My OB/GYN recommended that I stay at home the remainder of my pregnancy, so I've been on medical leave from my job for the last 6 weeks. She also told me in no uncertain terms that the condition will definitely worsen with delivery. I'm her first patient she's know to have coccydynia while pregnant, so she referred me to the orthopaedics at the infamous Kerlan-Jobe for a better diagnosis. While I was making my first appointment, I had to explain to two different people my situation. There are only two doctors in their offices who have any expertise in this area. And I was told that while they could schedule me to see one of the doctors, there really wasn't much they could offer me treatment-wise because of the pregnancy. I decided to forego the visit altogether. I'm sure they will be of much better use to me after I deliver.

Updated  2002-07-21




Low back pain

Barbara - BWJ5@AOL.COM

I've been reading info on your website over the past year concerning coccyx pain. I was told a year ago that I had broken my coccyx. I finally went to an orthopaedic surgeon today who said it was dislocated but that shouldn't cause low back pain. It should only hurt in the tailbone area. Not only does the tailbone still hurt, I have pain across my lower back that feels like it's very tight and after sitting a while, will feel stiff and ache. Has anyone else had problems with lower back pain along with the tailbone pain? He has recommended an injection to see if that will help. I'm also curious about experiences with this. Does it hurt? I would appreciate any suggestions, info, etc.

Thanks,

Barbara

Updated 2002-04-07




Finding a surgeon who has a clue!

Barbara - Bwj5@aol.com

I have been reading info on your website for about a year. I found out in June of 2001 that my coccyx was broken. I don't even know how it happened but I suspect it was on a jet ski. I just started having lots of pain in the coccyx area and lower back. Had an x-ray that showed it was broken.

Finally, a year later, I made an appointment with an orthopaedic surgeon who said it was dislocated. I had a steroid injection which helped the pain a good bit but I'm still uncomfortable driving. I had my follow up with him today and he uses the words dislocated and broken simultaneously. I don't know if there's a difference.

On April 8 I had the steroid injection. I was pretty sore from the injection for 2 days but over the course of 2 weeks my tailbone pain minimized. It has been a month since the injection and I'm doing better but I still have an awful time when driving or sitting although it doesn't hurt as much when I stand from a sitting position now. Obviously, we don't know how long the injection will help but I can get 3 to 4 a year according to the orthopaedic surgeon. Of course I would like to have no pain but I guess I will wait to see how long this injection will last.

I was pretty sore for about 2 days but after about 2 weeks I was much better. Now I don't think about being careful when I sit down. I plop down and don't give it a second thought. Driving is still rough though. I'm using a buckwheat neck pillow that I read about on this website that someone else recommended and it's helping a lot.

Anyway, we will try the injections but he doesn't want to do more than 3 to 4 a year. My lower back feels achy and the muscles in my buttocks feel tense and sometimes I have cramps. Maybe from tension due to how I sit to avoid causing more pain.

I may want to consider surgery at some point but I'd like to know if anyone knows any surgeons in the Charleston, South Carolina area. This seems to be a very strange condition to most doctors I have talked with. They tell me you can't do anything about a broken coccyx. I find this hard to believe.

Anyway, any info anyone has to share would be appreciated.

Thanks, Barbara

Updated 2002-05-12




Magic sneeze

Elizabeth "Betsy" S. - E_Sconyers@msn.com

As a child, I broke my tail bone jumping rope. For years, I suffered with the physical pain as well as the emotional pain from my doctor telling me it was no big deal.

Then the craziest thing happened. I was in a tanning bed and I had an incredible urge to sneeze. Not wanting to hit my head on the bed, I held back my sneeze as much as possible but the force seemed to shoot down my spine and my tail bone 'popped' - then I got a fantastic cool rush feeling down my legs. It was AWESOME!!

I lived pain free for 15 years. Unfortunately, 3 days ago the pain came back-just out of the blue. Looks like its time to start working on that tan again!!!

Good luck to us all! This pain is no fun....

Elizabeth "Betsy" S.

Updated 2002-10-06




Childbirth after coccygectomy

Bettina - robmar@saltspring.com

Almost three years ago I broke my tailbone delivering my son. I had a coccygectomy in May 2000 which has slowly brought me some relief although I still have some pain.

I am now seven months pregnant and am terrified to give birth again. I have not found anyone who has had a coccygectomy and then given birth vaginally. I am more interested in a ceserean section but have been told that my situation does not warrant it although the care givers that are telling me this have never delivered a baby to a woman without a coccyx nor do they know of anyone that has. I cannot bear the thought of going through the pain I had after my son was born again and I'm also worried about nerve damage.

I would love to hear from other women who have either successfully given birth vaginally post coccygectomy or have had a ceserean and if they had a ceserean what were their doctors reasons for suggesting it. I'm quickly running out of time and can't seem to get answers from any doctors in my area. HELP!!

Bettina

Updated 2002-04-07




Tailbone pain from Tarlov cysts

Bev - ArtyMc@aol.com

Can't believe ALL the doctors I went to for the past five years or more didn't know anything at all about this. (Tarlov cysts). Most of the doctors I went to just kind of looked at me like, well, you're old, you're overweight, that's all that's wrong with you.

But I can't sit for very long at all any more and finally FINALLY a doctor ran an MRI and found I have inoperable tarlov cysts. So my next trip is to the pain clinic for injections. Anyone know any surgery that works?

Bev

Updated 2002-04-07




Acupuncture helped eventually

brstotts@aol.com

I have suffered with severe pain for about 8 years. I have gone the whole 9 yards with medical doctors, such as x-rays, cat scan bone scan, and cortisone shots with absolutely no help.

So out of desperation I have been trying acupuncture. I have had 7 treatments and I am here to tell you that the pain is all but gone. I don't know how or why but if it works I don't real care. I have just a little soreness if I lean back in an uncomfortable chair.

Updated 2002-04-21




We all heard my tailbone crack during childbirth

Anonymous, Australia

Original posting, 2002-08-25:

On 2nd August 2001 I gave birth to my first child. His delivery was considered 'normal', but at one stage we all heard a 'crack' (my poor tailbone!). As soon as I went to sit afterwards, I had excruciating pain in the tailbone region. Being a first time mother, and not really knowing how 'sore' one should feel after childbirth, I just put up with it best I could. Days passed and the pain was just as bad, so I mentioned it to my midwife and she said I cracked or dislocated my tailbone during the delivery and it may take a few weeks to come right.

It is now a year later and although the pain is now not as intense as at first, it is still a constant pain. During the past year I have had physiotherapy, ultrasound and acupuncture treatment, none of which has made much difference. Anti-inflammatory medication helps. To make things a bit more challenging, I had my appendix out in January and after that surgery had to lie on my back for a few weeks, making the tailbone pain worse. I find the pain worsens when sitting, leaning back while sitting, lying on my back and after exercise (or housework!).

I have seen an orthopaedic surgeon and he recommends cortisone injections (x-ray looked normal). This apparently cannot be done while breastfeeding so I am waiting until my son is weaned (we are nearly there!). If that doesn't work, I'm not sure what I will do - removal sounds drastic to me. I have spoken to someone who said having another baby put their pain to rest. This is in our plans, however it is the thought of the pain becoming worse again or the tailbone breaking again during delivery which is currently putting me off having another child. Many have said I should opt for caesarean next time.

Update, 2003-08-03:

Am still experiencing pain from my tailbone, particularly when sitting or after sitting for long periods of time. Since my first posting I have also received treatment from a Bowen Therapist and a chiropractor. The first made no real difference, the latter made it worse. I am finding that the only thing helping is time, and being careful with what I do and how I sit. I am now pregnant with my second child. I am very apprehensive about giving birth again. I would love to hear from anyone who has any advice, if they have had a similar experience, or have had a child following a tailbone injury.

Update, 2004-01-25:

GOOD NEWS!!! I had my baby on January 11th. We had a little girl and she weighed 7 lb 10 oz. AND I am pleased to report that I had another natural birth and this time did no damage to my tailbone at all!!!! I am so relieved as you can imagine. The pregnancy caused me a lot of lower back pain and at times made my tailbone very sore, however in the last 6 weeks or so the pain eased as I think the baby turned to a better position. I was very nervous through the labour, but am now very glad that I didn't have a c-section as a lot of people had suggested this was the way to go. The labour was longer (11 hours as opposed to 9) than my first and I am sure the contractions were more painful and intense (unless my memory is playing games!), but it turned out she was more difficult to deliver as she was born with waters unbroken and her hand/arm up on her head, resulting in a more difficult journey through the birth canal and a few stitches for me (ouch!). I wondered at the time how on earth such a birth could not have done some damage, or at least aggravated the tailbone, but in fact I can honestly say that since the delivery my tailbone has been feeling fine.

I am enjoying life so much more than I did after my son's birth and I can't believe the difference being able to sit makes!

I know that if my tailbone had been damaged again I would be quite depressed right now, so am grateful that everything turned out well for me after 2 years of pain following the birth of my first child. The only thing I can advise that I did differently was make sure that I remained upright through the entire labour and delivered in a kneeling position - last time I was flat on my back for most of it which apparently is the worst way to be.




Going to have injection

Carole - caroleh@mail.aoc.state.ky.us

I broke my tailbone on February 20, 2002. According to my x-rays, it is at a 90 degree angle and will stay that way.

The everyday pain is wearing me out mentally and physically. Some days it is a dull pain, some days sharp, everyday there is pain. This injury has truly been life altering for me.

Mid-July, I finally went to a pain management doctor and he suggested an inter-ganglion injection (I believe that is the correct term). It basically means shooting a numbing agent into the fibers that my tailbone are hanging by. I'm not sure how long it will last but I'm at the point that even temporary relief of this pain will be worth it.

Updated 2002-08-04




Drugs and physical therapy don't help me, doctor advises against cortisone

Carole S - Cdbs1122@aol.com

Back in February 2002, I was cleaning 24 floor-to-ceiling windows of my home. This required me to continuously stand and stoop at each window. About half way through, my lower back and left hip were really starting to hurt, and I realized I was overdoing it, but I didn't stop like I should have. Our house was about to be put on the market, and I had to finish the job at hand.

Needless to say, I really did a number on my lower back and left hip. I was miserable and in a lot of pain from the muscle strain for several months. Raising my left leg to put socks on or pants was nearly impossible.

About two or so weeks afterwards, still in pain from cleaning the windows, my tailbone started bothering me. I first noticed the pain while going from a sitting to standing position. Then as the months progressed, I noticed that sitting back in a chair brought about a pressure feeling and pain, and the pain is quite bad when getting up and taking the pressure off the area. Now, the pain bothers me at night if I sleep on my back too long. When I get up in the morning, the moment I sit up on the edge of the bed, the pressure is back again. My tailbone does not bother me when I stand or sleep on either side. Sitting in every chair I have in my house bothers me. I have to constantly sit straight up and a bit forward, and that tires my back out. Most evenings I have to lie on my bed on one side with pillows under my side and my head in my hand to watch TV. Relaxing back in the recliner is impossible for me. My tailbone is extremely tender to the touch.

Nothing I take by mouth seems to do anything at all. If I take an Ultracet and two Naproxen sodium tablets together, that helps take some of the edge of the pain off for about five hours, so I can rest. There have been a couple of times that it didn't do anything. Ultracet alone does nothing. Naproxen sodium alone does nothing. Ibuprofen doesn't touch the pain, either.

I have seen an orthopedic surgeon who didn't help me at all. He took x-rays and said they looked fine. He ordered a bone scan . . . said it looked fine, too (he read the films himself). He gave me a sample of Bextra that did absolutely nothing. This ortho said he did NOT recommend cortisone injections at the tailbone site. He said it was from his experience using cortisone in the coccyx area, that, because cortisone tends to thin the skin out, if that happens in the coccyx area, I would be worse off than before the injection. So that will not be an option for me. I wonder, however, if a round of prednisone by mouth would help?

The ortho sent me to physical therapy, and that didn't work. The therapist really didn't seem like he knew what to do with me. I bought a TENS unit . . . hasn't helped yet. I went to a chiropractor for six sessions. He used deep heat ultrasound, and lots of manipulation. At my last visit, he said he wasn't sure if he was helping my tailbone or irritating it. Let me tell you . . . he was irritating it.

The donut pillow doesn't help. This is going on nine months now. My left hip is also still bothering me, especially when I lay on my left side. The ortho and the chiropractor both feel the tailbone pain and the hip pain are related, especially after the severe low back and left hip strain in Feb.

I have an appointment on December 9, 2002 with a rheumatologist. I hope she can help me. Getting a good night's rest seems so far away...

Carole S.

Note from Jon Miles:

I have never heard of a doctor who does not think it is wise to give any corticosteroid injections at all. Many doctors will not give more than 2 or 3, some will give 10 or more, spread over months or years. I heard from one woman who has had more than 50 such injections over 9 years, and is continuing to have them every 3 months as they work very well for her. Her anesthesiologist sees no problem with this so long as they are effective.

Updated 2002-12-01




Tailbone pain, doctors stumped

Cathy

Original posting 2002-03-31

I gave birth to twins, vaginally back in February of 99. They weighed 6.1 and 6.3 pounds. The doctors believe this is when I received my trauma to my tailbone. Anyway, I have had numerous tests, (MRI, bone scan, etc). they all come back normal. I have had the injections which worked for about 5 months, but recently the injections (two, two weeks apart), did not do anything.

I am in a lot of pain, especially when rising from a sitting position, it is almost breathtaking the pain. The doctors are stumped. They are now suggesting a spine specialist. I am at the end of my rope. Any help would be greatly appreciated.

Cathy in Pennsylvania.

Update posted 2002-07-28

I had the surgery to removed my tailbone on June 21 st. The surgery itself was not as bad as I ever thought it would be. I was very lucky to have a doctor who was experienced in coccyx removal (two a year). I still am experiencing pain, I'm hoping its still mostly from the surgery.

As far as the surgical experience, it was really not that bad. I keep praying that this pain is only temporary.

Thanks,

Cathy in Pennsylvania




Strange complications/infections since surgery

Cathy - CATHYSTIMS@aol.com

I have had a coccygeal cleft and prominent coccyx my entire life, I was born with it. Through the birth of three children and 38 years of life, I have never had a problem. Unfortunately, in December the skin surrounding the cleft began chronic infections. After much research and surgeon consultant it was decided to remove the cleft and reduce the coccyx prominence ("remove a knuckle").

No problem with surgery, healed well, stitches out one week later. 8 days after surgery I started with severe night sweats and low grade fever. After 6 weeks of this, hospitalization for diagnostic purposes, many, many tests for things not even related to the surgery (e.g. is this menopause?) an MRI showed infection around the coccyx.

Seven weeks after the first surgery, I had surgery again. It turns out that my body had a "foreign body reaction" to the absorbable (Vicryl) stitches. I had filled a fluid filled sac and the stitches were floating around in there. This was all removed and the wound was left open to heal. Cultures also confirmed a staph infection.

One week after that surgery, fever and night sweats returned. Now the diagnosis of osteomyelitis was confirmed. 10 days after the second surgery I had the lower three portions of my coccyx removed for osteomyelitis, I was also started on another antibiotic for an infection named pseudonomas.

Now 1 week later, fever and night sweats are back.

My doctors have been great and I don't have any question about their capabilities. I do however feel like I am living a nightmare!!!

My suspicion now is a "foreign body reaction" to the inert, permanent stitches that were used.

Has anyone heard of such a thing or had any type of post surgical infection????

Thanks,

Cathy

Updated 2002-06-02




Bike ride started the pain

Chandler - bulldawgbarks@bellsouth.net

It started around February of 2002 after a bike ride of some length. My tailbone was so sore, I had to walk my bike home. As a 50 year old athlete, I thought nothing of it and went to work. By April, I realized I was hurting and went to my urologist, I thought it was a nasty prostate infection. He put me on a strong antibiotic and 6 weeks later I still had trouble sitting (required for my CPA job). The urologist gave me an ultrasound and defined my problem as a prostate abscess in need of a "nothing" operation. Now I know there is no such thing, but I went through it with catheter and all the pain of it. One can imagine my dismay when after six weeks, I was supposed to be healed and the same pain in my perineal area remained. Oh, what now? The urologist sent me to a pain specialist who did an MRI to discover two herniated disks. Okay, now I probably have referral of nerve pain from T-12 and L-1. So he performed a new type of IDET procedure which I am now recovering from. But my tailbone and perineal area still hurt.

I then went to an orthopedic surgeon who told me I had coccydynia a "hard to get rid of injury". He suggested an epidural of steroids and I got that, which was better for a little while but nothing special.

So now I have my computer stand up station and try to never sit. I heat and ice my butt as often as I can and am really quite depressed. I can't even swim without pain from kicking, much less run or bike. I am against being drugged so try to use only aspirin and Advil.

It seems that the Almighty Medical Profession could figure out a little problem such as a pain in the ass, but I guess there is not much money in a cure.

Any suggestions?

Updated 2002-12-15

Bike ride started the pain

Chandler - bulldawgbarks@bellsouth.net

It started around February of 2002 after a bike ride of some length. My tailbone was so sore, I had to walk my bike home. As a 50 year old athlete, I thought nothing of it and went to work. By April, I realized I was hurting and went to my urologist, I thought it was a nasty prostate infection. He put me on a strong antibiotic and 6 weeks later I still had trouble sitting (required for my CPA job). The urologist gave me an ultrasound and defined my problem as a prostate abscess in need of a "nothing" operation. Now I know there is no such thing, but I went through it with catheter and all the pain of it. One can imagine my dismay when after six weeks, I was supposed to be healed and the same pain in my perineal area remained. Oh, what now? The urologist sent me to a pain specialist who did an MRI to discover two herniated disks. Okay, now I probably have referral of nerve pain from T-12 and L-1. So he performed a new type of IDET procedure which I am now recovering from. But my tailbone and perineal area still hurt.

I then went to an orthopedic surgeon who told me I had coccydynia a "hard to get rid of injury". He suggested an epidural of steroids and I got that, which was better for a little while but nothing special.

So now I have my computer stand up station and try to never sit. I heat and ice my butt as often as I can and am really quite depressed. I can't even swim without pain from kicking, much less run or bike. I am against being drugged so try to use only aspirin and Advil.

It seems that the Almighty Medical Profession could figure out a little problem such as a pain in the ass, but I guess there is not much money in a cure.

Any suggestions?

Updated 2002-12-15




Searching for a treatment

Charlotte A. Jagneaux - jagneaux45@yahoo.com

I just got back from the medical supply store where I purchased a round, heavy rubber ring that has to be blown up for me to sit on. It feels great, and I don't feel pain when I sit on it. WHAT A RELIEF!!! Now I can sit down and do my job (I'm a paralegal) without the incessant pain!!! The doctors all tell me that my tailbone will have to be removed, but I will keep searching for another treatment. As a personal injury paralegal, I have seen many people have back surgery with the expectation that the pain will disappear. The reality is, is that the pain can sometimes be reduced, but the surgery most often seems to aggravate, rather than help, your back problems.

I spoke to an old massage therapist yesterday who told me that when she has trouble with her tailbone she goes to a osteopath in Ponchatoula, Louisiana, but that's a 2 1/2 hour trip, and I don't think I can sit that long. She swears by this man. His name is Dr. Truluck, and she says he's 82 years old and weighs about 99 pounds, but has been a doctor for many many years, and can manipulate your tailbone so that it ceases to hurt and the inflammation can clear up. Maybe now with this new ring, eventually I can make the trip.

Thanks

Charlotte A. Jagneaux

Updated 2002-03-31




Started after miscarriage. Seen 18 doctors, finally had coccyx removed

Cynthia -  harn@sbcglobal.net

Original posting 1999-06-01

1997 & 1998 - During a pregnancy that miscarried, I began having lower back pains. I had a few minor slips in my life landing on my tush, but never a hard fall that I could attribute to the pain. After the miscarriage I started seeing NUMEROUS doctors. I was sent chasing around to 18 doctors by my worthless insurance company and the lousy doctors they referred me to. I am now almost 43 years old.

I am glad I had the surgery, but it still hurts. The Neurontin is a wonderful help, as is my tush cush. However, I am now pregnant and can't take the Neurontin. I'm also concerned about carrying the weight of a pregnancy on my lower back. It hurts, but it is better than it was last year at this time!

This is what has helped me:

I truly hope that we uncover some miracle soon for coccyx pain! Until then, I wish I could still take Neurontin during pregnancy. And I will continue hauling around my tush cush!

Update 2002-05-12

Cynthia produced twins, and was rather busy for a couple of years. This is her latest update:

I see the osteopath every two weeks and she crunches my sacrum back in place. Seems that all the exercises I do ... still do not strengthen the muscles and ligaments strong enough to hold the sacrum in place. Too many years of it being out of place has trained the muscles to snap back in the "let's lock up Cynthia's sacrum" position.

But I am definitely improving! I started out on 20 lbs on the Back Extension machine and I'm up to 95 lbs. The roman chair is also a good back and ab strengthening machine. Still taking Neurontin, Pamelor and Vioxx daily.

I'm very happy I had my coccyx removed in 1999!




Childbirth and broken tailbone

Christina - EmmetMadeira@aol.com

I am a 31 year old female and I broke my tail bone during the birth of my daughter 2 years ago. It was the most horrible recovery! My tailbone still hurts-especially when sitting.

My current dilemma is this: I am currently 7 1/2 months pregnant and am terrified of it breaking again. My obstetric/gynecologist doesn't feel as though a c-section is necessary. She kind of pooh-pooh's the whole thing and doesn't think it will happen again.

But what if it does? I went into a depression after my daughter was born for months and I believe it was due to the tail bone break. I'm running out of time and I'm really starting to panic. Any advice would be helpful.

Thanks,

Christina

Note from Jon Miles:

According to the doctors who specialise in coccyx pain, the coccyx doesn't actually get broken. It is naturally in two or three segments, linked by ligaments. An injury can weaken the connections between these segments, or between the coccyx and the sacrum. Then if you sit down, that forces the weak joint apart, causing pain.

Doctors who are not experienced in treating coccydynia think that the coccyx must be broken, because medical textbooks wrongly say that the coccyx is fused into a single bone. When the doctor sees separate pieces on the x-ray, he or she assumes there must be a fracture.

Updated 2002-04-14




Injections helped, but not enough, so now had surgery

Christy - davcristynanasiera@juno.com

Original posting, 2002-11-03:

I am 22 with 2 kids, and let me tell you if you are young, no doctor takes you seriously. They think "Heck, you're young you'll heal fast!!" Yeah, OK whatever.

My pain started the second or third month of pregnancy. I started developing a pain when I was sitting ,and especially when standing from the sitting position. I took my complaint to my doctor and we both came to the conclusion that it was just another one of those annoying pregnancy pains that would go away once the baby was born. I managed to deal with it for the next 7 months until my daughter was born. I'm sure you already guessed that the pain didn't go away! Of course not, it got worse. I couldn't sit, or if I was sitting I would get stuck in my chair.

I went on a search for a doctor to help me. I went to a lot of them, none of them could find an answer. All they could tell me was I had coccydynia and would just have to take pain medicines and deal with it. Well, I wasn't about to settle with that. I finally found a doctor close to me in Washington that sounded like he might know a little about this "rare tailbone pain". I went and saw him, and he actually had a lot of information for me and didn't just send me on my way like the others. We decided together to try the injections which helped, but not enough. We did this for about 4 months.

I went for my normal once a month check up last week, on October 25th. We decided to remove the coccyx. It was not getting better. I had the surgery a few days ago, on October 29th they removed the coccyx. It was a very fast surgery, it only took about 45 minutes. The recovery so far has not been too painful. I can't sit yet. I lay mostly on my side or stomach.

If anyone has had this surgery and can give me some tips on how to get through this or pointers on what to watch for after surgery feel free to email me please.

Good luck everyone!!

~Christy~




14 months post accident

Chuck - ChuckSigars@aol.com

I slipped and fell on some stairs in November 2000. I bounced on my backside several times and had immediate pain. I sought help that day from a physician, who prescribed pain medication and rest. Eventually I had x-rays (not dynamic) that demonstrated a fractured coccyx.

Over the next six months it got increasingly frustrating. I make my living sitting in front of a computer, and for various hardware reasons adjusting my work station to a standing position was not feasible. It got to the point that I could sit for 15 minutes, stand and stretch for 15 minutes, etc. An eight-hour work day got very long.

My family physician, a very sensitive and caring person, finally suggested Neurontin (gabapentin) along with adding the anti-inflammatory naproxen and changing pain medication from Tylenol with codeine to Vicodin (hydrocodone and acetaminophen; a small amount, as with the T #3). Upon reaching the prescribed dosage of 900 mg/day I almost immediately had near-complete relief. I was ecstatic; I could work at a normal level again (and a normal income). This lasted about three weeks, then the constant pain began to creep back in. We kept adjusting the Neurontin dose upward until I reached 2500 mg/day. I felt it helped, although I never got the complete relief again.

I had a steroid injection, which gave very transient relief (possibly two days; it was hard to tell, since the injection point itself caused discomfort) and saw a physiatrist, who found no evidence of a spinal problem (e.g., a disk problem), and advised that it would eventually heal but might take two or more years. He suggested stretching and walking more also. This was not a frustrating experience, by the way; he didn't try to minimize my problem, just stated his opinion and prognosis.

On straining my low back at about the one-year mark from my accident, I had a few physical therapy visits and the therapist noticed that my piriformis muscles (runs along your thigh, essentially) were very tight, either from a lot of sitting or possibly my body trying to adjust to pain. He gave me a list of stretching exercises and I felt some improvement from those.

I would say that my pain has improved monthly in the last six months, which I attribute to time and whatever "healing" process there can be in neuropathic pain, and the Neurontin. A side effect of the Neurontin, at least in my mind, is a slight elevation of my mood (I mean an antidepressant effect), which helps, of course.

Nothing works for everyone, of course, but from my perspective I can endorse Neurontin as giving some relief. I still take 1-2 Vicodin daily but even that probably could be reduced soon. Some caution and thinking ahead is always useful; any seat that forces the coccyx backward (theater seats and a lot of church pews, as it turns out) can be horrible. I also can't overstate the importance of avoiding depression, through whatever means.

Chuck

Updated 2002-01-13




Prolotherapy at NMS solutions

Anonymous

I kept thinking I would wait until I got my pain solved before I wrote - there are a lot of negative experiences already listed on your site. But, it is taking a long time and I really want anyone else who is considering NMS solutions in Southern California to benefit from my mistakes.

Chiropractic had gotten me to a point where I could sit up to 40 minutes in some chairs. I thought the tailbone adjustment would be the final thing to fix me, but I had not been able to locate someone who did tailbone adjustments. I read about Dr. Wooley's tailbone adjustments done under anesthesia on the NMS Solutions website. Dr. Wooley did two of these tailbone adjustments on me, then he convinced me to have Prolotherapy. I bought a book on the topic - thought I educated myself on this procedure, but I was too desperate to acknowledge to myself that nothing in this book talked about using Prolotherapy as a treatment for tailbone pain. Prolotherapy set me back more than a year in my progress. It has been over a year since I had this treatment. I have spent that last year trying to get back to where I was before I had it.

I should have realized NMS Solutions was not the appropriate place for me. Dr Wooley's research, on the NMS Solutions website, is on tailbone adjustments for low back pain, not tailbone pain. Everyone I have talked to since has said there is absolutely NO reason to get a tailbone adjustment under anesthesia. I agree. I have had an internal tailbone adjustment done by an osteopath here in Portland, Oregon where I live now. It worked with the body not against it - no pain- no need for anesthesia.

Updated 2002-09-15




Four-year-old with protruding tailbone

Colleen - nagy1234@hotmail.com

My four-year-old son has a protruding tailbone. It angles out instead of under his buttocks. It is sharp and pointed. My pediatrician doesa not pay much attentention to it and calls it coccygodynia. But from what I read coccygodenia is pain, not this malformation. He only has pain when he falls on it or slides around on a hard surface. Do you know where I can get some info. We live in Pennsylvania, USA.

Please help

Updated 2002-01-06




Riding a bike 6 months after surgery

Connie

After nearly 10 years of suffering and pain - and doctor referral after referral, not to mention the high medical bills, and quacks that thought I was the quack......always ready to give Another Pain medication to try, or comment it's all in the head, you have to learn to deal with it - it is part of growing old and etc. Like many others suffering, I did not want pain medication, I wanted my life back. I wanted to play ball - ride bikes - chase after my Grandchildren....

Being faced with a coccyx removal surgery (my coccyx was broken and very mobile) - I read your articles and hoped for half the relief you had gained..... I had my surgery on 12/18/01 - remained in the hospital for 2 days and then came home. I expected the worse possible pain.... To my surprise - the pain was less than I had experienced on a daily basis in my life everytime I stood up or sat down - and I found that I was actually able to sleep 6 - 10 straight hours without waking from the pain. On January 3rd I returned to work full time on mild pain medication (Ultram). I was on a full road to recovery until I developed an inter wound infection. On January 26th I went back to the hospital for a 2nd surgery to open and clean the wound. This time I spent three days in the hospital and 6 weeks on home PICC Line Antibiotics. My employer allowed me to work from my hospital bed and then from home --- so I never missed a days work. I also continued with my "Hospice Volunteer".

I am nearly 100% (95-99) I would say since my surgery. My surgeon removed the entire tail bone. My hope was to have a 50% pain relief. This past weekend I rode bikes nearly 8 miles with my Grandson and played softball toss in the park. We jog / fast walk daily. I think pushing myself forward aided in my quick, complete recovery. At the hospital my doctor and nurses kept saying slow down, you shouldn't be doing this, I can't believe you're walking, etc. I'm 50 years old ---- 10 years was wasted to back pain from a back injury --- the next 10 years are going to be productive and catch up!

Unlike most Medical Doctors - and surgeons out there - mine listened to me. I was not a number nor dollar sign to him - I was a human with a true life invading pain! I was his 4th tail bone removal, the 1st with 100% recovery!. (How often does a person actually break a tail bone?) My understanding and professional Surgeon was Norbert Roosen, MD, DR MED - Neurosurgery Associates of Oakwood - an Affiliation of Henry Ford Health System and Oakwood Healthcare, INC. 18181 Oakwood Boulevard Medical Office Building, Suite 402 - Dearborn, MIchigan 48124 (313) 436-2330 office (313) 436-2328 fax

PS: Last Evening -- I was climbing a tree with my grandson! This week end we are going fishing. Growing old should not be PAINFUL - growing old should leave behind memories of the great times we had with our children and now with theirs! I haven't taken pain medication in months.....I'm too busy catching up on LIFE!

Updated 2002-05-19




Manipulation by chiropractor stopped the pain

Craig Banks - csbanks@emirates.net.ae 

I developed uncomfortable tailbone pain over a period of a couple of months. I went to see the usual doctors with no solution.

In the end I went and saw a chiropractor who diagnosed the tailbone pain was referred pain from a disc or some such thing being out of alignment. I was about to head overseas and over a period of a week of manipulation he managed to remove all pain from the site.

It has now been 10 months since the problem occurred with no reoccurrence.

Updated 2002-08-04




Lump around the tailbone

Dan - bigbluefan07@gmail.com

I've been experiencing pain off and on around my tailbone for several months now. I think it all started around a year ago when I fell on my tailbone playing volleyball. I didn't think anything of it, as there wasn't much pain at the time.

However, as time went by, I noticed that there seemed to be a marble-like "growth" around my tailbone, and pressing on it caused pain. Not excruciating pain, but just uncomfortable. The pain seems to flare up every now and then arbitrarily.

Since it isn't a constant pain, I haven't seen a doctor yet. I've been hoping it will just go away. I'm having pain tonight, so I decided to search around on the web to see if anyone else was having similar experiences. I found your website, and I began reading some of your personal experiences. Now, I'm very much so worried.

I also have been experiencing a very faint numbness in my left toes for the past few months. Once again it's nothing major, so I haven't gone to a doctor for it. I never thought of the two being related, but now I wonder.

I just hope this thing isn't a tumor of some sort.

Can you or anyone else recommend a good doctor in the NYC area, preferably NYC or Bergen County, NJ?

Thanks very much for your informative site and any other information you can give me.

Regards,

Dan

Updated 2002-04-07




Still waiting for relief

Jennifer Kuykendall - danjen22@cox.net

Support Needed!

In March 2001 I started to ache whenever I sat . . . it became increasingly worse: after steroid injections, electronic stimulation therapy, MRIs, CAT scans, x-rays - bone scans. You name it, I've probably tried it.

I finally got to the point where I looked forward to surgery. My surgeon hadn't performed this kind of surgery in 3 years but I had run out of options. After removing as much bone as humanly possible I was hoping the worst was behind me ( no pun intended).

Two months later I was back in the hospital for another surgery to clean out infection. Drains were left in this time and I am really hoping my nightmare is almost over. The drains were taken out (OUCH), and it has been less than two weeks since my surgery.

I feel a small comfort knowing I am not alone.

Updated 2002-09-08




Rear-ending caused coccyx pain, had surgery

Dana -  LiLMissMP5@aol.com

I was rear-ended on the freeway February of 1999. After seeking treatment from 6 different (hard to find) doctors and not getting relief from cortisone, steroids, manipulation, medication, or massage...I finally found a doctor to perform a coccygectomy. He did it outpatient & I was doing well for the first 3 days. Until the anesthesia wore off. Then I got a little tender. But I am no worse off than before & am still healing. My doc is optimistic that I will have a 70-85% reduction in pain. I get my stitches out tomorrow!

Currently I am in litigation with the person who hit me. The defense doesn't believe that this occurred as a result of the fender bender since most coccyx fx's are attributed to fall injuries or birth. I'm not sue happy, but I do need to be compensated for the time I've taken off from this surgery.

Anybody else out there that was not symptomatic in any way prior to a car accident?

Updated 2002-04-07




Pain came on after back strain

David - defcondave@yahoo.com

For 26 years I lived in a world without pain. That all changed in June of 2001 when I tried to catch a computer than was falling off a workbench. This foolish maneuver ended up tearing a muscle in my upper back (thoracic), and doing some unknown damage to my lower back. For a year I suffered through occasional aches and minor pain, all the while seeing several doctors and chiropractors that would always encourage me to simply continue with my physical therapy. Then, after a year it was apparent the pain was not abating, so I went to see an orthopedic surgeon who got me an MRI and into a more intensive physical therapy program. The MRI revealed absolutely nothing of interest, and after taking three months off work and more physical therapy, my back was about 95% back to normal. I continued to go about my life and work.

Following are all the relevant events that may have helped produce my new tailbone pain:

In August 2002, I stopped seeing my regular doctor, and regrettably, slacked off on my physical therapy exercises. I had no major problems for a couple of months. On November 1st, 2002 I returned from a trip to PA where I had been doing more heavy lifting than I was accustomed to, but nothing I felt was overly strenuous. On the 4-hour flight back I noticed my bottom, near the tailbone region, became achier than usual, and continued to ache until I stretched or stood up. At baggage check I noticed a sharp pain in my tailbone area when I carried my 40-pound bag back to the car. Then pain became worse if I leaned to either side, so I tried to stand as straight as possible as I walked.

Six days went by, and possibly due to the fact that I was doing no heavy lifting, I had no pain. On November 7th, I was hurrying home for something important and sprinted about 1/4 mile of the way. I had not sprinted since about 1 year prior. The next day I noticed a dull pain in my tailbone when I sat down. Over the next few days of normal activity, I noticed the pain became worse upon sitting, notably after standing for a long period. The pain was on one occasion excruciating upon sitting after I had been doing some lifting, standing, and bending while working. The pain was multiplied if I sit down a hard surface. The pain dissipated after one or two seconds into a general soreness in my buttocks. Sitting on a hard surface increased the soreness.

On November 13th I went to see a local chiropractor that very thoroughly examined all my muscles and bones in the area. She found that something was misaligned in the area and tried to adjust it with some very hard finger pressing. What she did felt pretty painful, but afterward I was left with only some muscle soreness where she poked me. The original pain was no better or worse. She told me to come back in a few days if the pain didn't subside, and she would perform a procedure that required her to enter my rectum with her finger and perform some other adjustment. She said that that adjustment would likely fix my problem, though the procedure would be quite painful. It's now the 16th. The pain has not subsided, in fact, I think it's getting worse. I'm feeling more pain when I stand up from a sitting position.

I'm going to seek a second opinion soon.

Updated 2002-11-17




Pain with no injury

Dawn

I began having pain in the coccyx area in December 2001 when rising after sitting on a firm seat eg. dining chair, office chair. It felt just as if someone had kicked me hard. By January the pain was also occurring when I sat on a firm chair, walked any distance or stood for any length of time. I am a primary school teacher and spend a lot of time sitting on small seats at low tables or walking round the room stopping to stoop to talk to children, I simply couldn't cope and had to be sent home.

The doctor gave me various anti-inflammatories but these upset my stomach as I also suffer from an irritable bowel. He then tried to send me for an X-ray but this was refused by my local hospital as the consultant radiologist felt it would not be very informative. My GP then sent me for an MRI this showed some ' wear and tear to the coccyx'. I was referred to an orthopaedic surgeon who tried injecting the area with a steroid on two occasions but this was not really successful. He now has decided that I should be injected and have the coccyx manipulated under general anaesthetic and I am awaiting my day patient admission to have this done. In the mean time I am still off work and going crazy pottering around my home.

I was amazed when I found your website as I really did feel that I was more or less the only person with this problem and that everybody else must think I am swinging the lead or some kind of wimp for not just getting on and managing a ' bit of backache'.

Thanks for letting me get it off my chest.

Updated 2002-06-16




Can't sit

Debbie - mom2kev2@yahoo.com

I am experiencing pain in my lower back and also the tailbone area. The tailbone has been hurting for over a year now, and just recently it has gotten worse. I started a new job 3 months ago, lifting boxes that are close to 50 lbs. I am 5'1 and 125 lbs. I have one child that is 13 months old, I have been seeing a chiropractor for a bit now and stated that I have sciatica and back problems. I have complained a number of times about the pain when I sit. Should I ask him to have another x-ray done? He was given x-rays that are over a year old.

I am at my wits end, and now I let my job know that my back really hurts now do to the lifting of boxes and they sent me to a emergency medical to be checked and the medical center gave me Celebrex to take. I am fearful of taking this due to the side effects. I am in pain and I am only 29 years old and shouldn't have all these problems already. If I sit for a long period of time it feels like a knife right into my tailbone area, and if I do sit for a period of time the next day it is very painful. Help!! Do you know of any doctors in the NJ area?

Updated 2002-05-19




Tired of suffering from tailbone pain

Debbie - pdekkliment@elkvalley.net

About a year ago I started having tailbone pain out of the blue. I had suffered no trauma to the area. It progressively got worse and after five months and bottles of Advil, I went to my doctor. He did x-rays and found nothing. I went back a couple of months later and was given a cortisone shot in the tailbone. It did absolutely nothing.

After another couple of months passed my doctor sent me for a bone scan which also turned up nothing, so he sent me to see an orthopedic surgeon. The surgeon was at a loss as to why I would be having the pain and scheduled me for a Cat Scan which I'll have in a couple of weeks. In the meantime he prescribed anti inflammatory cream and I was to have massage therapy to the area. Both have done nothing.

I am finding in the past month now that after I have been sitting and I get up, the pain is horrible! I also described a pain in my L5 region which has point tenderness. I find on days when my tailbone is giving me more trouble than usual, that spot hurts also. If I am on my feet too long, I can't bend over without hanging on to something. It is very, very sore to bend over. I have been sitting on a donut for months now but gave it up a couple of weeks ago because my back couldn't handle it anymore.

I am a secretary and spend 8 hours a day, 5 days a week sitting. I am getting so frustrated not only with the constant pain (which only goes away when I'm laying on my side), but it is affecting my way of life. I didn't ski last winter for fear of falling on my behind, and unless I can get this resolved I won't be hitting the slopes this winter either. I love to fish, but after going out in the boat last summer once with my donut and extra foam, I couldn't move for three days. I'd love some suggestions for other angles to look at and how to cope with the constant pain.

Thanks.

Debbie

Updated 2002-11-10




Use of Neurontin for tailbone pain

Debra L Mahood

I have had tailbone pain for approximately 1 year. Recently I was sent to a pain specialist to search for a possible relief to this pain. I had no trauma to this area. The conclusion was the pain was from a pinched nerve when I was carrying my second child, during the last two months of my pregnancy.

The doctor prescribed neurontin to prepare me for my first shot in the nerve. The dosage was 1 a day at bedtime for 3 days, 2 times a day for 3 days, 3 times a day for 3 days. He left the regimen up to me as to how it effected my daily functions. A couple of days of drowsiness at each start of the upped dosage and a small bout of dizziness and all seems to be going well. The pain seems much less and I can have a full nights sleep and work in some comfort. All in all it has been good and I have only been taking the medication for 9 days.

Debra L. Mahood

Updated 2002-02-17




It didn't hurt till about 8 years after the injury

Denise Rendon - krazy6d@hotmail.com

When I was a little girl, say about 5 years old, I was at my neighbor's house and we were playing on the swings when I fell and hurt my tail bone.

It didn't hurt till about 8 years later. It started hurting when I was in 7th grade and I was about 12 years old. The pain was terrifying. It was hard for me to walk. The hardest part was sitting down. I had to sit down at an angle to try not to feel the pain. I was at a wedding once and I love to dance but this day I couldn't even dance. I would cry so much because the pain wouldn't go away. Oh I hated it. I thought I was going to have surgery but then I went to the doctor and I was feeling better. Ever since then I have felt the pain like 3 times.

I am 15 years old as a sophomore in high school and glad it went away. I am not in pain now but every once in a while I get a sharp pain from sitting down a lot. When I went to the doctors the nurse told me that I should buy a "doughnut pillow" to sit in and it won't be as painful.

Updated 2002-01-27




They told me this was all in my head

Diane Kramer - Dianeastro@aol.com - phone/fax 561-626-8275

Original posting, 2002-11-24:

This is just to say that I am finally going to go for a "referral" to an orthopedic surgeon this afternoon. We have HMO's over here and everything has to go by the insurance company first. Forget the fact that I am in such intense pain with my coccyx I can barely sit for more than a minute.

Jon, I won't go into any indepth long boring story but I have suffered with coccydynia for almost 20 years and no one will listen to me.....including my 1990 visit to our esteemed Mayo Clinic in Rochester, MN. who told me this was all in my head.

I broke my tailbone in 1988 and also have Fibromyalgia Syndrome........ but I do thank you for your help in all of this painful misery.

Update, 2003-05-04:

Dear Jon and all other pain sufferers,

Hoped to have immediate relief from injection but find I am still in pain. Have to write this standing up. Thankfully because of your site, I found a good pain specialist in Miami, two hours from our home near Palm Beach.

Perhaps relief will come in a day or two.......do you believe this can happen? I am scheduled for physical therapy in a few days so will see how this will work out. We have to drive back down to Miami to see the physical therapist......the drive causes me to have to lie down in the back seat all the way with pillows under my body.

This whole thing has made me so depressed........I do have medication and we shall see how the whole thing pans out.

Does anyone else feel the need to vent like I do?

Thanks for your site once again.

Diane Kramer

Update, 2003-08-03:

I've written before and want to bring my coccydynia story up to date. I went to the hospital for a week and thought I was well but coccydynia has appeared again. Forget the shrink for me, he was 45 minutes late for our appointment and I was hurting very badly by then.......my "nerves" were shot, so to speak, and my husband and the doctor exchanged some harsh words and the psychologist told us the meeting was "over"; we left at that point. Leo (my husband) and I decided to go to our family doctor and he gave me some different medications but I am still not well today.

My stepson and his wife, Audrey, are going to be here later today. Unfortunately, Audrey's step-sister killed herself with a shot to the head. As you may imagine, this has been upsetting. I didn't know her step-sister but have to pull myself together for Audrey. I also feel my husband's son will have to be strong for Audrey, too. This is such a mess for me right now with my butt problem, it is tough trying to sit down.

My sense of humor is keeping me afloat, so to speak.

Love to all of you,

Diane Kramer




Coccyx removed in Paris

Dominique Bazin - dobazin@wanadoo.fr

For 4 years I have had a pain in my bottom, and the doctors didn't find the reason until I discovered your site on the Internet. It describes exactly what I have!

I printed out the pages and gave them to the doctors. They didn't like being taught by a patient but, after taking dynamic (sit/stand) x-rays, they agreed, and sent me to Doctor Maigne in Paris. (One doctor told me: 'It is a good reason for me to learn how to use Internet').

For one year, Doctor Maigne tried anti-inflammatory injections but they failed.

Tomorrow, I will take a plane to Paris and on Thursday Doctor Doursounian will remove my coccyx. I hope that it will give me a new life (after few months).

I have just one problem: I live in the Pyrenees mountains and I have to explain to my insurers that only Doctors Maigne and Doursounian, in Paris, can do this surgery and that my insurance has to pay the travel. Not easy. I will give you news when I am back in front of my computer.

10 days later:

I am back from Paris, and my two last vertebrae have been removed. They were hypermobile and they were free of the coccyx. They could move freely, and locked when I sat down.

36 hours after the operation, I was walking in the corridors of the hospital and 10 days later I am back at home. During the 10 days in the hospital I have never had any pain. It is as if it had been removed by a magic wand! I have to wait 2 weeks before I sit down, but I feel very good.

I will be glad to answer questions. I recommend Doctors Maigne and Doursounian! Once again I would like to thank you for your website. My only regret is that I was obliged to wait 3 years with the pain before discovering your website.

Best regards Dominique

Updated 2002-05-26




Coccyx bent forward at a 90 degree angle

From Donna  - Mark.Melsness@EC.GC.CA

Posted 1999-11-25

I had a baby 15 months ago, and was fine before that. I am still unable to sit comfortably. Six months after I had the baby x-rays were taken. I found out my coccyx was at a 90 degree angle bent forward (in). According to some doctors I've seen, I may have been born this way. My labour was very long and I had a difficult delivery. I also have had a lot of pain in my back, which developed five months after giving birth.

Six months of physiotherapy helped this a bit, but was not practical to continue. I was to a chiropractor who said my muscles "were a mess," but there was nothing he could do. I have also seen an orthopedic surgeon, several general practitioners, gynecologist, acupuncturist, a few massage therapists, and a physiatrist (muscle & sports medicine specialist). The physiatrist gave me a cortisone shot which didn't work for me. He told me there is nothing else he can do for me. He suggested a name of a chiropractor that does manipulation on the tailbone. I will meet with him and a person who does Deep European Massage. I am also on the waiting list for the pain clinic here in Winnipeg which I've been told has a waiting list of 6 to 12 months. I am also considering alternative types of therapy (ie. magnets, herbal medicine, natural oils). At this point I don't see any harm as so far all of the doctors don't know what to do for me.

Update 2002-02-24:

Hi Donna,

I found this personal experience you have described in coccyx.org about having a 90 degree inward bent coccyx (tail) bone.

My x-rays show the very exact problem, but in my case the problem is because I fell backwards about 3 years back. So far I have also been looking for a solution to the problem (tried all of chiro, physio, message, orthopedic etc).

I was curious to know if you have found a treatment or solution that you would like share the information with me to help solve my back problem...

Thanks for your time...

Prashanth -  prashanthkn@yahoo.com




Dana, we're in the same boat!

Emily - PhilliesPhan12@aol.com

My name is Emily and I am now 20 years old. I, too, was in a car accident (like Dana) at the age of 14 that resulted in severe coccyx pain which was eventually diagnosed as coccydynia. This accident occurred in August of 1995, and just this Monday, May 20, 2002, I will finally be going to arbitration to try and receive some reimbursement for my pain and suffering and hours of lost schooling and wages. These arbitrators, also, do not believe that a car accident could have caused this to happen, as me and my family were broadsided on the driver's side and then smashed into the guard rail on the other. My lawyer is going to do his best to prove that it most definitely IS possible, especially since I have reports from an orthopaedic surgeon and chiropractor saying so.

Who knows if I will ever see a penny for all the pain, even though I know that no amount of money can make up for the years of suffering, not only with my coccyx, but also my neck and lower back. All I know is that I am now scheduled to have a coccygectomy on August 15, 2002, all because someone had to drink and then get behind the wheel of a car.

Dana, if you read this, please respond! You are not alone!

Updated 2002-05-19




I really don't know if this is the case with me or not, but...

Ericka Walker - EWalker@wilsononline.com

I've been reading up on some of the comments on the Web Site, and it surely sounds like my problem. I suffered with this pain when I was 13, and miraculously it went away. Now, I am 32 and it's back again. I haven't been to the doctors simply because I don't trust them.

How should I go about explaining my symptoms? The pain is very severe. I cannot stoop and I cannot bend my neck as if I were to look down at the ground.

I just don't know what my next step should be. Can anyone give me any advice?

Ericka Walker

Updated 2002-06-23




It's TENSION, Folks

Frederick Darrah - darrahfc@netscape.net

Original posting, 2002-02-10:

Like many that have posted here I too over the last four years have tried everything I could to relieve my lower back (specifically buttock) and shoulder pain. It was very painful for me to sit for any extended period of time. It felt like the pain was radiating from the tip of my tailbone. My rear burned, ached, and throbbed. x-rays and MRIs showed nothing wrong. Everything was "normal for my age".

I tried every type of physician to no avail. These no doubt will be familiar to you: (In chronological order): 1.) Physical Therapy; (2) Chiropractic; (3) Acupuncture, deep-tissue message; (4) Orthopedic M.D. (Diagnosis: Coccydynia); (5) Headache and Pain Center (Series of three caudal epidurals); and (6) Osteopath (D.O.). Also, here are the medications I've tried: Cyclobenzaprine, Gabatril, Neurontin, Ultram, Vioxx.

While some of the medications helped to relieve my pain, NOTHING WORKED. I was getting to the point where I was either going to live to deal with the pain the rest of my life or get my tailbone removed as some that posted here had done. I was very close to doing the latter.

It was at this time that I stumbled on this site while doing research related to this problem. I read with complete understanding and sympathy those who are suffering with similar pain. Then I read the message posted by Todd. I am now CONVINCED that this is the source of my pain, and in applying the suggestions given in the book for the last month I feel I am on the road to permanent recovery!!!

I HIGHLY suggest that anyone with an experience like mine buy Dr. Sarno's book and follow it religiously-don't doubt his reasoning. He has over 17 years of success to his credit. I bought his updated book entitled "Healing Back Pain", IBSN 0-446-39230-8.

IT'S TENSION FOLKS! Dr. Sarno calls it TMS-Tension Myositis Syndrome. Check yourself right now. Are your shoulders crunched up? Buttocks muscles tight? Forehead frowning? Do you feel uptight? Check your entire body from head to toes. I KNOW you are. Over time your muscles will begin to complain and it does so by causing us our pain. It is the realization, or knowledge, of this fact that is the biggest contributing factor to successfully conquering the pain. It is NOT a physical malady. We didn't "hurt" ourselves somehow some time ago. As his book relates over 60% of his patients state that their pain was not caused by an accident.

I echo what was so emphatically said by Todd: GET THIS BOOK! GET THIS BOOK! GET THIS BOOK! GET THIS BOOK! Thanks Todd!

Frederick Darrah

Reply by Anonymous, 2002-03-17:

It isn't always TENSION, folks

I'd just like to say that I find it annoying that some people would invalidate real life experiences simply for the sake of peddling a book. Reading the above posting is like going to the doctor and saying, "Doc, my back hurts because I can't sit straight because my tailbone hurts all the time." And the doctor says to you, "work on your posture and you'll feel a whole lot better." I know because this has happened to me more than once.

Let me tell you. I did injure my tailbone. Perhaps your treatment worked for you. Don't tell the rest of us that it's all just stress and tension. You don't even know what I've gone through. I'm happy that you found a solution for your troubles. Don't invalidate my experience though. Saying that it's all just tension and that we never injured ourselves just reinforces the ignorance pushed on most of us by the medical community.

I encourage people to take charge of their own health issues. Perhaps many of our problems could be made better by reducing tension and stress. Perhaps if we could restructure our lives to avoid whatever is making our pain worse we could avoid much of the worst we endure. But, let me tell you, I have spent 8 years coping on my own, outside of a medical establishment that would not listen.

I have found that my pain is greatly reduced if I listen to my body. If I avoid tasks that place pressure upon my tailbone, I feel better. But I can't always control the bowel movement that hits my sore spot and makes me crazy. Believe me, there is no one who has less stress than me. I take life on my own terms, come what may, because I know what I can and cannot do.

But it makes me angry to hear tripe like "we didn't 'hurt' ourselves" or "it's (just) tension". If you want to share what worked for you fine. Try doing it with respect. Has it occurred to you that the posture you described in your post can be CAUSED by pain as well?

Don't understand why I'm so upset??? Try dealing with a medical community for 8+ years that keeps telling you you're full of it when you know you aren't. It is ignorance that keeps people down. Please don't peddle ignorance here. We need solidarity and understanding if things are ever going to change. It is easy to say that there is no abnormality, that means that doctors don't have to search for answers that are hard to get. I know the difference between muscle ache and being sore "in my bones".

Update  From Frederick Darrah, 2002-04-14:

Reply to: It isn't always TENSION, folks

Unfortunately some misinterpreted my post regarding the role that tension and stress may play in the pain we all have in common. To infer that all pain is caused by tension would be ignorant, which I am not. I was writing to those who, like myself, are in a great deal of pain with no known reason. I did not fall and injure myself. To my knowledge I did not "hurt myself when I was younger". MRI scans and X-rays show "nothing wrong". What then is causing my pain? No one seems to know. Where does one go when the medical profession "does not listen" nor has answers? I found many here that relate to what I had written. To "peddle a book" on this subject would imply that I was profiting by it, I am not of course.

Jon's introduction on this site states: "Coccyx pain is often caused by falling backwards or by childbirth, though the cause of pain is unknown in about a third of cases." It was to this group that I was writing. I apologize profusely if I offended anyone by not stating more clearly to whom I was addressing. Thank you for writing, "Anonymous".




Coccyx removed 5 weeks ago

Gail Daoust - mark.daoust@sympatico.ca

Hi Jon,

I was injured 2 years ago by a colon rectal surgeon when he was performing a rectal exam with a ridged sigmoid scope (12 inches in length). He struck my tailbone during the procedure, and my life changed completely from that day. I have been unable to sit since that day. I used a coccyx cushion that I designed my self to use at work (office manager). I could sit on my cushion for up to 1/2 an hour then I needed to stand or lie on my side. To manage my pain I changed my position every 1/2 hour to control the pain. I was unable to walk for more than 30 minutes without increased pain in the tailbone region and hips.

I tried many treatments and nothing worked. After two years of no changes, I knew it was time for surgery. I had surgery July 25, 2002 and was released from the hospital on the second day. Home care (nursing) was set up, to clean my incision daily and change the dressings. This was set up to assist in decreasing my chances of infection. My ortho surgeon ( spinal surgeon) used a suture at each end of the 4 inch incision and 8 steri strips in between. By week three my incision was healed. Yeah...... My internal stitches continue to dissolve/heal. My doctor stated that my tailbone was very loose and this was causing my pain, and my prognosis is excellent..

I spend my days resting (laying on my side) and walking a bit around the house. I can now sit sideways on the couch. My hips get quite sore. I ingested Demerol my first three weeks. By the fourth week I decided to go off all medication, and see how I feel. The withdrawal from the Demerol lasted about one week, but now my head is clear and the pain is very manageable. I prefer to take no medication at this time. I use Extra Strength Tylenol if needed at bedtime. Overall I feel quite good. Pain minimal and mobility good.

I have not tried sitting yet. My doctor wanted me to wait until my six week follow-up, before trying to sit. I am hoping to start working out of my home part-time at week 7. I will discuss with my doctor.

I have a few questions and hope that you can give me some advice in regards to them. The reason that I would like to have some information regarding these questions is that I don't want to rush the recovery process.

  1. When do people typically start attempting to sit down after surgery?
  2. When you start sitting should it be on a coccyx cushion and then start weaning to just sitting on a chair?
  3. When do people with office type jobs generally go back to work?

Please feel free to post this on your website with my name included. I will keep you updated on my recovery.

Staying optimistic,

Gail Daoust

Reply from Jon Miles:

  1. It varies a lot when people feel ready to sit again. I tried a couple of weeks after surgery, for a minute or two, but go with whatever feels comfortable.
  2. Experiment to find what feels comfortable for you to sit on. I found the coccyx cushion to be the best at first, then after a while just a plain 5 cm (two inch) thick foam cushion, placed on any seat I sat on (I still use it, though I don't always need it).
  3. Some manage a return  to work after 3 or 4 weeks, but 6 to 8 weeks is more typical. But don't expect to be able to sit all day. I mixed sitting, standing and kneeling to stay comfortable. It is best if you can arrange a sit/stand desk.

You're right not to rush the recovery in my opinion. What you need most is patience, as it does take time before you're ready to put your whole weight on a new operation scar for hours on end. Gentle exercise, like walking and swimming, can help keep you fit.

Updated 2002-09-01




Spinal cord stimulator implant

Gary

Original posting, 2002-09-08:

I have suffered from coccyx pain for 7 years now. I have no idea why it began. Can only speculate that during tenure in military that perhaps riding stationary bike each day maybe, kinda, sorta began this problem.

At any rate, I have had multiple nerve block injections. Ganglion Impar, with short term results. My pain physician has discussed Spinal Cord Stimulator implant. I indeed had the trial implant and got what I describe as excellent results. As you may be able to guess, It does not eliminate the pain, it simply does not register with our brain that we are experiencing the pain. I plan to proceed with permanent implantation of this device to aid me in better quality of life, because without it my quality of life is zip.

I know exactly what each and every person on this site are going through. The mere thought of the pain is horrific. It scares me to death to think about enduring it forever. I have got to take charge of this thing and move forward with a treatment that will enable me to 'GET MY LIFE BACK".

Anyone wishing details are welcome to email me.

Update, 2004-11-28:

The trial went well, but I never imagined that it would help as much as it has. As you know the stimulation simply blocks the pain signals from reaching the brain. I am still to this day (2 years later) amazed at the results.

I have a Medtronic device with 2 leads, 1 on each side of the tailbone. I can adjust the intensity at the flick of a button. I think my pain doctor was more excited than me about results. But that would be impossible, because I am again doing what I want, when I want.

Recuperation time was about 5 days. Actually I was back at the office in 4 days. I'm told that battery life is somewhat dependent upon how much you use the stimulator. Literature describes 7 - 8 years. I will have my battery replaced when the time comes to deal with that.

I always keep a soft spot in my heart for sufferers like myself and yourself with tailbone pain. It seems to dominate your every thought. I am truly glad my pain doctor introduced me to this thing. He is one of the finest people I've ever met and he took a genuine interest in helping me with the tailbone thing.

See also: Spinal cord stimulators and spinal pumps




Specialists in Seattle?

Gayathri  gayapra@yahoo.com

I'm 25 year old suffering with terrible pain in my tail bone area since two months. It all started with no reason. I have a 1 1/2 year old son whose life is getting affected because of my pain. I'm not able to lift him, play with him, or pay attention to him.

I visited a physician, surgeon and orthopedic but no use. They have taken x-rays and MRI but say we could not diagnose your problem. Also one of the doctors said ... This type of pain comes once in a while and will be there for few months and go. I really could not do any thing. My life is disturbed like anything... I'm eagerly waiting for reply from someone. Successors with this pain please let me know the details of specialists in this area. I'm staying in Seattle.  

Thank you, bye Gayathri

Updated 2002-01-06




Anything I should do other than walking?

Geri - geri-pete@webtv.net

I am not as active as I use to be and I'm only 38 years old, but I really feel 83. My chiropractor told me walking is good and that I should see him every day. Between the bills and the visits it really makes me old.

Two years ago I fell on the carpeted stairs at home. The day after, I could hardly walk or sit. Right then I knew my life would be different. As time went by (6 weeks) I thought this pain would be gone for good. I had to learn that soft foods would be better for me as pressing really hurts. Walking seemed to help, I guess, but I really did miss jogging.

I am Alaska native very fit for my age, I am a mother of three, 12,14 and 19. All normal births. I am 5 foot 1 inch, 130 pounds, normally 120 pounds. I'm very healthy aside from chronic ear problems.

I spent 72 hours on the greyhound bus (family emergency) last week after which the pain has increased, so now I am writing this laying on my stomach on a bean bag .

Is there anything that I should do other than walking? Are there any exercises I can do that might strengthen or align my coccyx or relieve my pain?

Sincerely Geri

Updated 2002-03-17




Coccyx broken twice

Gina - j_jina@bellsouth.net

My name is Gina and I have broken my coccyx twice in my lifetime.

I am now 32. I first broke my coccyx when I was 10 years old. My cousin and I were riding a sleigh in the snow and I was on back, we went over a stump and I fell off the back and landing directly on the stump at pretty high speed and hard impact on my tailbone. The doctor diagnosed it as a broken tailbone.

Then later I broke my coccyx while jumping in the back seat of my SUV and landing right on the seat belt inserter. The doctor said I broke my coccyx again; he saw my last fracture and told me I would eventually have arthritis in my lower back and especially my coccyx area.

Needless to say I have been through some incredible pain lately after carrying my 9 pound. baby boy and working full time up to term.

I currently have arthritis in my lower spine, a few bulging disc, spurs and degeneration in my spine. Many doctors and chiropractors say they would hate to see me in 10 years or so, due to the fact they think I already have a back of a 80 year old woman. I have been through the steroid injections and other medications for back pain. I have difficulty sitting for long periods of time and going on long trips. When I sit on the toilet my left leg goes numb, then starts to tingle again and finally comes back to life.

I don't know what anyone can recommend to make all this better but if they do I would be very interested in hearing their comments. I currently work full time and standing all day is part of my job. I have the opportunity to sit if I would like, so I rotate often when one position starts hurting.

I would like to hear from anyone who would have any advice.

Updated 2002-08-25




A continuous battle

Gina Parnell - Billsmoviestar@aol.com

Original posting, 2002-11-03:

I am a 43 year old woman who has been off work for nearly 5 months (I'm a legal secretary) and I STILL have not been diagnosed with anything! (although I think my current neurologist is getting on the right track with a possible diagnosis of coccydynia.) Here's my story...

When I was 10 years old, I slipped on the ice and fractured my tailbone. At that time, (and still to this day), there was nothing to do about it but to let it heal on its own. It did and I went on to live an active life which including dancing lessons, bike riding, playing like a normal kid, cheerleading.

When I was 27, I delivered my child naturally with MUCH back labor and pain. At 30, I had a total hysterectomy as a result of many severe problems, at which time my doctor related he really had to do quite a bit of work to tack up my bladder and bowels.

At age 37, I experienced my first herniated disc at L5-S1. I initially treated with a chiropractor (because I was walking around for a few weeks like Quasimodo) which provided much relief. At least I didn't feel like my whole spine was being compressed down. I then followed up with a neurologist who recommended physical therapy, which only aggravated my condition. After declining additional PT and not returning to the neuro-surgeon for further consideration of a microdiskectomy, I "learned to live with it."

A year later, I experienced another herniated disc at L4-L5 and at that time, my chiropractor indicated I had a very unstable sacrum. The PT he recommended only aggravated my condition so I again "learned to live with it." This chiropractor indicated that my best possible solution would be when my sacrum would fuse naturally over the course of time. (Sorry, but I didn't feel like the 20-30 year span in which this natural occurrence would happen was anytime too soon to help) At this time, I was started to experience increased stiffness upon standing after sitting for any length of time. Over the next several years, I treated chiropractically and as time passed, my sacrum and coccyx remained "unstable." My chiropractor did the best he could, being he was not a "medical" doctor, but still the pain was increasing in my lower back. My legs were dragging more, pain was increasing throughout my low back and hips, as well as piriformis and sciatic pain, with numbness and tingling in my legs and feet.

This past June, I had a bout of incontinence and my chiropractor referred me to my family doctor to rule out bladder problems. This was negative and the x-rays they did only showed my old coccyx fracture and minimal decrease in disc space at L5-S1. She gave me a shot that day of Depo Medval for pain and prescribed Zanaflex, a muscle relaxer. I requested my chiropractor refer me for an MRI which indicated the L5-S1, L4-L5 bulge and a NEW bulge at T12-L1. Because of my incontinence, my chiropractor was smart enough to know that this was out of his realm and said I needed to follow up with either a neuro or ortho and to possibly rule out a condition for which I can't remember the name of right now, but it involved pinching off of the nerve bundle at the bottom of my spine. The ortho I saw indicated that NONE of my symptoms were spinal related and referred me to a Urologist who indicated that my bladder condition was SECONDARY to my back problems. Over the course of a few weeks, maybe a month or so, I experienced problems urinating and was catheterized over a short period of time. I was also seen by a Neuro who prescribed Ultracet and sent me for PT, which only aggravated my condition, leaving me in such pain they had to wheel me out of the facility. Even the pool therapy which they said was a "softer" therapy left me incapacitated to where I was again wheeled out. They then had the know-how to stop my therapy and referred me back to my neurologist, who then told me to try just the neuromuscular massage. I found a very competent neuromassage therapist who gave me a wonderful massage but again I couldn't walk out of her facility without the accompaniment of two people because I couldn't walk without SEVERE pain in my hips, low back and had VERY LITTLE control of my legs. The medications only provide minimal relief and the only activity which really helps is sleeping in a prone position. Mind you, I have a family and during my waking moments have managed to do laundry and cook, sometimes feeling better but still experiencing excruciating low back pain radiating into my hips, leg pain, a feeling of swelling in my ankles, wrists and fingers, some ankle pain, a funny pain/weakness in the back of my thighs near my buttocks and when this occurs, I know it's time to lay down again. Three of my doctors have suggested Fibromyalgia, which runs in my family, but thankfully, my new neurologist is making headway and hopefully will diagnose me soon, and probably with coccydynia.

I have found a wonderful neuro psychiatrist who is working with me for pain management. She has prescribed Neurontin and I'm currently taking up to 5400 mg., Concerta which is a drug used to treat ADHD, Natural Testosterone which is supposed to help joint pain. I am also taking Effexor (an antidepressant), Bextra ( an anti-inflammatory) and Backsfa (another anti-inflammatory) as well as continuing with my Ultracet and Zanaflex. Taking all these alone is enough to drive anyone crazy (which is the way I feel at times).

I had a good stretch which lasted about 2-3 weeks wherein a couple of days within that time period I could move about really good. I could finally go shopping and accomplish more around the house. On the advice of my doctors, I was trying to increase my activity. But that only lasted a short time.

I am now back to 1/2 day of productiveness around the house or shopping, and then I'm down again for 2 or 3 days. EVERYTHING is a struggle and I get easily fatigued. I'm ALWAYS trying to pin my fatigue on either my meds, my activity or my body. Sometimes holding my coffee cup is too much for me.

I'm having an EMG performed 11/8 and follow-up with my neuro in December. He has indicated that I may need to have further testing done by means of checking my spinal fluids. I've had a bone scan (which revealed osteopernea? so I am taking a Calcium supplement daily), a CT scan of my sacrum and coccyx which was negative, hence the EMG.

Thanks to your site, I have learned about the Dynamic X-rays which I will ask my neuro about. I have also learned from your site about the surgery, but at this point, my husband says "no way", but I am keeping my mind and options open. I'm tired of not being pain-free or at the very least, able to function and get back to work. (This email has taken me 2 sittings to accomplish in a period of one week because I hurt so much after sitting at the computer).

I have also learned from reading other peoples' stories that sitting on a hard surface is better. That is the case with me, at times. Other times I need a soft chair and some times I can't even fathom sitting nor do I have the energy to think and physically type.

I have and still suffer tremors (but MS has been ruled out), memory loss, concentration loss, slurred speech, vision change and problems with blurring/double vision on top of all the physical pain/problems. Some of the problems, I believe, may come from the Neurontin, but it really keeps the pain at bay so I'm damned if I do, damned if I don't.

I'm applying for Social Security as I honestly believe I'll continue to be off work for at least the next 7 months.

I know the frustration that others I've read about are and had been experiencing and I'm hoping that my doctor will diagnose me soon and be open to the idea of the dynamic xrays and anything else that may be open to me. (He seems pretty open-minded). I need to get on with my life!

Update, 2002-11-17:

I had my EMG/NCV tests done. The only thing they showed was some nerve damage L5-S1 with radiculopathy, left leg. (Duh! I've known that for years!!) Since being introduced to this site, I've learned quite a bit and at my appointment I asked my neuro about Dynamic x-rays. He said he wasn't that familiar with them but that he was willing to check into it. Soooo, in my effort to "hurry" the learning process, I've printed out the info from this site to take to him at my next .appointment (December 16) Until that time, he just wants me to see how the Baclofen works.

I did have two good days this week, almost scary! but now I'm back down again. I started getting an irritable intestine (which I've had before from the Testosterone and the Neurontin) so I've decreased my Neurontin dosages. I'm allowed to take anywhere from 1800 mg. to 3400 mg. Yesterday I only took 1800 mg. but then I was up at 3:45 am in PAIN at which time I took 600 mg. Neurontin and two Tizanidine. Those kicked in only about 20 minutes. BUTT, my sleep was still interrupted. Butt, truth be told, I haven't had too bad a day - maybe a 6.

After going to my Neuro Psych doctor today, I'm going on a trial of Adderall 30 mg. a day in place of the Concerta, to see if it helps with my memory, concentration (from the Neurontin, I believe) and pain. I'll update to let you all know.

Gina




(No longer) waiting for approval from insurance agency

Glenda - glenda_moye2001@yahoo.com

Posted 2001-12-30:

Hello! I fell on July, 28 2001. It was in a public place and I was told that I can't go into details.

What I can say, is that I am upset that because I fell in a public place, the company's insurance agency has total say so on my medical care.

I am waiting to get approval for the agency to have surgery. My doctor discussed with me, the surgery and the cortisone injections. He explained the success rate for both and after some thought, I agreed with him about the surgery. The only thing now is to wait and suffer while the adjuster has the final say so as to whether I get the surgery or the injections.

Does anyone have any suggestions on how I should deal with this? Why do I have to rely on someone else for the medical decisions that concern my butt!!

Please email me and give me advice, words of encouragement, suggestions, anything that you think will help me through this.

Update 2002-02-24:

I am no longer waiting on the insurance company. On February 02 2002, I got the call. My surgery was not approved. I wasn't given a reason.

I cried the rest of that day and then some. I have been having to try to deal with this pain for quite some time now. I choose to do it medicine-free because I am a student and can not concentrate while on dorvacet.

On February 22, I asked my doctor to ask for something to help me cope. He said that I should try the injections. I figured that I now had no other choice. The injection burnt like all heck!!! The doctor said I would be pain-free for at least eight hours. Today is February 23, knock on wood. I have a serious "ache" going on back there but nothing compared to what I had before.

Will I have to take another injection to keep the pain at bay or am I now in the clear? Why was I so afraid of the injections in the first place? They weren't as bad as I was told they would be.

I hope that the pain stays gone!! I am ready to return to the world of work.




Should I try manipulation or go ahead with surgery?

Glynda Wells - glynda@hgchristie.com

In February of this year I had my dog outside on leash (she is about 75 pounds). I wasn't holding her very tightly because no-one else was in the yard. A friend pulled up and was sitting in her car - I didn't expect her to get out as she is not familiar with the dog. She must have gotten out of the car when my back was facing her and unfortunately, my dog noticed that before me and when she pulled, I fell directly onto my tailbone. From that day on I have experienced pain in the tailbone area and have been sitting on a tush cush.

About 4 days after the fall, I went to the hospital and had an X-ray and MRI and was referred to a neurologist - don't ask why? I figured the hospital knew what they were talking about. Anyway, I visited the neurologist and was placed on Vioxx (to be taken in the mornings - that helped) and another type of medication for the night (can't remember the name). On the second night of taking the medication, I got up during the night and passed out in the bathroom, hitting my tailbone again on the tiled floor. I was rushed to the hospital - the medication was too strong.

In March, I was referred by my doctor to an orthopaedic doctor/surgeon who injected cortisone into the area. That helped until a month ago when the cortisone started to wear off I guess. Now I experience pain in the tailbone area when sitting for prolonged periods, laying flat on my back or after exercising. I took a look at the area and it seems sunk in, blue black at times and I can feel little "lumps" in the area. I went back to the orthopaedic last week and after examining it he suggested removal of the tip of the tailbone as it is pushed inwards - that's the pain I feel when sitting down. He also suggested a little plastic surgery to bring muscle tissue from the surrounding areas into that area to eliminate the pain I feel when laying down because of the little "lumps" that are forming.

I visited my personal doctor who also examined it and said that I probably would hear the same thing if I got another opinion. His surgical book showed that injuries usually heal within 6 weeks and if after a few months and if a patient is still experiencing pain after injections, sitting on cushions, etc. then removal should be considered.

I read about manipulation. I spoke with my chiropractor who is willing to do it but she says that it may not last. The orthopaedics nurse also said the same thing. Is manipulation something I should consider or should I go ahead and get the surgery done? I'm scheduled for surgery in a week and I'm trying to ensure that I am making the right decision.

Updated 2002-08-04




Need to find a professional

Gracie - gracie8@att.net

I've had pain in my coccyx since August of 2001. I've had an x-ray and MRI done, both showing nothing wrong in the bones. I've seen two chiropractors and an osteopath who numbed the area and did an internal rectal adjustment. No use. I don't know what to do next or what type of doctor to see. A surgeon doesn't make sense as this is not bone-related, evidently.

My strong suspicion about the cause of the pain is having sat in a hard (metal) computer chair for a couple of weeks, and reclining so that my weight was on the coccyx. I have no way of telling whether this is nerve-related or fascia or something else?

As you can see, I have little knowledge and need a professional, but not sure how to find one who can work with non-bone coccyx problems. I don't think chiropractors are the answer.

I'm in Austin, Texas but would call other states if need be to speak with an expert.

Please help.

Thanks, Gracie

Updated 2002-06-02




Lacrosse injury

Hantzel - CUZimaTHUG83@aol.com

I was playing lacrosse and during practice, I got hit hard and landed on my butt/ lower back. I then thought it might have been a bruise or something. I didn't experience pain until 4 days after the incident and now I am experiencing horrible pains in my lower back region. When I touch it, I feel a little bump, and it hurts when I push it. When I get up after sitting for a little white, I feel pain.

If you know about how long it will take to recover from this, please let me know the fastest time it will take to recover. I am only a 9th grader and I have a long way ahead of sports left in my life and I don't wanna throw away my only reason for staying in school.

Sooo please if you can help me, contact me at CUZimaTHUG83@aol.com

Updated 2002-04-21




Pain returned after training for duathlon - now had surgery

Heather - gigglyrn@hotmail.com

Original posting 2002-03-31:

I was interested and somewhat disheartened by the countless stories on your site. I am a 30 year old nurse who is extremely active. I road and mountain bike, run, lift weights, hike, etc. Last fall I had a nasty crash on my road bike that left me with a fractured tailbone. I was told that it would take 4-6 weeks to heal and then I would be able to resume my normal activities. It was difficult at first, but I did manage to get back on the bike after 6 weeks of rest. I worked up to long training rides- 3 hours at a time on the weekends. I had a harder time running. My back almost always hurt after a run, no matter how easy it was. Most of my pain after the accident was in my lower back.

I have continued to have some minor back pain since the accident, but managed to just wave it off as 'oh, I worked out too hard, or I had a really bad shift at work'. I recently began hard training for some duathlon races coming up. Three weeks ago my back started to hurt again, consistently. It didn't let up with rest. Driving in the car was brutal. This pain in my tailbone and lower back has been very persistent with no improvement in intensity from day to day. This is very different from the fracture. Every day after the fracture I improved.

I have since had repeat x-rays, several rectal exams, an MRI, and a number of different medications including steroids. Currently I am going through physical therapy consisting of exercises to stabilize the conjoining muscles of the coccyx, and ultrasound. My doctor is not overly optimistic that this will help, but feels that we have to try this before considering surgery. He has informed me that I have coccydynia and that surgery is no guarantee either. He has had a number of patients achieve success, but tells me there is no 100% guarantee.

It blows my mind to think that I could permanently be like this. It saddens me to read the stories of you and others who have suffered with this for years. I think the therapy and steroids are helping with the inflammation around the tailbone and in the low back, but the coccyx itself burns and the pain seems to have intensified. I am trying to be optimistic. Please send me your thoughts and suggestions.

Thanks very much! Heather

Update 2002-08-25:

It has been 5 weeks since I have had my tailbone surgically removed. My tailbone was bent in the middle and freely moving in two places. The x-rays and the MRI that I had did not show anything other than a healed fracture from my initial accident. I broke my tailbone last September in a bicycle accident. It took 6 weeks to heal and I went about my life as usual. Four months later the pain returned after hard training to prepare for some bike and running races. Nothing helped. I tried PT, exercise, no exercise, heat/ice, massage, acupuncture, etc. I was pretty nervous about having the surgery, but figured if I was going to be stuck with pain I might as well give surgery a shot. As it stood I was miserable and unable to do any of the things that I really enjoyed.

I am very glad I had the surgery. It was painful. It still hurts on a daily basis, but it's surgical pain at this point. And the pain is not worse than before. My doctor tells me I will have this pain for about 3 months. My back no longer gives out on me and some of the pain I had before is definitely gone. I can't tell yet if the nerve pain when sitting/fast walking is gone. I imagine that I won't know for awhile.

I would encourage anyone who decides to have this surgery to plan to be out of work for a month and to have someone that can help you for the first 2 weeks. It's tough. But it does get better. Just remember that surgery is an option that you have and it works for many people. And be patient- it's really hard, but things will get better.

Thanks very much for the website Jon.

Heather

Update 2002-09-29:

It is almost 3 months since I have had surgery and I am almost 100%. I am so excited that I had the surgery- it's great to have my body back. My doctor told me it would take about 3 months for the pain to disappear. He was and has been right all along.

Last weekend I was a staff member on a 3-day, 270 mile bike ride from Ground Zero to the Pentagon to honor those that lost their lives last September in the World Trade Center attack. I did not ride the entire distance because of work restraints, but did ride 100 miles over 2 days without any pain either day or subsequent days.

The only trouble I have is occasionally sitting perfectly straight for longer than a few hours. I have not felt this good in over a year. I would highly recommend to folks that are still suffering from pain to stretch, stretch, stretch. When my muscles- especially my hamstrings are loose, my back feels better. I recently read an article that while it used to be said that strong abdominals will protect your back- new findings suggest that tight hamstrings can pull on the pelvic floor and rotate things enough to cause severe, constant back pain. I have found that the more I stay limber the better I feel.

Good luck and thank you Jon for the website- it's extremely helpful and informative.

Sorry to see so many people out there suffering.

Take care- Heather Hanlon




Any after-effects besides pain after surgery?

Henrietta - HHerbalOne@aol.com

I am a homehealth nurse and I am curious about whether or not anyone experienced any changes in bowel/bladder function or had abdominal problems after surgery. I am trying to relate function of coccyx to other body functions.

Thanks,

Henrietta

Note from Jon Miles:

Elsewhere on this site, I summarised seven medical papers about coccygectomy covering 209 operations. None of the papers reported any change in bowel function following the surgery. One paper reported that four out of 60 patients had temporary urinary retention.

Updated 2002-11-17




My injections

Ian Hobson - ianhobsonuk@yahoo.com

Ian's blog

I'm male, 51, had coccyx pain for almost two years, no known cause (perhaps an old injury). I've had several types of steroid injection:

1. The 'Quickie in the office'

This was over very quickly and was no more painful than a tetanus injection. The doctor was reluctant to get too close to the tip of the coccyx, where the pain radiates from (in my case) as the tip of the coccyx is very close the 'waste disposal unit'. I was advised to wait an hour before driving home.

Result:  The pain seemed to increase over a number of days and then recede. Days 18 to 22 approx. the pain was significantly reduced. But then after that, the pain returned to pre-injection levels.

Conclusion: It didn't work.

.....................................................................

2. Caudal epidural injection of hydro-cortisone plus local anaesthetic

This required a hospital appointment, with instructions to have only a light breakfast. I arrived at 9.30 am and was taken to a bed and asked to sit and wait. After 1 hr I was offered coffee and told I could lie on the bed if that would be more comfortable. I was tagged and had my blood pressure taken. About 11 am I emptied my bladder (fortunately). At about 11.30 am I was asked to change into a theatre gown and some paper underpants (to stop the iodine staining mine, apparently). Shortly after, I climbed onto a trolley and was wheeled into what seemed to be an anti-room to an operating theatre.

I lay on my side and relaxed (the best thing to do when having an injection) and chatted with both the doctor and the nurse, whilst the doctor gave me an "instant suntan" with the iodine. I felt the needle going in but only just. Then it got quite painful, perhaps twice as bad as a dentists injection and taking twice as long, but it was soon over and I wouldn't worry about having another one. I was wheeled into another room, had my blood pressure taken again, then returned to my bed in the ward.

I rested, as best I could (hospital beds are rather hard), had another coffee and later a sandwich and a cup of tea. I had been warned earlier that my legs might feel numb and that I might have temporary incontinence. At about 2 pm I asked if I could get up and walk about. The nurse walked with me to the toilet. My legs seemed OK. In the toilet I got a shock. I hadn't been warned that other things would go numb, and my 'things' were as numb as numb could be, and totally useless. I wasn't incontinent, quite the reverse, my plumbing had shut down completely. I tried again later, still no luck, I was encouraged to drink more. Patients are not allowed to go home until they have passed water.

By 4 pm I was in a lot of pain (caused by a full bladder). It had started in the groin and was working it's way up into my stomach. I was told I may have to stay in overnight and was transferred to another ward, where I was told that if I didn't empty my bladder they would have to insert a tube. I hobbled painfully to the toilet and sat on my numb-bum and waited. After a few minutes I felt better but was unsure why, until I realised that I was leaking. Two hours later, after a meal and two more visits to the toilet for a 'leak', I was allowed home. The numbness took about 18 hours to completely wear off. The next day I stayed at home to rest, as instructed, and everything was as it was before the injection. The doctor had said "It can take up to 28 days for the injection to work".

Result: I waited patiently for 28 days. The injection certainly did not make things worse. I had a lot of good days, plus a few poor but not bad days (though I'd had several good days before the injection). Some days were so good I thought the injection might be working, but I never really tested myself by sitting for very long periods or sitting without the aid of my coccyx cushion. I had two poor days (days 23 & 24) and decided that the injection had not worked. Then I had about 6 good weeks before returning to 'normal'.

Conclusion: Maybe it helped a little - I'm not sure.

...................................................................

3. Another Caudal epidural injection of hydro-cortisone plus local anaesthetic

I had the first of what was planned to be three caudal injections (different doctor and different hospital to last time). She actually gave me three injections. The first one was the anaesthetic - to stop the others from hurting - it hurt (kind of defeats the object really). Butt it wasn't that bad, and my posterior soon went numb - not as numb as last time though - she'd suggested using less to avoid anymore 'plumbing' problems.

Because I'd just had an x-ray at another hospital that showed a probable arthritic joint half way down the coccyx, she decided to give me first the caudal, then another injection closer to the arthritic joint. She seemed to struggle as though the needle wouldn't go in where she expected it to, but I felt only a little pain. Also she suggested that the next injection be administered under fluoroscope, aiming for the arthritic joint. After half an hour I was sent home. No fuss. No blood pressure checks.

Result / Conclusion: That night I was quite sore and slept badly. For 2 weeks the pain was worse and longer lasting. Lying down as well as sitting brought it on. But then it gradually went back to 'normal', and at just short of three weeks I noticed a slight improvement. Just in time for my next injection.........

...................................................................

4. Injection(s) under fluoroscopy (live x-ray)

As promised, I had injections under fluoroscopy. This time I had my blood pressure checked before being walked down to the x-ray department. The doctor explained that she was abandoning caudal injections (in my case) in favour of coccygeal injections and that this and the next would be done under fluoroscopy.

I lay on my stomach and was x-rayed from above and from the side. They seemed to have problems getting a clear picture. The results were shown on two monitors that I couldn't see. I had the bum-numbing injection to start with. Then she inserted the needle and stood back whilst the radiographer x-rayed me again. Then she adjusted the needle and stood back for another x-ray, and when she was happy she injected the cortisone. To my surprise she injected several coccyx joints and also both sides of the coccyx. The first two hurt a bit, but after that there was no pain and I lost count of how many injections I had - at least five. When all was done I was shown the last two x-rays, still on the screen. I could clearly see the needle. It looked very long. I was wheeled back to the ward and sent home after about 3/4 hour.

Result: My bum stayed numb until long after I arrived home, but by bed-time I felt very sore indeed and didn't get to sleep until 6 am. The soreness was like having an open wound and together with increased coccyx pain it left me feeling very sorry for myself, mostly because I now had pain from lying down as well as sitting, and found it impossible to get comfortable. This lasted for over two weeks and during that time I decided NO MORE INJECTIONS! Butt then, on day 18 the injection began to work. I found I could drive without much pain, and no lingering pain afterwards. And at work I was able to sit at my computer for short periods. I hadn't done that for a while.

Butt, it only lasted for 2 or 3 weeks.

Conclusion: Injections done under fluoroscopy seem to work best. But they don't necessarily last that long.

Footnote: In the end I opted for surgery. (See 'My Surgery')

Updated 2002-09-29




My surgery

Ian, UK - ianhobsonuk@yahoo.com

Ian's blog

Posted 2002-09-29

I'm male, 51 years old. I live in the UK. My pain in the butt came 'out of the blue' (unless it was a 20 year old injury, come back to haunt me). That was in October 2000. We (me and several doctors) tried waiting a few weeks for the pain to go away. It didn't. We tried a variety of cortisone injections. One or two of them helped a bit; but nothing permanent. I tried osteopathy. It helped a little but not much. I'd learned to live my life standing up, as I only had pain from sitting, but wasn't too happy about that. I'd been referred to a surgeon at Bradford Royal Infirmary who had me x-rayed and told me that the third coccyx joint from the tip was arthritic. He offered me surgery (to remove the last three segments of my coccyx) saying that I had an 85% chance of being completely cured and a 15% chance of some improvement. I agreed to surgery knowing that there would be a waiting list and that I could change my mind later if I wanted to. I was frightened; for two reasons: I thought it would be very painful (I was wrong about that). I'd heard lots of 'surgery made me worse' stories. But on 19th February 2001 I showed up at the hospital.

Day 1

I asked the anaesthetist if I could have a caudal block (injection into the spine to numb the area) as well as the general anaesthetic. He agreed. I had the operation at about 5 pm. The general anaesthetic was brilliant: I closed my eyes for what seemed to be only a few seconds and the operation was done, and there were no ill effects. And thanks to the caudal block (administered whilst I was 'out') there was no pain for about 12 hours. I stayed in hospital overnight.

Day 2

Having slept very little in hospital, I was glad to get back home to my own bed. I was surprised that the pain was so easy to bare. I slept a lot, but suffered from pain in my hips and legs as I'm not accustomed to sleeping on my side.

Day 3

Dressing removed. Buttocks well bruised.

Day 4

First bowel movement. OK apart from having to sit: going from sitting to standing hurt. First shower (and blow dry).

Days 5 to 8

As the 7 stitches tightened, the pain got worse. Having them removed was very painful, but it didn't take long and I felt much better for it.

Day 9

The wound became more painful and by evening had turned quite red. We (my wife and I) suspected that I had an infection. I went to an emergency surgery and the doctor put me on antibiotics. They worked (or maybe the infection was imagined).

Days 10 to 22

Progress was slow but bit by bit I seemed to improve. Anti-inflammatory tablets helped. I started to go for short walks down the road and to do a few minor jobs around the house: anything that could be done standing up. The pain separated itself into two: a soreness at and around the top of the wound and pain at the new end of the coccyx. Both seemed to be improving, with occasionally no pain at all.

Day 23

Still a long way from pain free and still not ready to sit (or return to work). But this morning I put on my wellies and went for a walk over/through a nearby hilltop/farm, climbing two stiles on the way.

Day 28

I cant help wondering if surgery was a big mistake. Progress seems so slow that it's hard to be sure there is any. My wound still feels sore; right down in the butt crack. And I still have pain at the tip (new tip) of my coccyx; the sort of pain I would have had, pre-surgery, after a one hour drive, i.e. feels like I've been sitting on the end of a broom handle for an hour. It's not bad pain; but if I stand still for too long it gets worse; if I lie on my back it gets worse; if I lie on my side it gets worse after about an hour. It's best to lie on my belly but that's not very comfortable, so I just keep moving. I walked about 2 miles this morning. That reduced the pain slightly, but it increased when I got home. I still don't feel ready to sit yet.

Day 32

Yesterday and today I've had noticeably less pain, and this morning I walked 3 miles, though it took 1 1/2 hours instead of the usual 1 hour. This afternoon I saw the surgeon. He told me again that the 3 segments of coccyx that he removed were loose, and that he is confident that he has removed the cause of the problem, and that I should make a full recovery. He had no worries about me still experiencing pain at this stage, and said that recovery time varies. He said that it can take several months, or even up to 2 years, to be completely pain free. I asked about internal stitches: apparently there are/were 4, just under the skin. I think I might sit for a minute tomorrow!

Day 36

I walked about 4 or 5 miles today (and lay sunbathing in the heather on Ilkley Moor for an hour). A little pain but not much. But still not back to where I was before the op. I find I can sit on my coccyx cushion for 2 or 3 minutes before it starts to hurt. No sit-to-stand pain though! I hope to go back to work next week.

6 weeks post op

About 5 days ago I mowed the lawn. I shouldn't have done that. It seemed to set me back about a week. So I still have more pain than before the operation. But I'm able to lie on my back for longer now (before the op I slept on by back, and mostly woke pain-free). This morning I sat (on my coccyx cushion) for 4 minutes, and hurt for about an hour afterwards. This afternoon I saw my GP and we agreed that I should have at least another week off work - maybe two. Am I getting better? Yes, I think so. Butt progress is very slow and has its ups and downs.

7 weeks

Sitting is still a big problem, but otherwise I am almost back to where I was before the op. So, back to work tomorrow!

8 weeks

I'm very disappointed. 8 weeks, and I still have more pain than before the op, despite sitting a lot less. Work was hard on the feet after a 7 week 'holiday', but my feet are OK now. I find it best not to sit at all at work, or the pain kicks in and lasts all day. I sat for dinner this evening (5 minutes). First sit for 4 days. After a minute I began to feel the pain - like a slowly tightening rubber band attached to the end of what's left of my coccyx. Now (1/2 hr later) I have that familiar 'having sat on the end of a broom-handle pain'. Am I getting better? No comment.

10 weeks

Progress is very slow, but 2 weeks have made a difference. I'm still not back to where I was before the op, but I seem to be getting closer. I mostly sleep well and wake pain-free. At work I now sit for 2 or 3 minutes for my coffee-breaks, and I can sit for the evening meal (if I eat quickly). And, on Saturday I had my first drive in 10 weeks. I managed 15 minutes. I found the car seat (plus the coccyx cushion) to be very comfortable. Slow progress is better than no progress.

3 months

Just as before, I have good days and bad days. But I feel sure that whatever caused the pain before the operation is still in there and still causing the pain. I seem to have more pain from standing than before; so work is still a PITA (pain in the arse). When I expressed my concerns in a letter to the surgeon he replied, saying that 'recovery from this condition/operation can be very slow'. Funny how he never mentioned that before the operation. My GP has given me some stronger anti-inflam tablets, and has written to the surgeon suggesting that I have an earlier appointment (late June).

4 months

I'm still no better off for having this operation and if anything, worse than a month ago. I did have a couple of good weeks after starting to take stronger anti-inflammatory tablets, but this coincided with a 10 day holiday from work. Once back at work the pain returned. The last hour at work is always the worst. As before the operation, sitting is the main cause of pain, but I find if I stand for too long, that can be almost as bad as sitting. Thankfully, walking is mostly pain-free, and can often relieve the pain. On a working day the pain starts as a barely perceptible dull ache, like a pea sellotaped to the bottom of my spine, and slowly becomes a lump of lead, but the focal point still seems to be the new end of the coccyx. My appointment with the surgeon is in 2 days (brought forward by 1 month at my GP's request). So, am I on the road to recovery? If I am, I must be in a traffic jam.

5 months

Nothing new to report. I'm to have a scan but I don't have a date for it yet. My surgeon still says I may yet make a full recovery - it just takes time. I think not.

6 months

I seem to have improved over the last two or three weeks, and feel as though I am at last back to where I was before I had the operation, i.e. mostly pain-free if I avoid sitting. I don't expect any more improvement, butt only time will tell. Still no date for the scan yet.

7 months

No improvement - if anything, slightly worse than last month.

7 months and 1 week

This last week has been bad. I'm in almost constant pain. I can't seem to get comfortable in bed. I seem to have a new pain about 1" above the regular one. I've still not been given a date for a scan.

I'm pretty sure now that surgery has not worked for me. Perhaps the surgeon was too cautious in removing only about half of the coccyx. So much for happy endings.

Update, 2008-02-03

My first surgery was 19 Feb 2002.

The bottom two (loose) sections of the coccyx were removed, but without any improvement. Not that I was in a great deal of pain; if I severely rationed my sitting, there was no pain to speak of. Butt I wanted the sitting part of my life back. The crazy thing is, my surgeon had planned to remove 3 sections - right back to a supposed arthritic joint - butt removed only what was loose. So, a good 18 months on, I'm going back under the knife. Will it be successful this time? Only time will tell.

2nd Surgery - Day 1 (9 Sept. 03)

I was first on the list and had the op at about 9 am. As before, I asked for a cordal (epidural) as well as the general. When I came round, the surgeon told me that the 3rd section WAS slightly loose. I was back on the ward for 9.45 - no pain, just a little groggy. I must have slept a little, as it was soon lunchtime. I'd asked if I could go home the same day - I find hospital beds very uncomfortable. I ate a good dinner at 6 and went home at 7, lying on my side on two sleeping bags in the back of the car.

Day 2

Having a lazy day, eating, reading, sleeping, typing this. The pain's pretty much as the first time; bearable, with the help of some paracetamol. Walking seems a little easier than I remember. I think I need a laxative.

Day 3

I removed the dressing myself, and took an upside-down look in the wall mirror. Practically no visible bruising this time. Last time, my butt could have been framed and hung in the Tate Modern. The laxative worked - 3 times! No, it didn't hurt. In fact it took away some of the pain. I find it's best to complete the mission standing up (Dambuster's theme tune optional). I think I'll have my first shower this evening. I'm sure to get the wound wet, butt I'll have my wife standing by, ready to give me a blow-job with the hair dryer.

Day 4

I think the shower and blow dry must have shrunk my stitches; they've been feeling more like staples - the big ones that hold cardboard boxes together. Managed a little walk along the road today though. I even overtook two snails. My hips are getting sore from lying on my sides. I lie face down a lot. If I drop something on the floor it stays there until someone else picks it up.

Days 5 & 6

Seems to be getting more painful (it did last time). Hopefully it's just the stitches biting.

I'm assured that, wound-wise, everything looks fine. I'm exceeding my painkiller dosage slightly and groaning regularly for maximum sympathy.

Day 8

Had the 6 stitches removed this morning. My wife came along to lend a hand (two hands just ain't enough). It hurt, butt I knew it would. They were 'very tight', apparently, butt I'm 'healing nicely'. I'm to keep the area well rinsed with warm salty water. It's nice to be rid of the stitches, butt I'm still hurting. Though I find it's easy enough to deal with pain, if there's nothing else to deal with. The salt water helps.

Days 9 to 11

Taking fewer painkillers. The pain's usually worse in the evening. I think it's nerve pain - wiggly worms squirming about under the skin, or a burning sensation.

Days 12 & 13

Still quite sore but walking better.

3 weeks post-op

Still sore at times but slowly improving, and doing slightly better than last time, I think. As ever, I'm finding things to do to keep me on my feet - best of all, water-colour painting. It's completely absorbing and if I'm hurting, I soon forget about it.

5 weeks post-op

Week by week, I'm improving; stopped doing the funny walk, and able to go up the stairs two-at-a-time again. I find I can lie comfortably on my back for long enough to fall asleep, though if I do, I wake up feeling quite sore. I'm walking further each day - I'm probably good for about 3 or 4 miles now. I think it's time I tried sitting - maybe tomorrow. No plans to return to work for at least a couple of weeks yet.

People are beginning to ask if the operation was a success. I tell them I may not know for a year or so. I've learned to be a patient patient (it's 3 years this month since my coccydynia started).

7 weeks post-op

I've begun to experiment with sitting, and so far had fairly good results. Yesterday I drove the car for 4 minutes, and today I sat for a total of about 8 minutes. Still using my coccyx cushion though. Butt I'm cautiously optimistic. (I've learned to be cautious, as a bad day can easily follow a good one)

10 weeks post-op

Last week I saw my surgeon. I made his day by taking my cushion and sitting for two minutes. I sit for meals now and I'm driving again, and I'm off back to work tomorrow (walking though, not driving). Yesterday, despite two half-hour drives, an 8-mile hike and sitting for dinner, I was almost pain-free and took no painkillers at all. Today I've felt a bit sore and made things worse by going for a haircut, so taken a couple of Ibuprofen.

3 months post-op

Going back to work set me back a week or two but I'm back into my usual routine now. I still have good days and bad days, though the good days seem better than before and the bad days are fewer and not as bad as before. My friend, Rory, thinks I'm well on the road to recovery. I hope he's right, but if he is, I'm thinking it'll be a long road and that I'll need to stop for petrol a few times along the way. Butt the bottom line is: I've got over this operation much quicker than the first one, and though my sitting time is still rationed, I am, week by week, sitting a little more (but always with the aid of my cushion).

4 months post-op

Week by week I notice small improvements. The main thing is that when I gently 'push the boundaries' by sitting for longer (still with my cushion) any discomfort/pain is soon gone, i.e. no lingering pain later. As ever, the best place to sit is the driver's seat of my car.

5 months

Not doing too well, I'm afraid. Since about 4 months and 1 week, I've noticed I have more discomfort/pain from sitting - not a serious flare-up, but enough to make me realise that progress can stall, or even retreat, for a time. So I recon I'm back to where I was at about 3 months.

6 months

The minor flair-up lasted about three weeks. Now I'm back on track, I think. Having read some of the recent postings, I'm reminded that there are many people who would be glad to be where I'm at - still rationing my sitting, but close to pain-free - but I'm still well short of my stated target of 'getting the sitting part of my life back.'

7 months

After that last setback (see 5 months) I was thinking: this is like Snakes and Ladders; improving step by step, or rung by rung, then sliding down a snake, back into discomfort/pain. Now I'm thinking the same again. Only a week ago, I was doing great, sitting for two or three hours a day. But I must have been overdoing it, as I've slid down another, very long, snake and lost about four months' progress.

8 months

Perhaps more time will make a difference, butt I think not; I've not slid down any more snakes, but I don't seem to be climbing any ladders either. All I can say is: the second operation was an improvement on the first, butt butt butt, I'm still standing to type this.

10 months

Well, 2 months on, and after being made redundant, butt finding a similar job almost immediately, I'm not doing too bad; despite having to travel 3 or 4 miles to work (as opposed to a 5 minute walk). It's a desk job butt with a fair amount of legwork attached, so it's just a question of balance (a little sore foot versus a little sore butt). I can't claim much in the way of improvement, butt at least no 'snakes'. My surgeon and I remain cautiously optimistic. (Me more cautious than him).

12 months

Yes, time flies, and a whole year gone. And I'm really not doing too badly at all; far from cured, butt a lot better for this second operation and, apart from a current flare-up, still improving. No significant pain, and, pre flair-up, sitting for up to four hours a day now. As ever, there's still a connection between bowel and coccyx (or what's left of it) - keeping it empty is the best policy - and that's as good as excuse as any, for a daily pint of Guinness.

All the standing (almost four years of it) has made me fitter and strengthened my lower back, so that the lumbago I've suffered from for over 30 years is much less of a problem.

14 months

I think I'm continuing to improve, though it's hard to tell at the moment as I'm out of work again and therefore doing lots of coccyx-friendly things, like decorating and gardening. So no pain and hardly any discomfort - maybe a little after driving for an hour or two. I saw my surgeon for the last time (I hope) yesterday. We're agreed there's nothing more he can do for me, so I'm discharged.

Old habits die hard though: I'm still standing at my computer, standing to eat breakfast, sitting on my hip to eat most other meals, and always using my cushion when I sit - to do otherwise would seem odd. Maybe I've evolved into a new species: Homo-erectus-most-of-the-timeus. I think I may leave the cushion in the car when I go for job interviews though, as I think it's hampering my chances.

In short: I'm glad I had the second op, and with other controls (cushion, plus only sitting when I have to, or want to) I'm (dare I say it?) pain-free.

16 months

First the good news: I've found employment. Now the bad: Driving to and from work (approx. 35 minutes per journey) plus sitting, for at least part of the time, at work (it's a desk job) has brought the pain back with a vengeance. Even sitting on my hip, with my feet up, causes a burning pain at the bottom of the spine.

I've been back to my GP (family doctor): "Okay, it's been over 4 years now. We've tried waiting. We've tried pills. We've tried injections. We've tried surgery. Butt I still have a major PITA if I behave like a normal person and sit down on a regular basis. Where the f**k do we go from here?????????"

Naturally, she didn't know the answer. She's going to get back to me. I'll keep you posted.

20 months

She got back to me with a recommendation, from my ex-surgeon, that I sit less. Wonderful! I saw another GP. He agreed to try a neurosurgeon - I'm on the waiting list. Now, I don't mind waiting lists. I just wish I could get to the end of one and find something worth waiting for. It'll be 5 years in October since that odd little pain at the tip of the spine began to germinate and grow.

Meanwhile, my wife takes me to work most days or I get a taxi (the drivers don't mind me reclining on the rear seat); though I can cope with driving a couple of days a week if I go early and miss the worst of the traffic. And at work I'm very busy, so the days fly by.

22 months

Not much to report. I've been reading the t-bones postings re surgery - the debate goes on, and on…

I'm glad I tried surgery and don't feel any worse for it, butt I'm still 'compensating' i.e. standing a lot and using a cushion to sit, and lying in the back of the car on long journeys. Doing nothing / relaxing is the hardest thing to do, though I sleep well - even on my back sometimes. If I stay on my feet and keep moving I'm fine. I'm still waiting to see a neurosurgeon. Meanwhile I'm seeing a physiotherapist, as I have tendonitis in my left Achilles tendon.

3 years

Yes, it's three years - I guess I've been neglecting my journal. My tendonitis failed to respond to the physiotherapy, but after one year the pain went away - if only the PITA would do the same.

I finally got to see the neurosurgeon butt he had no answers other than to refer me to a colleague in Liverpool. He gave me a thorough examination - too thorough - it made me sore and the soreness gradually got worse to the point where a planned holiday in Greece had to be cancelled. So there's a warning: don't let doctors prod and poke; just point to where it hurts and say, "That's where it hurts, doc."

Meanwhile a new GP I'm seeing thinks I have nerve damage and therefore false pain messages. He put me on Gabapentin to interrupt the messages - it made no difference, even at max dosage. So now 'we' are trying Capsaicin cream. Anything's worth a try.

3 ½ years

The Capsaicin cream didn't work, but my new doctor suggested Amitriptyline tablets and, at last, I have something that makes a difference: I take two 25mg tablets at bedtime, sleep like a log, and stay almost pain-free and able to sit a lot more. I'm also taking Glucosamine supplement; which may be adding to the good result.

4 years +

I'm still doing well on the Amitriptyline (now one 25mg tablet per day) and the Glucosamine supplement, and gradually sitting more and more; so I'm no longer pestering my doctor for answers.

If you came here looking for answers, and you haven't yet tried Amitriptyline and/or Glucosamine, maybe you should. I'd be pleased to hear from anyone having success with either.

Update, 2017-08-27

This is a reply I recently sent someone considering surgery:

Hi, 'miserable existence' just about sums it up - I remember it well. Yes! It is mostly in the past now, but it was a long, and very depressing at times, journey. And the caudal injections did nothing for me (or for others I heard about).

If you read all of my post, you will have seen that I had the surgery twice: the first time making the condition worse because only 2 of the 3 mobile bones were removed. After the second surgery (and third bone removal) about a year later, things slowly improved. I think it takes time (months, years even) for the nerve endings to settle down and/or for you to find the best pain-killer.

I still use Amitriptyline, though I've halved my dosage, and I'm never without my triple-C coccyx cushion, plus I tend to stand a lot out of habit (including at my pc). But I more or less lead a normal life now: driving, except on long journeys, flying, but not long-hall, and eating in restaurants. And I've not had the characteristic going-from-sitting-to-standing pain for years.

If you are considering surgery, finding the right surgeon is probably the main thing. And the sit/stand x-rays are well worth doing, to see what moves.

Any more questions, feel free to ask.

Ian

Guiseley, UK

I do it standing up




Shots helped until one went wrong

Irina - idesiatnikov@yahoo.com

Hi, my name is Irina. I am 27 years. It is almost 2 years since I started  to experience pain in my coccyx area. I gave birth to a beautiful girl in January of 2001 and since than I have been in pain.

At first the doctors kept telling me that they don't really know what that is. I went to about 4 different doctors. I did physical therapy which didn't help. Had an MRI done - which was perfectly normal and still was in pain. Finally I went to a pain clinic where my doctor ordered the pain blockers done. They first one helped me for 3 days, second one didn't help at all and the third one helped for about three weeks. I went back to my doctor and had the 4th shot done. Something went wrong during the shot and he had to do one more time right away. I am in so much pain now - 3 times more than before the shot. I don't know what to do!!!!

I am only 27 years old. I can't enjoy my life anymore: can't go to the movies with my husband, can't go out to the restaurants. And now and I am in more pain than before the shot. I am very scared of the surgery and the doctor actually doesn't want to do it. I don't know what to do anymore. Reading other peoples thoughts helped me realize that I am not alone but it still sucks!

Irina

Updated 2002-10-13




Coccyx trouble or tarlov cyst?

Iris Peakman

All my trouble started four years ago when I hit my tailbone on the end of a couch. I started having pain in my sacral area and tailbone area that put me in bed for two weeks. Every year in the spring when I increased my activities the pain would come back, two years ago the pain got so bad that I began a series of going to doctors none stop.

My pain increases with too much sitting, walking too far, climbing stairs, doing any raking, having bowel movements increases the pain in the tailbone buttock area, the time around my monthly's the pain increases, standing too long, and I have also had bowel trouble with certain foods like milk, cheese. I had a colonoscopy to rule out cancer and my doctor said I had a case of IBS, I had never had this trouble before all these other symptoms appeared.

To make a long story short I have gone to so many specialists over the last two years and I have been off work for one year because of the pain and lack of tolerance of these activities. Last July I had a MRI that showed a tarlov cyst on the S2, S3 nerve root. I have been to two neurosurgeons one said that the cyst was the problem the other said that the cyst was not large enough to cause all the trouble and it must be a case of chronic coccydinia.

Upon exam the right buttock was tender and the area around the coccyx and the coccyx itself was tender enough to make me flinch. I have other symptoms as well; I have the feeling of bladder infection with no infection evident with medical tests. I am writing to see if any of you have had similar symptoms with just the coccyx being diagnosed. I am on a mission to try to find answers as this is a terrible condition to live with, and if any of you have anything that has helped you.

Thanks for listening.

Iris Peakman

Updated 2002-05-12




Puzzling x-ray

Jamie dontyaknow@hotmail.com

Original posting, 2002-11-24:

In July 2002 I was on a long bus ride from Minnesota to Florida. While I was sleeping on the bus, my coccyx area began to throb in sharp stabbing pains. I woke up a number of times and could hardly move myself in my seat because the pain was so intense and it brought me to tears a few times.

Ever since then I have been experiencing a sharp stabbing pain in my coccyx area whenever I am sitting for an extended period of time. This is usually when I am at church, in my car, or at a movie (which are things I do VERY frequently as I am at church 3-4 days a week and I am always in my car). I do not experience it at work very often as I make sure I am constantly up and out of my seat moving around. I am also the type of person who cannot sit still for very long, so that helps relieve the pain at work.

I went to a chiropractor in August and I told him about the pain. I told him that it hurt in my bottom and he instantly began to do deep muscle work which relieved some of the pain. When I could no longer afford to see him, I stopped going and the pain quickly came back. At the time I didn't think it was my t-bone but just tight muscles and my chiropractor had no clue himself.

A few days ago I went to my PCP and he examined me. Although it did not hurt when I went there, when he pushed on the area where my coccyx is, I nearly leapt off the table from the pain the pressure caused. My PCP did some x-rays and showed them to me. Although he did not say exactly how, he did say that I injured my coccyx somehow. At the time I could not explain how because I don't ever recall it ever hurting before that long bus ride. While looking at the x-ray he did see some white substance between two of the bones and he could not explain to me what it was. He did not feel that it was cancer or a tumor but that he wanted to send it to a radiologist to find out what it was. He did question that maybe it was osteoporosis (which makes no sense since I'm only 24 and I am the biggest consumer of calcium in the world!!!) I'm still waiting to hear back from him.

Yesterday I think I figured out the source of the pain. I started to bike ride in May. I recall a numbness in my lower body after I was done riding but I don't ever remember my coccyx hurting after. I think that maybe the bicycling caused friction to my coccyx and injured it. I haven't ridden much since then due to the cold weather here in Minnesota.

I have had this pain for 5 months now. My doctor said I had two options: 1. to have the radiologist look at the x-ray and wait it out or 2. speak to an orthopaedic surgeon. If anyone has any advice, please let me know. I decided to do #1 and see what the radiologist has to say.

Does this thing heal itself? Should it even take that long to heal? Most people who injure their T-Bone, it heals within 6 weeks! Who knows.

Update, posted 2003-02-23:

The radiologist did not see anything wrong with my coccyx but recommended I go see an orthopaedic surgeon. I went to the orthopaedic surgeon in December 2002 and he diagnosed me with coccydynia. He set up a treatment plan with a series of events that would occur. First we tried Celebrex. That did not relieve any of the pain. Then a few weeks later we tried Vioxx. That did not relieve the pain either. In fact, they only temporarily helped but when I sat for longer than an hour, intense pain would occur. On two occasions within the past month I have been so sore that I have had to drive home from somewhere in the most excruciatingly painful position and I was in tears the entire way. I have never felt so much intense pain ever.

I called the OS and he suggested the next step in the treatment plan, a cortisone shot. This appointment is tomorrow and I am quite nervous about it as I know of a few people who have had these shots and they tell me they are quite painful.  Sunday my coccyx was hurting so bad, I took a medication that I was given for a problem I had at the beginning of the year (new year's eve) which placed me in the hospital over night (unrelated to my coccyx) as I had an air bubble trapped between my lungs and heart. That hurt extremely bad to the point where I couldn't breath, eat, or lay down. They gave me a prescription for oxycodone (percocet), which is the drug I took on Sunday and it was EXTREMELY EFFECTIVE with the coccydynia. Although this worked so well, I decided to do the cortisone shot anyway. I am too fearful of having a drug addiction. Although that medicine was successful, I have not taken it since because of this fear. I will post you on the results of the shot. But I can guarantee you that I am extremely nervous about it!




Acute pain when standing up after sitting

Jane - jking@cbpu.com

Hi, my name is Jane. I have had pain in my tailbone for almost 2 years now, it is getting to the point I have to be careful every time I sit, and when I stand after long periods of time sitting, it feels like someone is trying to kill me, it hurts soo bad. I can feel something pivot inside from time to time, depending on how I move.

Has anyone else ever had that sensation and what did you do? I have appointment with the neurosurgeon on Friday. Will let ya know what he has to say.

Anyone have any suggestions - I am open and tired of being in pain.

Note from Jon Miles:

This symptom, of a particularly bad pain when moving to a standing position after sitting a while, has been found to be associated with a coccyx that partly dislocates when you sit down - see Symptoms of coccydynia.

Updated 2002-05-05




Painful coccyx bone

Jean

I am a 45 year old female. Since November 2001 I had terrible pain in my butt. I have not had a fall, it just came on by itself. The pain was driving me nuts and by Xmas and new year's day I was standing most of the time, as it was very uncomfortable.

The doctor suggested to take a course of antibiotics which helped, but it came back. Then I took a course of anti-inflammation tablets which did nothing. Then I had an x-ray. It showed no damage to the coccyx area, but found that my coccyx was not fused properly when I was born. The next step I took was to get a CAT scan done, and that showed the coccyx was normal but it showed I had 5 large cysts on my ovaries, so I now have to look into that area also.

I am waiting to see a specialist in the coccyx area, and I have to see what the specialist may suggest. I am not making up this pain, as it is now starting to control my life. I am not going out as much because I can't sit for a long time, and I am not going away on holidays as you have to sit in the car and that would drive me nuts.

My family don't think I am that bad, as I still do all the household duties on my own and not bed-ridden. I find it better when I move around being busy and not thinking about it.

Jean

Updated 2002-04-14




Unusual symptoms?

Jeff - jcmorton@pacbell.net

Last March I started a new job which involved sitting a lot more than I was accustomed. I also chose to ride my bike to work each day which was a 12 miles round trip. Last October, I started to feel pain in my tailbone. After three months the pain did not go away so I saw an Orthopedic Surgeon who has given me three cortisone shots in the last three months. The shots have seemed to help the tailbone to some degree but I still have the feeling that when I sit on something soft (car seat) there is the sensation of a ball (or something like that) going up my rectum (not painful just annoying). Also, when I am lying on my back it's as though there were a small rock or irritating underwear tag pressing on my lower back right above where the “butt crack” would start.

Does anyone else have these symptoms? I am trying to figure out if the “rectum pressure thing” is part of normal tailbone problems or if the biking did some other damage.

Jeff

Updated 2002-03-10




Coccyx surgery

Jeff - jbrain29@hotmail.com

My name is Jeff and I am 25 years old. I started having pain in the coccyx while sitting in college 5 years ago. I did not know what caused this pain because I never fell or injured the tailbone area. I went to my primary doctor and he said there was nothing I could do about it. After about a year of pain, I went to a chiropractor who ordered x-rays. He said that my coccyx was longer than usual, and did some lower back adjustments, these did not help. It got to the point that I could not sit down or even lay on my back on a soft bed without feeling pain. This is when I went to a local orthopedic specialist. He ordered a MRI and suggested cortizone shots to the coccyx. I tried the shots about 3 different times and they did give some short-term relief (approximately 1 week) but not long- term. He sent me to another orthopedic specialist at the University of Miami. This doctor prescribed anti-inflammatory drugs and did a CT scan. The anti-inflammatories did nothing for the pain, and the CT scan showed no irregularities.

Finally, after 5 years of pain, and a couple of doctors later, my original orthopedic specialist recommended removal of the coccyx. So I made an appointment with a spinal surgeon at the South Florida Spinal Clinic. When the surgeon looked at my MRI he immediately said that I have an extremely long coccyx, and that I could either live with the pain or have it surgically resected. He said it is a rare, but simple procedure, and that there is an 80% chance of curing the pain. I asked him how many times he has performed this type of surgery, and he said he has done over 4,000 spinal surgeries but only 1 coccyx resection. I was hesitant to go ahead with the surgery because he only has done this once, but he felt and acted very confident, so I decided to have the surgery scheduled. Also, the surgeon advised me that he works in conjunction with a colorectal surgeon when doing this operation due to how close the coccyx is to the rectum. So I made an appointment with the colorectal surgeon who will be present at the surgery. This surgeon verified that I had a long coccyx and told me that he has done a couple of these operations in the past. He said it was simple procedure, but there is a slight chance of infection.

I had the surgery on 2002-04-15 at Holy Cross Hospital in Fort Lauderdale, Florida. I arrived at he hospital at 11 pm, registered and got prepped for surgery, then was wheeled into the waiting room where I met the anesthesiologist. He decided to give me an epidural block instead of putting me totally out, but I slept through the entire procedure anyways. I woke up just when they were finishing. Both surgeons said the surgery went well and that they removed approx. 2.5 inches of bone. My main concern before the surgery was that they would not remove enough bone, hopefully this was sufficient. I was wheeled to my hospital room at about 3 pm, and did not feel any pain. I stayed one night in the hospital and the only problem I had was urinating for the first time after surgery. The IV filled my bladder so much, but my lower organs were not working because of the anesthesia. Finally, at about 7 pm I stood up and slowly walked to the toilet, got very nauseous, then finally urinated. I felt great after going to the bathroom. I had a morphine pump and only had to pump it a couple of times throughout the night because I did not feel much pain at all.

The next morning my spinal surgeon checked in on me and said I can go home today. He said that the colorectal surgeon did most of the surgery and that he just cut and shaved the bone. I left the hospital on 4/16/02 at about 1 pm. I was lying on my side in the backseat of the car for the 30 minute ride home. The pain did start to kick in the night I got home, but the percocets worked very well for the pain. I tried to eat foods high in fiber and I took stool softeners at night because I know the painkillers make you constipated. I was not looking forward to my first bowel movement, it occurred on the 2nd day home after surgery, and surprisingly it was painless. I was able to walk around slowly and even upstairs, but my doctor said not to sit down for 3 weeks. So all I did for the first ten days was watch t.v. while laying on my stomach or my sides, and eat standing up. There was not much pain while standing, but I could only stand for short periods of time because my lower back would give out. I went to my post-op appointment 10 days after surgery and the doctor said everything looked fine and that the stitches will dissolve.

It is now a month after surgery and I can only sit for about 15 minutes at a time on an inflatable ring cushion before it gets too painful. The incision is healing fine and there was no infection, but I just can't sit yet, which is frustrating because I was planning on going back to work soon. I have a desk job and have to sit for about 8 hours a day and also drive a 1/2 hour to work and back, so this is going to be a problem. So far I am happy that I decided to have this rare surgery because there has not been any major problems, and it definitely has not been as painful as I thought it would be. Hopefully the pain when sitting is surgical pain and will eventually heal. I have already noticed that when I lay on my back the pain is less than before the surgery. From reading other personal stories on this web site I realize that I may have a long road to full recovery.

I want to thank Jon for setting up this very informative website, I don't think many doctors or chiropractors know much about this topic at all, so this site really helps. Feel free to e-mail me with any questions and I will update in a month.

Updated 2002-05-19




Burning and numbing feeling after surgery

Jen - yenjen6242@yahoo.com

I had my tail bone removed on 18 October 2002 and it is not getting better.

Did anyone experience burning and numbing feeling after the surgery? If so, how long should I expect to feel better? If anyone can give me some ideas on how to get through this, feel free to email me please.

Thanks

Jen

Note from Jon Miles:

It took me 6 weeks after removal of my coccyx before I went back to work part-time, and it normally takes months to a year to recover from the surgery. With this operation, you have to sit on the scar, and the pain of that makes the recovery much slower than for other operations.

Updated 2002-12-08




Tailbone HURTS!

Jenny - LiLKRaZeeGuRL@aol.com

Hello, my name is Jenny and I am 16 years old. My tailbone has been hurting for 7 months!! Some days it hurts so bad that I break down in tears, and some days aren't that bad. My mom keeps telling me that I need to go to the doctor and I would but the thing is, is that I don't like doctors offices and I don't want to go and "moon" the doctor LOL. I know it sounds really stupid, but I don't want some guy feeling all over my butt.

My tailbone really didn't hurt all that much over the summer unless I went swimming or I would jump up and down or run. And then I got a cold a couple days ago and when I would sneeze it would hurt. I mean it hurts to lay down, stand up, walk, and even lay on my belly. I have read so many tailbone stories and how some people have had surgery.

MY PAIN IS SO UNBEARABLE!!!!! But I deal with it, even though I really don't want to. I wonder if there is anything I can take without going to the doctor?? or maybe I do need to go to the doctor...AAAHHH Its so nerve racking!!

SOMEONE PLEASE HELP!!!!!

Updated 2002-09-08




Coccydynia after laminectomy

Jim M - jvorco@aol.com

I am a 50 yr. old male who recently (2002-04-23) underwent a laminectomy (no fusion) at L4/L5 for moderate to severe spinal stenosis, with previous classic symptoms of spinal stenosis, i.e.chronic low back/buttocks/leg/ankle pain, especially in the standing position. In terms of alleviating those symptoms, I guess you could consider the surgery a success in that those symptoms, as of now, are 95-99% gone.

However, within one week of the surgery I started getting a very localized specific pain in the coccyx, which has gradually worsened to the point where it is almost crippling at times. The pain can best be described as a very sharp, searing, "electric" type pain usually just a tad to the left or right on the end of the coccyx. Standard x-rays revealed no fracture, although the dynamic x-ray procedure was not used. The pain is usually brought on by bending or twisting, even slightly. The worst episodes are when getting into car to drive. When seated, pain is reduced, especially when I shift from one side to another. Standing is somewhat OK, except for climbing stairs or walking over a half mile or so.

My spinal surgeon (who is considered very good) has no explanation for this pain, other than to suspect that it is some residual or referred pain from the laminectomy, that hopefully will clear up..I am somewhat doubtful, however). I am on pain medication (Percocett, Demerol) which helps somewhat in that they dull the pain, bed rest (lying on my side) also helps. The surgeon has next recommended that I see a pain management MD for possible cortisone injection, which I am in the process of doing. Approx. 15 months prior to my laminectomy I was very active and fit . . . jogging (for 23 years), trail running, weights, hiking, biking, golf, etc. I now feel that I've done a complete "180" in that I can barely walk or bend many times.

Has anyone else had a similar experience or know of one? I would be most interested in hearing from you and possible solutions to the problem. Also, does anyone know of an orthopaedic doctor in the greater NYC/Philadelphia/NJ area who has experience in diagnosing and treating coccydinia? Responses would be most appreciated and thanks for this informative and comprehensive website.

Jim M. (NJ-USA)

Updated 2002-05-19




Shoulder pain

Jim MacKay - jim.mackay@ntlworld.com

I notice that someone else on the notice board has had shoulder pains before the onset of coccyx pain, well I'm the other way about. After 6 months of various probing a simple X-ray showed that my pains in the posterior were probably arising from a dislocated coccyx ( I kind of remember slipping and falling whilst hill climbing). I have since went on to get pains in my left shoulder/arm and occasionally in my right arm and across my shoulders. My coccyx is still in place for the moment, any similar stories/theories/cures?

Updated 2002-09-29




Outer ear pain related to coccyx pain

Jon Miles - jon@coccyx.org

Updated, 2006-01-29:

When my coccyx pain gets worse, my outer ears become sensitive, and feel uncomfortable when I lie on my side. I am talking about the ear-flap, the pinna or auricle in medical language, not inside the ear. Since posting this page, about 50 other people have told me that they have a similar pain, about half of the cases being associated with coccyx pain.

I spoke to my doctor about it once. He thought that it must really be my inner ear hurting. I don't believe that. It is sometimes just the tip of one ear that hurts, and only when I lie on it. Sometimes both ears become sensitive, and it spreads to the whole of my outer ears. But they don't hurt at all unless I am lying on them, and my inner ears have never hurt. This has happened more than a dozen times, starting a day or so after I have started a flare-up of coccyx pain. As the coccyx pain fades away, usually taking a week, the outer ear pain fades away too. It cannot be coincidence. Since I first posted this in 2002, my coccyx no longer hurts nearly as much, and I no longer get the outer ear pain.

Getting a pain in a different part of the body from where the cause occurs is called referred pain. The classic example is when problems with the gall bladder cause a pain in the tip of the right shoulder, in addition to abdominal pain. This odd symptom is used to distinguish gall bladder problems from other things that might cause abdominal pain. I suppose my ear pain is a similar thing.

No-one had any suggestion as to the cause, apart from one suggesting that all parts of the body are connected. One said "My doctor cannot explain it".

Here are some solutions that people have found for reducing the pain:

  1. Sleep with your head on the edge of the pillow, so that you can lie half on your face, without suffocating. That takes the pressure off the ear.
  2. Cut a hole in the middle of a pillow, and sew up the edges. You can lie with your ear over the hole.
  3. There are devices available to allow you to sleep lying face down - see Lying down to relieve coccyx pain (scroll down that page).
  4. Use a "Moshi" pillow (this is a small bean bag pillow with a stretchy outer fabric filled with micro syrofoam beads). Cover with a normal pillow case.
  5. One person found by accident that sleeping with a hearing aid in place avoided the pain. This person had ear moulds made by an audiologist, just for sleeping, and found them effective.

Addition from Anne, 2005-08-28:

I have had strong cartilage discomfort on waking for about a year now. Recently I began studying acupuncture and saw that according to this theory, this particular area of the ear is representative of the spine, in that problems of one will often manifest in the other. I myself have no back pain and just thought it was very interesting that you and many other noticed this association from first hand experience.

I also just wanted to let you know that acupuncture and herbs may be very helpful in this problem ( as is it for many health problems that stump western medicine). However I would add that it's very very important to go and see a well trained person with years of experience. For example, in the States to see someone with NNCOAM accreditation and outside of there I would probably stick to practitioners who are from well accredited schools or who are MD. in Chinese medicine from accredited Chinese/Vietnamese etc.. college's or hospitals. I stress this because, for example, in Canada, a person can practice with as little as a few weekend courses.

There are also advantages and disadvantages of seeing western versus eastern practitioners. Such as, an eastern practitioner may have much more training and practice in hospitals. However their English may be weak if they are newer to the English speaking country and they may give treatments that are a little less sensitive to western sensitivities. (Many Chinese people, for example, would be very used to the mild discomfort of needles and then get used to more stimulating sessions). I go to a great lady from China, who speaks very good English and is completely attuned to my western wussiness and my ears are now starting to be discomfort free 80% of the time.

Anne




Long tail bone

JR Kelley - JRKelley5@aol.com

Have you ever heard of a long tailbone? The doctors are saying that my spine is longer than usual. I've never heard of this before. I'm in severe pain, all the time, and nothing seems to help. If there is any info that you have or can refer me to, I would be so grateful.

I would love to get emails from anyone who would know of anything that I could do to help. Has anyone had surgery on this problem?

Thanks!!

See also Rachel Webb - Long, sharply angled coccyx

Updated 2002-01-13




Pregnancy stopped the pain

Judy Royle - judy@royle1.dircon.co.uk

Original posting, 2002-06-23:

In 1997, my husband and I were flying from the UK to Florida (about an 8 hour flight). I found I had to stand for the whole flight as it hurt too much to sit. Coming back, as it was a red-eye, I had to kneel in front of the seat and rest on the seat cushion and slept that way all the way home (much to the embarrassment of my husband!!). From that point on, I had a hard time sitting on any type of chair (hard or soft) and found sitting more on one buttock was less painful. I also found that changing positions while sitting was very painful (long meetings at work....) and going from sitting to standing.

I saw my GP who suggested I have an MRI as I had a pilonoidal cyst removed in 1977. He thought it might have returned. Nothing was found but the internist suggested I see a pain specialist for injections. These injections did help for a while (about 6 months a go). When I was due for another one, I found that I was pregnant (1999) and I didn't want to have any injections at that point. The wonderful thing was, with all the lovely hormones flying around the body while pregnant, I had NO pain!! Even at full term, I could sit and stand with out any problems. This pain free time continued up to about 5 months after my daughter was born (due to breast feeding??). Then it started coming back with a vengeance!!

I got more injections again but the time they worked was gradually less and less until finally they stopped. The pain specialist always mentioned how prominent my coccyx was every time I saw him. He thought I would be a good candidate for a removal.

I went back to my GP who then suggested I see a neuro-surgeon. He had never done a coccyx removal but he knew of an orthopedic surgeon who did. I saw him and he firstly suggested some physical therapy. Saw the PT and she also did some acupuncture (no luck there).

Having seen this site, I went back to the surgeon and asked about a manual manipulation and he said it would be a good thing to try before doing any surgery. Last Thursday, I had it done along with more injections. He came in to see me about what he found and said that the coccyx was moving very freely (shouldn't) and that it might be dislocated or fractured. If this didn't work, it would have to come out.

Well, if this is my only option, I'll have to get pregnant again quickly (we want another child) and then think about removal after that. I'm back at work today and I find that I have to sit forward because I'm still too sore to try to sit normally. I've ordered a tush cush from the Back Shop in London to see if that helps.

I see the doctor again a week from Thursday to see what he thinks/says. I'll update then.

Regards,

Judy Royle

Update, posted 2002-07-07:

Saw the surgeon last Thursday as follow-up of the manipulation. I told him that there has been no improvement (and at other times it's been worse).

He told me I had no other option now other then to have the coccyx removed. As it moves around freely (and it shouldn't), he feels that it's probably broken. Recovery time would be 6-8 weeks.

As we want to have another child in the next few months, I told him that I probably wouldn't have anything done until next year.

Watch this space.




Yoga for back and coccyx pain

Judy Isaacson - jlisaac@austin.rr.com

I had intermittent back problems, including coccyx involvement, until I discovered yoga. It has helped me more than anything. I highly recommend it to anyone suffering with chronic back pain. It is a non-competitive activity; each person goes at his or her own pace. There is no pressure to do more, as with some exercise programs.

I am not a medical professional, but I know what yoga has done for me. I urge back sufferers everywhere to consider yoga as an excellent therapy.

Judy Isaacson

Sunset Valley, TX (Austin metro area)

Updated 2002-09-08




Coccyx is a sore point!

Judy Grant

Hi Jon,

I came across your website quite by accident. I happened to look up the term "coccyx" on the world wide web, hoping to find medical research as to the causes and possible relief of this perpetual ache in my tailbone, and thankfully found your support site for coccydynia sufferers. What a relief to know that this is a fairly common condition - I thought I was an isolated case! I have had "coccydynia" for over a year now - ever since I gave birth to my son in April 2001. (My pregnancy was normal, without much discomfort other than swollen hands and feet from water retention.) I ended up having a caesarean section after 14 hours of unsuccessful labour - thankfully with an epidural, and was sent home after 3 days with the usual post-partum painkillers and anti-inflammatories. The coccyx pain was barely noticeable initially, and I'm sure the painkillers masked a lot of the ache, but then the pain became steadily worse. I even battled to do the "kegel" exercises to help my pelvic floor recover from the pregnancy however I adopted the "grin-and-bear-it" approach, thinking that my body was still recovering from the birth. This lasted for 12 months until I was practically unable to sit normally.

In desperation I consulted my GP who sent me for X-rays. She showed these to an orthopaedic surgeon who indicated that the pain was caused by a displaced tailbone, ie. the coccygeal vertebra V points off to the left. It is suspected that I displaced the vertebra during labour, although my gynaecologist advised me on my most recent checkup that I may have been born with a misshapen coccyx, which was aggravated by pregnancy and labour. I was given 3 choices for pain relief: buy a doughnut-shaped cushion to relieve the pressure on the area when sitting, have a cortisone injection to relieve the pain - would work for 3/4 months, or have my tailbone removed. The doughnut-shaped foam cushion does help to a certain extent when I'm working on my computer, but I personally find it impractical for driving. (I have been spending a considerable amount of time at my computer lately - sheer agony - hence my visit to your site.) I'm planning to have the cortisone injection into my coccygeal vertebrae as soon as the orthopaedic surgeon can see me. Failing that, I will consider surgery to remove the offending bone! (Problem is, I also teach dancing and experience very little pain or discomfort during this activity.) If I have the surgery, I believe I will have to take it easy for 4 months or so - not much dancing can be done, I'll be unable to drive long distance to see my family in another province, and many other no-no's.

The worst part about this whole issue is that people around you cannot identify with your condition as there are no outward or visible symptoms. I enjoy theatre and movies but dread sitting in a seat for 90 minutes at a stretch. One battles to mask a grimace when shifting to another sitting position, and yes ... tight jeans aggravate the pain. Hard chairs are also preferable to soft, cushioned ones. My husband puts it all down to part of the ageing process, but I'm an otherwise fit, healthy 35-year old.

Best regards,

Judy Grant

Updated 2002-09-08




Tail bone pain and Crohn's disease

Judy - Judybrose@hotmail.com

I have had pain the tail bone for awhile, I also have Crohn's disease, in remission. From remicade I was on Vioxx it elevated my liver. I am now on Darvocet.

Is there anything else? Everything upsets my Crohn's. I am so stuck.

Thanks for letting me vent.

Judy

Updated 2002-12-01




To all tailbone ailers

Julie - jwillie92@hotmail.com

Listen, I am 31, I have had tailbone pain for as long as I could remember. Over the years it got worse and worse, I finally went to the doctor (the first time) to have him press hard on my tailbone and then tell me it was arthritis in my lower back, huh??? My lower back wasn't the problem, it was my tailbone.

After many months and many different "arthritis" medications I decided to do my own research online. I read something on coccydynia and it described EVERYTHING I have always felt, bad menstrual cramps, hard third trimester in pregnancy, not being able to sit, etc. I had all the ailments. I got a second opinion (without telling the doctor of my research) and he came up with coccydynia. I was soooo relieved. He was surprised the first doctor didn't do a rectal exam. By doing this, they pushed on my tailbone from the inside. At first it hurt, but do you know that after the initial hurt it actually felt much better for awhile, but sitting caused the pain to come back again. Doctors don't know enough about coccydynia to always come up with that with our descriptions of our problems. They need more education on this.

My main reason for writing is to say, get it fixed asap. I have had this problem for over 15 years and it if only getting worse. I am in the three shot process of getting rid of the pain. So far, I have only had one shot. It has been two weeks and my pain has tripled from what it was before the shot. I am crying, crabby, frustrated, depressed. It is so hard to have pain constantly, every day/night, go to bed with it, get up with it. Deal with it all day, it is hard.

GET YOURSELF FIXED ASAP!! It is a hard life that many don't understand. The worst part about it is insurance only pays for 60 pain pills a month. Guess what? Only two a day doesn't make the pain go away.

It sickens me to know that my pain relies on people that can sit without pain, anytime for any length of time. They just don't get it. And I am so tired of being in pain. So desperately tired of pain. I would like ONE DAY without pain. JUST ONE would be nice.

Updated 2002-10-06




Bowen Technique, Anybody helped by acupuncture or injections?

Karen - KINDERCOP4@aol.com

Original message, posted 2002-01-20:

All I can say is thank you thank you thank you. I truly believed I was going mad! Then I found your website.

This has been a depressing and painful ordeal for me. No need to review all the doctors and tests I have been through but finally with a file folder of information in hand from your website, visited the last doctor yesterday. I had insisted on coccyx and pelvic MRI as suggested by my chiropractor, he hit the problem on the head long ago but suggested I pursue a few other tests (female in nature) to be thorough. I demanded a dynamic x-ray from my GP with all the info from your site. He agreed but the local hospital would not do it. They said this was absurd and never head of this before --HELLO!!!!! Needless to see they didn't want to look at the sit stand x-ray material and sent me and my coccyx on its way.

Had a follow up with a neurologist that the neurosurgeon sent me to because he had no clue, and neurologist called for the coccyx MRI findings. He said, coccygeal lordosis was a show on the MRI- he being the neurologist gave me an explanation of what that was as well as went further to tell me that NO I was not mad, his mother had the same thing many years ago and suffered. He recommended a few days of lowest dose valium to relax some of the tight muscles around there along with a weeks worth of Vioxx and also recommended very nicely that I see my chiro and let him do an internal adjustment. He said he highly recommended this as it helped his Mom immediately.

I am thinking of trying the Bowen Technique first to see if that helps. Has anyone here had any good or bad experiences with this?? I have found a practitioner who is willing to come to my home and said 2 treatments is all it should take!!! I am very skeptical but would love to hear more info from your readers on that and there feelings on the Logan Procedure (good or bad).

Thanks so much for helping me

Karen

For Bowen Technique and Logan Procedure, see Gill, Louise Lucas, Carol, Tanya, Anonymous.

Update 2002-03-31:

Hi,

Still miserable and suffering with no relief in sight. Please contact me if you have had any luck with acupuncture or cortisone shots for your coccyx problem as I am contemplating each one of these. Would like to hear your story with these.

Thanks,

Karen




Coccyx removed, but pain was caused by Tarlov's cyst

Karen - DKWESTING@aol.com

After 3 years of injections, medications and physical therapy I had my tailbone removed 16 months ago. Bad decision! I am in worse pain now. I was referred to a pain doctor, they did more injections (no relief).

I recently went to a chiropractor. He found a Tarlov's cyst in my S2 region on my pre surgery MRI and post surgery. He believes the cyst is the cause of my pain. He explained the reason it got worse after surgery is because the cyst has grown.

I am in the process of seeking a neurosurgeon for advice on the new findings.

Best of luck to all of you, I feel your pain.

Karen

Updated 2002-11-17




Coccyx does not show on x-ray at all

Karen - karenymartin2002@hotmail.com

Hello, my name is Karen and I've been experiencing coccyx pain on and off for years. The pain has sometimes been excruciating and is getting worse.

Initially I didn't realize were the pain was originating. I had a total hysterectomy a couple of years ago and the doctor was 95% sure that this would eliminate my pain. It didn't. I was having rectal spasms and went through all the testing, and now my GP sent me to a pain clinic. I've been getting cortisone injections and they seem to help on a minimal basis. The doctor did an epidural and x-rays the last visit and she says it appears to her that my tailbone is broken off or turned inward at a 90% angle as 3 x-rays didn't find it at all.

My question to you and yours: Will a caudal block be effective if my coccyx is broken off? It sounds to me that the only alternative would be removal. Can anyone make a suggestion as to my next step?

Note from Jon Miles:

If they can't find your coccyx on three x-rays, then maybe you haven't got one, or it's very small. I would want to have a second opinion about this, and maybe an MRI or CT scan or high-resolution x-ray, to be certain what the situation is before having any operation.

Updated 2002-12-15




Tailbone removed 17 years ago - worth it, but pain now getting bad again

Kate - Bob_ellentooth@worldnet.att.net

In 1985, my tailbone was "shattered" during childbirth with the use of forceps unnecessarily. The Kaiser Permanente-Sacramento doctors treated me as a woman who was unable to handle childbirth. My son was born in August, 1985. For 9 months, I was unable to sit or stand without assistance. Literally, someone had to lift me up and set me down. Doing so myself caused such extreme pain, I would almost pass out. Being a new mother, it is nearly impossible to express how this pain effected me. During those 9 months, x-rays done by Kaiser were "too blurry" to show damage to the tailbone or any cause of my pain. I finally went to a chiropractor whose x-rays showed a fractured coccyx. I took those x-rays to Kaiser and still was only sent to physical therapy.

Only after calling the Administrative Offices and threatening a lawsuit, was I allowed a referral to an orthopedic surgeon. I went to see him in March, 1986, he said, "I want to watch you for a while". After a month and nothing had changed, he removed my coccyx. At the time, I had a friend who was wheelchair bound and would literally lift herself up and plop herself down on her bottom in the chair. I remember crying while visiting her and wishing I could do that. I still cannot!

The orthopedic surgeon told me that my tailbone was broken in three different pieces, pointed straight down, and would have NEVER healed properly. Since my surgery, 17 years ago, I have continued to work until recently when the pain finally got to point it interferes with EVERYTHING I do. Being a single mother for 12 of those 17 years, I had no choice but to work, PAIN OR NO PAIN.

No longer can I sit for over 15 to 20 minutes without the pain getting to a point I must get up. I cannot stand without pain in my lower back and tailbone area. I cannot walk long distances without extreme back pain. Simply shopping causes extreme pain. If I did not have to shop for groceries, I would not. I cannot drive without pain in the tailbone area and my lower back. If I sleep for over 5 hours, I have to have help getting out of bed due to lower back pain. In order to even get those 5 hours of sleep, I take Naprosin or Motrin. During the day, I take Tylenol because Naprosin and Motrin causes me to get sleepy. Some days, I can barely walk, let alone consider working.

As for having the surgery, my incision got infected and I had to spend two weeks in the hospital on IV antibiotics. Because the incision runs up the "crack" area, it is endanger of infection from the rectal area. So be careful with cleanliness after surgery. The bacterial infection can lead to death if not treated immediately. [Note from Jon - this is a real but rare risk with any surgery. I have never heard of it happening after coccygectomy, and it didn't happen in any of the 200 operations reported in the medical papers that I have studied.]

As for recommending the surgery, YES, without a doubt. The pain I was in before the surgery was of such that life would have been impossible. The pain during the years after the surgery was of such I was able to work through it. I have had 17 years without extreme pain. For that I am grateful.

Now that the pain is returning, I do not know what can be done for relief. This may be something I will have to live with the rest of my life. From all my research and speaking with untold number of doctors, I am at a loss as to what can be done.

I was an Executive Secretary for 30 years and now I cannot earn a living due to the pain. I have taking a job as a cashier, but was unable to tolerate the pain in my back from standing and lifting.

I would love to correspond with others who have had long term results from surgery, both successful and unsuccessful.

Remember, just because most doctors treat you like you have lost your mind, DON'T GIVE UP. There are those doctors who can and will help.

Kate

Updated 2002-06-09




Had coccyx removed - great results!

Kathy Ovide - kovide@fkaa.com

After 21 years of intense pain and inability to sit longer than 20 minutes, I had my coccyx removed last year by the new, less invasive procedure. I walked 3 hours later, went home 2 days later and was back to work part-time in two weeks. I had muscle spasms in my legs for about 4 days the week following surgery. After 3 months, I could sit approximately 2 hours and 8 months later I can now sit for longer durations - up to a full day in a comfortable chair/vehicle.

My surgery was performed by Dr John Nordt of South Miami, Florida, 427 Biltmore, Suite 100, Coral Gables, FL 33134, Phone: (305)662-2851, Fax: (305)662-2532

It was the BEST decision I've ever made - I truly do not have pain any longer.

The coccyx is generally removed by cutting through the lower back, cutting the gluteus maximus, and working past the nerves to get to the coccyx. This results in a lengthy healing process and poses a greater potential of damage to the muscles or nerves as they are manipulated. However, the new procedure is to cut at the top of your buttocks crack and go up behind the gluteus maximus to extract the coccyx and slide it back down and out of the lower incision. I only lost a teaspoon to a tablespoon of blood, I walked that same evening, and was released from the hospital after only 2 days. I had mild muscle spasms for 4 days about 1 week after my surgery; otherwise, I had minimal discomfort during recovery. I am truly amazed at the relief which has come from this surgery and my ability to enjoy life again - I still won't get on a bicycle but I believe that is because of the bad memories of how painful it used to be.

Without being too personal, I'll add that for about a year before the decision was made to remove my coccyx, I had some strange symptoms which disappeared after my surgery.

  1. I was having a problem with bowel movements and had consulted to no avail with a colon specialist (it was found during surgery my bowel had crimped along my misaligned coccyx and my bowel functions returned to normal after the coccyx was removed)
  2. I was having significant female discomfort which also ceased after surgery
  3. I was having pain and weakness in my legs which ceased about 2-3 months after surgery.

My orthopedic surgeon performed a series of x-rays from the side with me sitting and then standing to capture movement and alignment of my coccyx. He found it broken and sitting at a 45 degree angle in towards my body. There is no explanation as to what caused this - I did have a slip and fall years ago and I also had back labor during childbirth. But the pain I was experiencing was horrific - I often felt like I had a ball of hot metal inside me. I know that coccyx removal is not for every situation - but I am so thankful that I had mine removed and removed by this less invasive procedure.

Updated 2002-07-28




Fractured sacrum & T10 vertebra

Kat L - katandbryant@yahoo.com

Greetings!

I fractured my sacrum & T10 vertebrae in a construction accident on May 11 2002. The sacral fracture was an unusual "U" shaped compression fracture. I was on narcotics for 13 days, then the doc started me on Neurontin, 100 mg. I also take 2 Ibuprofen with each dose, because of other "related pain" -- coccyx, spinal, & buttock pain. This does a fair job, I would say.

I'm wondering how long I can keep up this regimen? I read on the Pfizer website about all the side effects during trials. Death and pancreatic tumors were listed. I only have drowsiness and just the feeling of being "dense". There is an extract from it below.

Does anyone have other medications that have worked for them, with similar bone fractures & coccyx pain/burning?

Thank you,

Kat L.

From the Pfizer website, discussing possible risks of Neurontin (Gabapentin):

Carcinogenesis, Mutagenesis, Impairment of Fertility

Gabapentin was given in the diet to mice at 200, 600, and 2000 mg/kg/day and to rats at 250, 1000, and 2000 mg/kg/day for 2 years. A statistically significant increase in the incidence of pancreatic acinar cell adenomas and carcinomas was found in male rats receiving the high dose; the no-effect dose for the occurrence of carcinomas was 1000 mg/kg/day. Peak plasma concentrations of gabapentin in rats receiving the high dose of 2000 mg/kg were 10 times higher than plasma concentrations in humans receiving 3600 mg per day, and in rats receiving 1000 mg/kg/day peak plasma concentrations were 6.5 times higher than in humans receiving 3600 mg/day. The pancreatic acinar cell carcinomas did not affect survival, did not metastasize and were not locally invasive. The relevance of this finding to carcinogenic risk in humans is unclear.

Note from Jon Miles:

No drug is without risk, and most drugs have possible serious side-effects listed. But such effects are very rarely seen in practice, or the drug companies would not be allowed to sell the drugs. In this case the pancreatic cancers were found in male rats given very high doses of the drug, but not in female rats or in mice.

Updated 2002-11-03




Mountain bike accident

Kelly - knutkc@aol.com

July 2000:

About ten weeks ago I had an accident, involving a mountain bike. An x-ray showed a large gap between my coccyx and sacrum and I had also displaced my coccyx. Since then I have been in considerable pain, when sitting, getting up, lying on my back, turning in bed and walking (I am short so if I stretch my legs it really hurts). I have not had a good nights sleep since the accident and frankly its a pain in the bum. Having seen a specialist (orthopaedic surgeon) who said I would have to learn to cope with the pain on painkillers for up to 3 years I was obviously heartbroken.

I did not know a lot about my injury until recently when I've visited your web site. What a relief to finally find someone who may tell me the truth. I am a very active person normally but have been reduced to shying away from all activities even swimming. I have also been suffering from lower back pain caused by over compensating the rest of my back. I have tried a ring and wedge but they only increase the sitting for a short length of time, I am on co-proxamol, voltarol and use TENS but they don't really work.

January 2002:

Since my last e-mail nothing much has changed. I still have a lot of pain when sitting, lying flat on my back, walking too fast or far (especially across rough ground or up/down hills), the pain is intolerable when going to sit or stand. All this even after twice undergoing manipulation under general anaesthetic and steroid injections (the last one on 15 November 2001), but only slight improvement then a quick return to normal. I have to give up most of my social life as I like going to eat out, the cinema, theatre and most sports. I have tried swimming but even this can irritate the coccyx.

I have joined the t-bones discussion group and regularly read Jon's web site, this has helped me psychologically due to having some support. I was offered the operation in August 2001 but decided to have another injection instead. I return to hospital on 18 January 2002 and I have decided to have the operation although I am fearful of the risks and that it may not work. I have read some positive feedback but on the whole the odds of success are low.

It looks like I will lose my job, and with Coccydynia how am I going to get a job and somewhere to live? I have no idea what to do or who to turn to, but something will turn up! I hope!!

Anyway if anyone wants to know more or has any advice or just wants to chat please e-mail me at: knutkc@aol.com

Thanks for reading my story and the very best of luck to you all. Happy New Year.

Kelly

Updated 2002-01-27




Coccyx fused and angled upwards

Kim - fashion59@hotmail.com

My name is Kim. I've been experiencing pain in my coccyx for over 5 years now. I'm unsure how my pain came to be, I don't remember ever injuring it. When the pain first showed up 5 years ago it was quite bad when sitting, I had to get up very slowly as it felt like the coccyx was shifting back into place. This went on for sometime, then the pain wasn't too bad for a few years, but in the last month the pain seems to be worse. I can't lay my back or stomach, making it difficult to sleep at night. Sitting on hard or soft seats is painful, I have to keep repositioning myself to get comfortable. Walking up stairs puts a strain on it, and sometimes bending over or turning my torso slightly pulls at it, and I let out a little yelp!

I had an x-ray done in 1998, it showed that the coccyx was fused and it angled upward. I recently went for new x-rays, and do not know the results of them yet. My doctor is sending me to an orthopedic surgeon for possibility of surgery.

I will keep you posted, on any new prognosis.

Updated  2002-07-21




No injury, but very painful going from sitting to standing

Kim

Thank God I found this site. I was honestly starting to think this is all in my head.

I started experiencing tailbone pain a few weeks ago . . . don't know of an exact date. No pain while sitting and standing but going from sit position to stand position takes some effort. The only other time I have felt pain similar to this was from a car accident in 1989. It was very painful to go from sit position to stand position due to a bruised tail bone. It lasted a few weeks but I have had no effects from it since. Then recently I started experiencing the same exact symptoms. I do have a job where I sit a long time but I try to get up periodically to stretch the area. It seems that the longer I sit, the more it hurts to get up (also hurts to push on it with my finger). I try to sit with my back arched and my butt in an outward position. It seems to lessen the pain when I get up. Then too, if you sit like that too much, you can get lower back pain or you legs could lose circulation!! Some days it's just a no-win situation.

Don't think I am ready for surgery. Gonna give it a little more time. I think I will at least have an x-ray just to make sure there isn't anything foreign growing there. Thanks so much to all of you that have posted your story. Very Informative!! I now know I am not crazy . . . just have a permanent pain in the a**.

Good luck to all of you who are receiving extensive treatments.

Kim

Updated 2002-08-25




Neurontin and Sarapin relieved pain

Bob Knetl - knetl@comcast.net or bob2k@comcast.net

Original posting,  2002-01-01:

Jon- Great resource and I am so glad I found it and you maintain it. It has given me some sense of hope in my times of despair.

I have been suffering from coccydynia for about 6 months. Up until only a few weeks ago have I found no control of the discomfort and pain and I hope my solution, which I hope will be a long-term one, can provide some hope to the rest of you.

I have used a practitioner in the Washington DC area who has helped me previously with tendonitis and rotator cuff problems though acupuncture. He is an osteopath named Dr Gary Kaplan, and his practice, The Kaplan Clinic in Arlington, VA, specializes in pain management as well as family practice. While an osteopath, he also specializes and combines acupuncture and holistic medicine in his treatment. I have no idea how I came down with coccydynia, but I must say it has become debilitating - beyond anything I have ever experienced. I am a 52-year old male engineer, otherwise in very good health. I first noticed the problem during frequent flights from DC to San Diego and presumed at the time, the problem was caused by a metal bar set in the back of the Airbus seats that United Airlines flies. I'm not sure if that is the case but, the pain grew more and more intense and I ended up at the Kaplan's clinic.

Dr Kaplan indicated that he had treated other coccydynia cases some with great success in some and less in others. He had about an 80% success rate with treating coccydynia. The other 20% were treated with pain medication. He indicated the treatment had to be aggressive as it was a difficult problem to treat. I focused on the potential positive cases hoping to ignore the possibility that I could not be successfully treated. Over the first few months I came to really believing that I was doomed to live with the pain and a donut pillow.

The course of treatment was fairly standard at first. Initially he tried manual stimulation of the ligament around the coccyx combining this with acupuncture/electrical stimulation of the needles. Then I received 3 injections of a corticosteroid over the course of three weeks with an additional appointment each week which focused on manual stimulation of the coccyx combined with acupuncture. I had some relief, but the pain eventually came back.

I had an MRI after the initial corticosteroid injections and it showed a bulged L3 or L4 disc (I cannot remember which one). Dr Kaplan, my osteopath, said that he was not sure if that was specifically the problem as about 15-20% of the population if MRI'd could have a disc problem and nor suffer any pain. He did say in his treatment of coccydynia most patients have had a disc problem (he injected mine with a corticosteroid, but it provided no relief), but treating just the disk does not help the coccydynia. He said that they are unsure of the cause and effect, but there appears to be some link.

He then tried a tri-cyclic antidepressants. I cannot recall the name of the first one, but it did not work for me after almost 2 1/2 months on it (he improvement might take as long as 3 months). He also injected me once again with corticosteroid one time after I experienced discomfort (a few months after my last injection of a corticosteroid) but it had no impact on the pain. He then took me off the original anti-depressant and put me on another, called Effexor ultimately at a dosage of 150mg per day after one week. I took this and had twice weekly acupuncture treatments with/ electrical stimulation of the needles and it seemed to be working for a few weeks. Then I went on a another trip and the pain came back with a vengeance - level 7/8.

At this point he added Neurontin (Gabapenin), building my dosage up to 900mg/day after 6 days. He combined this with shots of Sarpin (see http://www.healthandage.com/html/res/pdr/html/35300600.htm), a sterile aqueous solution of soluble salts of the Pitcher Plant. He indicated that the Sarapin worked much like a corticosteroid, however it could be used repeatedly (up to 15 injections) as it did not accumulate in any organs like a corticosteroid.

Within two days of being on the Neutontin (after one injection of Sarapin) my pain diminished to almost nothing. He indicated that this was not unusual especially for Neutontin. (My cousin who is a nurse indicated the drug, an anti-seizure medication, is used on burn victims to help block pain.) I've been at this level for three week and have received injections of Sarapin each week. This week the pain (really more discomfort, as it is so slight) has increased at times, but no where near the level that it had been. The reactions I have had for the combination of drugs is dizziness when I get up or look up quickly, as well as constipation (fiber laxative pills work well) and ejaculatory problems - all of which have diminished over time. With the Neurontin I have suffered some short term memory loss, more of an irritation to my wife than to anyone else.

My understanding is that pain normally acts in a negative feedback loop to attack pain. With Coccydynia the feedback loop is positive and continues to grow unabated. I guess the idea is to find a solution to break the positive cycle of pain and then take the drugs/treatment for a extended period to remain pain-free to allow the body to heal and "forget" the pain cycle. As an engineer this seemed logical. Also, since I am not a physicist I do not care why something works, only that it can (an engineer's attempt at humor Jon).

I offer my experience (so far) as hope to all who read use your site. At one point my pain was so bad I asked about a coccygectomy. Dr Kaplan said we were no where near considering doing that (he's not a surgeon, but an osteopath and this seems understandable) and indicated that removal of the coccyx had the other side effects that one would have to live with. He said that sitting hard down on your bottom and essentially your spine without a tailbone would leave someone with a headache that would make a serious migraine seem minor. From the perspective of my pain and my engineering background, I cannot see how the coccyx removal could be the total solution when the pain is in the ligaments/nerves surrounding it which I assume would be left in place following removal. Of course, I do not rule anything out from such an insidious aliment.

Bob Knetl

Arlington, VA

Note from Jon Miles:

I had not come across Sarapin before, so I looked it up on the internet. It is a substance which is injected to cure chronic pain, sometimes as part of prolotherapy treatment, and sometimes as part of myofascial trigger point treatment. It is not understood how Sarapin works.

A prolotherapy site said: We use an alkaline extract of the pitcher plant called Sarapin. The exact mechanism of how Sarapin relieves pain is unknown but is felt to be due to the ammonium sulfate concentrate in the extract of the plant. It is plausible that this ammonium sulfate compound, or some yet unidentifiable biological agent in the pitcher plant, causes a gentle irritation which adds to the proliferant effect of the solution when Sarapin is added.

A trigger point website said: The most effective treatment I have found for chronic, severe myofascial trigger point (MTP) pain syndrome is injection of the trigger points using a combination of local anesthetic, calcium and most importantly an extract of the pitcher plant called Sarapin. The calcium replenishes the muscle cells with calcium which has leaked out predisposing the spasm. The Sarapin has a unique action of desensitizing and deactivating the rapid firing pain fibers, thereby breaking the pain-spasm cycle, and blocking pain impulses to the brain. After injecting several MTPs in a session, patients become relaxed and less anxious.

Update, posted 2002-05-19:

I am currently on 2400 mg of neurontin (800 mg 3 times a day) and my pain level is 1-2 down from 7-8 out of 10. I've been at this level for 2 months. Before that my pain level varied between 1-5. I have not needed a sarapin injection in 2 months and only see my doctor once a month, versus  twice a week at the worst.

I see so many postings on this site for doctors to remove the coccyx. I must say I am still troubled by it:

  1. Based on my doctor's feedback on his success in treating overall (I am sure part of the reason is also because he is NOT a surgeon) and he is quite adamant about coccyx removal as a last resort, which he has not had to recommend to date.
  2. Because of my success over time. Obviously, I am one data point and I understand how debilitating a condition this is. I just have the impression that some of the writers have jumped to this decision either because if they see a surgeon, operations are what they do when progress is not evident. Or, due to poor medical advice from inexperience with the condition, which hopefully your site alleviate by sharing experience & options.

For those seeking non-surgical option contact Dr Gary Kaplan of Arlington, VA, a pain management specialist who is also an osteopath. He can be reached at 703-532-4892. I am sure he could refer those out of the area to another practitioner.

Update 2 - 2002-09-22:

I too echo Judy Isaacson's posting about yoga. It has really helped relax me and stretched the area around the pelvic floor. I have been doing it for 2 months and I notice a marked improvement. Wish I would have tried it sooner.

Also, I would like to give you a non-laxative home remedy given to me by my doctor which helped alleviate constipation I experienced caused by the 2400 mg/day neurontin I am taking. The SRI's had a similar effect on me. It can be used along with stool softeners without medical issues inherent with laxatives.

Viola - regularity




Tailbone removed November 5th

Kristen Beinlich - luvjoshua1-9@msn.com

My name is Kristen Beinlich and I would love to help anyone dealing with coccyx pain. I dealt with coccyx pain for over 3 years. My pain came on about 3 months after the death of my sister. A lot of doctors told me my pain was psychosomatic and had me going to psychiatrists for anti-depressants and psychotherapy. I also had bio-feedback, physical therapy, 2 epidurals and 1 nerve block with no relief from anything. Stress seemed to make my pain worse. I was very determined to find the cause of my pain and ended up back in my orthopedic's office several times throughout the years. My orthopedic surgeon, Dr. Alexander Francini, [on the List of Doctors and Specialists in the USA] was very supportive and patient with me in helping me to find the cause/cure for my pain. And didn't give up on me. He finally recommended a wonderful physical therapist and together with her and Dr. Francini's help, we finally determined that I had an unstable tailbone.

Robin is an internal physical therapist [Robin Christenson, on the List of Doctors and Specialists in the USA]. She has helped many people with coccyx pain recover and her prices were pretty reasonable. There are not many like her out in the field. She was the one that discovered my coccyx was very unstable and wiggled all around. I finally went back to my orthopedic surgeon and he agreed to let me go forward with seeing a spine specialist for a surgery to get my tailbone removed.

All I can say is my surgeon was the BEST!!! He was local and even inside my Health Network with Blue Cross California Care. When they did the surgery and removed my tailbone, he discovered the first vertebra that connected to the joint that connects to the sacrum was cracked and was causing my coccyx to wiggle around like a fish! 3 years of pain!

I would love to recommend my doctor for anyone planning on having coccyx surgery. It has only been 5 weeks. I am in minimal pain. I am sitting, walking, exercising, driving and back to work. I will probably have surgical pain for 3 to 6 months, but like I said, it is nothing like before. If your MRIs or X-rays are coming up negative and they say there is nothing left they can do for you, don't give up. Keep fighting. Coccyx pain is real and there is a REASON for it. It your tailbone is, in fact, the root of the problem, tailbone removal is a terrific option. Do not let ignorance scare you away and feel you have to live in pain forever.

Kristen Beinlich

Updated 2002-12-15




Surgery provided some relief, but still have pain

Kristi

I broke my tailbone in May of 2001. I passed out in my bathroom at 3:30 am one Wednesday morning. I had my tailbone removed in October 2001 and received some relief. I do not regret having the surgery, but I am still in pain. I went to the doctor yesterday, a new doctor for me, and was basically told that there was not much he could do. He gave me a prescription for Vioxx and sent me on my way.

I feel like I was basically told - Sorry, You are just going to have to live with it. - I refuse to do that. The pain is too great to "just live with it". It affects every aspect of my life. Does anyone out there have any words of wisdom?

-Kristi

Updated 2002-07-28




I have not sat down for the past year

Laurie Teplitski - lauriekailee@shaw.ca

I am a 29 year old female and have been suffering for a while. I broke my tailbone in November of 2000 - playing ringette I fell flat on my butt. I waited the 3 months I was supposed to, then in February 2001, had my feet kicked out from under me again and re-broke the area.

I had a cortisone shot in April, at the beginning of August and end of August (all in the year 2001). I have not sat down since the end of July 2001.

I had my tailbone removed on April 24, 2002, and I am no better now than before. I am actually a little bit worse. The surgeon says he doesn't expect it to get any better as it should have by now. [Note from Jon Miles - the surgeon is wrong, most people get improvement for a year after surgery, sometimes longer.]

My family Doctor actually told me that he thought it was in my head - that I was scared to sit now because I haven't for so long. I cry myself to sleep almost every night. I can't work because of it, as I work at a desk job. I have no social life and can't even drive my car because I can't sit long enough to do it.

I guess I am kind of at the end of my rope and I am looking for some suggestions. My doctor is looking into having a surgeon cut and cauterize the nerve endings so I don't feel the pain. Any suggestions you can offer would really be great.

Updated 2002-07-28




Sharing is helpful

Leonie - myquick@ozemail.com.au

My name is Leonie and I too am suffering this "unsufferable" condition. I shattered my tailbone on a water slide and my life is hell. The strange thing about this injury is the amount of people that tell you they are sympathetic to my plight because at some time in their lives they have had some sort of damage to their tailbone.

I find the hardest thing for me to cope with is the fact that I cannot lay on my back without getting horrible burning pain in the back of my hips, usually on one side or the other. Regardless of the doctor I go to they all tell me that they can't understand why I would have pain there as I should be most comfortable when lying down because there is no pressure on my tailbone. I find this is so insulting I now don't know if I am imagining this or just going crazy. I do know that I haven't slept in a bed for over two years and not only is my life hell but my marriage and family are on the rocks, I am at the point of total depression, permanently and need to find answers.

This may be posted with my details as I have nothing to lose, and if there is anybody else that feels like I do I would like to know that we can share and help each other.

Updated 2002-03-10




Coccyx woes in Aviano, Italy

Les

Original posting, 2002-07-21:

My name is Les and I'm a 34-year old male living in Aviano, Italy. I have the privilege of working as a United States Air Force Air Weapons Controller and am extremely proud to be part of the greatest Air Force on the planet!

My story begins with me developing testicular cancer (Seminoma) in August 2000 and having surgery in Germany to remove the cancerous testicle. In September 2000, I began radiation therapy as a precautionary measure. After the radiation, I began exercising vigorously to get back in shape. About 3 weeks into the exercise program, I injured my lower back on a cross-trainer machine and had to stop due to the pain. My flight surgeon prescribed pain killers and physical therapy and over the next 8 months, my lower back pain became tolerable. However, I began to notice a "very low" mid-line pain around the coccyx area. I saw a orthopedic surgeon a few weeks later and through an x-ray, he discovered that I have a fractured coccyx (the last 3 vertebrae). My coccyx is situated 90 degrees from my sacrum and points "backwards" and hurts like the dickens when I sit down. Jon, your own testimony reminds me of my situation. :)

My doctors referred me to a neurologist and spine surgeon in Udine, Italy for a surgical evaluation. Once there, she said the procedure was beyond her expertise and she knew of no doctor in Europe who was capable of performing the surgery that I need. So in November 2001, my doctors referred me to the orthopedic clinic at Walter Reed Army Medical Center in Washington D.C. The doctor there basically "blew-me-off" (..."I don't perform surgery on first-time patients...if you still have the pain in 6 months...come back and see me and I'll think about performing the surgery.")...Army surgeons...what a knucklehead!

I returned to Italy and in January of this year was referred to Texas and Wilford Hall Medical Center. There the orthopedic surgeon did all his homework (MRI, bone scan, blood work, etc.) and found no fracture but said that 25% of people are born with a coccyx such as mine. He couldn't explain why my coccyx all of sudden started giving me problems. But he did order a steroid shot and Jon...it worked like "magic"! No more pain...that is until late April of this year. My doctor now has me seeing a "pain clinic" doctor and I have received 4 out of 6 scheduled steroid injections. The injections are not working and the pain is worse than ever. I am taking Vicodin at night for the pain but must suffer through the day at work. I am hoping to see if the Air Force will pay for me to be seen by Dr. Paolo Marchettini in Milan, Italy. He's one of the doctors you listed. Hopefully, he can help!

Update, 2003-01-05:

After much prayer and homework, I decided not to see the spinal cord "stimulator" doctor in Milan and instead sought out Doctor Michael Wright (whom I found on this website) at the Oklahoma Sports Science and Orthopedics (OSSO) clinic in Oklahoma City, Oklahoma (OKC) for surgical removal of my tailbone. Let me say upfront - this surgery is a "PAIN-IN-THE-BUTT" . . . literally! Do not take it lightly. Do your homework . . . then if NO other option(s) exists, proceed. BUT you must, have a good after-care "plan" planned out ahead of time. You must have family or friends located nearby to help you.

I departed Italy in early August and on 15 Aug, met with Doc Wright and his physician assistant (PA) Mark Denney. After a quick exam and x-rays, he felt I was a good candidate for the surgery and scheduled me for the O.R. the following Monday. My family flew in from Italy and MS to be there (but only for 10 days and then my wife had to return to Italy) for the surgery.

The surgery was performed in a private 9-room facility partially owned by Doc Wright approximately 8 miles from his clinic office. Doc Wright made a 4" incision very near the cleft of my bottom on the right side (not in the middle as I had heard from others), removed the tailbone, and sewed me up with about 20 stitches. This was a mistake (which I've heard from 3 other surgeons since) and I indeed paid for it and am STILL paying for it as I write this e-mail. A wound of this caliber CAN NOT be simply stitched up and left to mend or heal. It must be "PACKED" with gauze (two months in my case) and kept very clean at ALL times. This is the ONLY way to ensure the incision/wound heals from the "inside-out" and NOT "outside-in". Let me clear something up. I DO think Doc Wright is a very capable surgeon. He and his staff were always totally professional (well . . . Doc Wright could use some bedside manners) AND I WOULD go back to see him/them AGAIN if I lived in OKC. HOWEVER, post-wound care is PARAMOUNT! This may mean you are on your stomach for two weeks or more without being able to move. IF YOU TAKE AWAY anything from this story . . . take away this . . . PROPER POST-WOUND/INCISION CARE IS VITAL!

After 5 days as an in-patient I was released and stayed in a local hotel for the next 20 days. My wife was with me for 5 of those days and then I was on my own. THIS IS NOT THE IDEAL situation! I had to do everything myself, including meals and travelling back and forth to OSSO clinic to see Doc Wright. 21 days after the surgery, PA Denney removed the stitches and the wound/incision "opened up" at the very top. Mark told me that in time it would heal and after an additional visit, Doc Wright released me to travel to MS and recuperate at my folks place. Once on the airplane, the wound came "open" some more and once in MS I had to be rushed to the ER for additional stitches (Again . . . a mistake!). I didn't find this out until my return to Aviano.

I stayed in MS 18 days and then returned to Aviano, Italy. Once here, I saw my primary care physician and he referred me to a visiting general surgeon (Doc Valerie Leis) from Keesler AFB, Biloxi, MS. She took out the stitches on my second visit with her and when I asked, "How deep is it?", she told me she could see my spine! I just about fell off the table! Mind you this was 55 days since the operation and I hadn't healed at ALL! She ordered an MRI to check for infection and the results were negative. She then left for MS for a week and started my wife on a plan of packing the wound 3-times a day. Two days later, I woke-up with severe pain in the incision area and generally in my right buttock. The pain grew more intense as the day progressed and at 2300 that night, the abscess which had been forming in me ruptured! Blood was everywhere (I mean lots of blood) and I couldn't stop it from bleeding. I've cleaned deer and pigs where there wasn't that much blood. It scared my wife and me to death (we thought an artery ruptured)! Of course, the local USAF hospital doesn't have an after hours ER, so I had to call the Italians! If you've never experienced Italian medicine . . . DON'T!

Post ER and ICU in the Italian hospital, I was transferred to a USAF in-patient unit (rented from the Italians) and the wound became infected and I was hospitalized for 8 days. Upon Doc Leis' return, she took me to the OR, irrigated the wound, and started me again "packing" the wound 3-times a day (I CAN NOT again emphasize to you the importance of this). From that point on (Oct 18th or so to present - a total of 79 days), the wound has totally healed over. This is NOT to say that I am pain-free . . . I AM NOT! I am having to stand even as I write this e-mail! BUT my quality of life has improved steadily since Doc Leis (who by the way is an ANGEL in disguise - she took great care of me) took me to the OR.

I CAN however sit for short periods of time in a soft chair. Believe it or not, hard chairs are more comfortable than soft!

LONG story short - I THINK I'm happy I had the surgery and in time, hope to be pain free. But for the present, that remains to be seen. Okay - Lessons Learned:

  1. Do your homework . . . if no other options exist (steroid injections, etc.) find a reputable surgeon.
  2. If you decide to have the surgery, ensure the surgeon starts you on an after care plan of "PACKING" the wound!!!
  3. Don't sit on your incision/wound or bottom for at least 4 months!
  4. YOU MUST have family or friends in the area to help you recuperate!!!

Again, Jon, I thank you for your service in helping others. Hopefully, others will learn from our experiences and not have to "re-create the wheel again" like some of us have.

Have a great 2003! God bless you all!




Still waiting and getting frustrated

Lesley Fulton - bnlfulton@sympatico.ca

Original posting 2002-02-03:

I am a 27-year-old mother of two boys ages 3 1/2 years and 16 months. I am currently experiencing coccydynia, but it seems to much more of a mystery as to how it happened.

My pain started a few months after my second son was born. I had a natural birth and experienced no problems during labour and delivery. I discovered a bump at my tailbone while in the bathtub in March 2001. I was sent for x-rays, CT scan, x-ray with a marker, steroid injection, surgeon and finally phyiotherapy. I am currently getting ultrasound in the area, which is an annoyance and is not working.

My last steroid injection, the surgeon wanted to 'try something new' and hit the bone. I thought I was going to fly off the table. We have finally found out that my tailbone is pointing inward at a 90 degree angle. The bump that I am feeling is the joint. Everyone said that there must have been a great deal of trauma in the area. When I questioned the possibility of the cause being childbirth, everyone except for my physiotherapist thought I was crazy. My therapist said jokingly that maybe I should have another baby and see if that puts it back. That is definitely not an option!! I see my surgeon on Feb 6 and I know that his next recommendation will be surgery.

I absolutely love this website and enjoy reading everyone's personal experiences. I am extremely nervous and unsure about surgery, but am also to the point that I can no longer take the pain and need something done. I do not work, and am not sure about how the kids will take me being out of commission for a while.

I would love to hear any advice anyone has for me.

Lesley Fulton

Update 2002-03-17:

Here I sit, very frustrated and do not know what to do next. I had an appointment with my general surgeon and he asked me if I wanted him to pursue this for me, and asked how much this affects my everyday activities. Well, to my disappointment, I told him yes I wanted him to find me someone to remove my tailbone and that it affects me and am in pain everyday. He told me that he probably would not be able to find anyone that would remove my tailbone, but he would get back to me. Well, weeks passed, so I finally called his office. The receptionist got back to me by saying that they have faxed off my information to a surgeon, but for "your type of thing" it will be another 8 months to see anyone. She then told me that I "will have to grin and bear with it for a bit longer". I just about jumped through the phone at her.

Now, I am unsure what to do. I will be making an appointment with my doctor to ask her for some pain medication. I am finding that with the nicer weather, I am more active, and in more pain at night. Needless to say, I am getting extremely discouraged with things. I know that I will have to deal with this for at least another year, and am hoping that I can cope.

Thank you everyone who emailed me from my last posting. I find it extremely helpful to hear from people. Some days, it feels like I am the only one dealing with this, but when I hear from people and read other stories, it really helps. Even my 3 year old son is compassionate about my tailbone. He is always asking if it is better and suggests things for me to do to help it go away. I know that he does not totally understand what is going on, but he has my best interest at heart, and I love him for it.

Now that I am really depressed, I will thank all of you for your support and wonderful stories. I am looking forward to hearing many more of your stories and success. I hope to update sooner than 8 months from now.

Lesley Fulton

Update, 2002-12-01:

I know that I have not posted in a while, but I have been waiting for my appointment with a surgeon. Well, last Tuesday I went to see my surgeon, and they finally determined that, yes it is my tailbone causing the pain. I am glad to see that someone has finally figured that out. He did an internal examination to make sure that my tailbone, which is at a 90 degree angle pointing inward, was not protruding any important areas. Once this was determined, he agreed to do the surgery. He has done about 3-4 in a year and feels that once my coccyx is removed, that I will be more comfortable. Now the only waiting left is for them to call me with a date for the surgery.

I am very nervous and have a lot of preparation prior to surgery with the kids. I have enjoyed reading everyone's advice and stories...it really helps being emotionally and mentally prepared for surgery.

I will update you with the results of my surgery.

Lesley Fulton




Surgery imminent

Lisa - J9LJJ@aol.com

I fell down a flight of stairs at work in August and was diagnosed with a broken tail. The painkillers didn't touch it so I was sent to physio. Some times it made me feel better for a couple of days other times it was hard to know quite what to do with myself. Finally I was given an MRI scan. 45 minutes laying on my back and trying to stay still must have been the most excruciating experience of my life.

My tail bone is described as 'grossly distorted', the pictures were something else! My Doc had me in to try the manipulation and cortisone injection under general anaesthetic. I was fine for about a week then the pain came back. He wanted to try again but I persuaded him to book me in to remove it. I was due to go in on 21 January but he had a close bereavement and took a couple of weeks off. He should have gone back to work today and I'm hoping for a phone call tomorrow to give me a new date (hopefully within the next two weeks). I'll let you know how things turn out.

Meanwhile I'm working part days (I'm in accounts so I should be sat all day!) I do what I can and head for home, bed and a hot water bottle! (I find the h/bottle works for me). The boss has been really good but we'd both like to have closure on this.

Updated 2002-02-03




Doctor thinks I'm hallucinating

Lisa - LISA615135@aol.com

Hello my name is Lisa, and I reside in Massachusetts.

On November 11, 2001 I fell down the stairs at work and I was diagnosed to have fractured my coccyx. It has been a terrible experience for me - sitting is out of the question, walking is uncomfortable, and forget wearing my tight jeans. It's all sweats and spandex for me.

I need help. I was getting workers compensation. When I went to see the insurer's chiropractor, he concluded that little was wrong with me, and that I can return back to work.

My job was as a caretaker for the mentally ill and the tasks that I am required to do I can't even do for myself at home.

How can doctors be so smart yet so naive at the same time?

Please help me find someone who knows about coccydynia in the state of Massachusetts

Thanks - desperately seeking Lisa.

Updated 2002-02-03




A long-term solution for a sore tailbone that worked great for me!

Lisa Marie Andres lma2112@ksu.edu

Two summers ago I started having this sore tailbone at work. Once it started, it hurt constantly--when I woke up, when I walked, when I sat, pretty much all the time. I went to a doctor and they had no answer for me.

I wanted to try anything, including removal of my tailbone! So I called a family friend who is a chiropractor. He x-rayed my spine from the side and found that my tailbone kind of had the wrong curve to it. I don't know if it is something I was born with or something that developed as the result of a fall or something. He called it coccyxalgia or something like that. He applied pressure to my tailbone a few times. It was slightly sore but then immediately started feeling better. He told me that I would have to come back a few times a year for the rest of my life. Well, I don't know what happened, but I only went back two more times.

Now I don't hardly think about the pain I had any more because it is completely gone. It only came back once because I fell backwards this summer and hit my tailbone directly on the corner of something. I went back to him once more and it has been gone for months.

Please do not have your coccyx removed! Please consult one or two good chiropractors!

Lisa

Updated 2002-03-10




12 year old with pain

Lloyd

My daughter fell while dancing about 1.5 years ago and has been living with the coccyx pain ever since. Apparently she had fractured her tail bone. She now takes 9 advils a day and carries the Tush Cush wherever she goes. Unfortunately the pain seems to only be getting worse. She finds herself standing in class most of the time and even that doesn't seem to help anymore.

Her doctor is now recommending cortisone shots with surgery the possible if that doesn't work. I hear cortisone shots can be quite painful. Do cortisone shots provide enough relief to make it worth it?

Should we consider surgery or is this too risky, particularly to a 12 year old girl?

Anyone know of any good doctors in the Seattle area for second opinion?

Thank you,

Lloyd

Updated 2002-03-31




Just had surgery

Lori - whocares@rogers.com

Original message, posted 2001-10-20:

Hi there gang:

I just had surgery on my tailbone on Sept 25, 2001 at 12:00 noon. It took 2 hours in the operating room, and then off to recovery. I spent 3 days in the hospital and then I was off to my home, 1 hour away. I layed in the back of our van until I got home. It was done by Dr. Lithwick (see list of doctors).

I have been on painkillers and at this point I am not on any pain meds except at night. I had spent a year of pain before the surgery as I had fallen down 8 steps - OUCH!!!

First update, posted 2001-11-11:

Hi Gang: Just a little update.

I am doing much better. I have no pain when I am up and around unless I have sat too long. I can sit for about 15 minutes and then I have to move. I would recommend this to anyone. I am so happy I had it done. I am still healing and have a few open areas. I am so glad to feel normal again. I am here if anyone needs support. Keep your head up or bums up lol. Thinking of you all who have suffered like me.

Take care Lori

Second update, posted 2002-02-03:

Hi Everyone: I had my surgery 4 months ago, and am I ever glad that I did. It has been 4 months and I feel like a new person. My incision has healed all up and I have a little pain, or maybe not a pain but a discomfort, when I sit to long. If I use my pillow I can sit much longer. It still does not stop me, not like it used to.

I have a life again. If you can believe it, "I WENT TUBBING" with a big hill and lots of bumps, I had no problem and no pain. My children get a big laugh and like to tell everyone that I can flop my BUTT on my chair without any pain.

I hope this finds others getting the progress out of surgery that they where hoping for. I wish you all the best. Feel free to contact me. Lori

Third update, posted 2002-03-23:

Hi Jon: You saved my life having this home page for all of us to look at, and seeing others experiences.

Just a little update: I am doing wonderful, I no longer have any pain. It has just about has been six months. One of our group contacted me and is going to my surgeon here in Canada and will be having surgery in the next month.

Just think Jon how many people you have helped. I enjoy coming back to see if there is anyone that I can help that lives near me. Thanks for everything.

Fourth update, posted 2002-07-07:

I am doing wonderful, no pain , no after effects from the surgery.

Today I was out shoveling and doing my rock garden over with my hubby and my 3 children. I do everything, well almost everything, I have not been brave enought to try to do a sit up yet. I have thought about it, but I want to make sure that I am well healed before I try it, I sure do not want to stir anything up.

I am so glad that it has turned out the way it did. I am hoping that it never comes back, but it is always on my mind "what if it does".

But for now I am doing great. I hope you all a better or pain free day sometime soon.

Your friend Lori

Fifth update, posted 2004-08-22:

It will be three years this September that I had my surgery. I just wanted everyone to know that I am doing wonderful. I return to your web page to see if I can be of any help to any one else. I enjoy hearing others story whether they are good or bad. I have had no set back and hope that I never have to face them. I enjoy life like I use to. Nothing stops me now that I do not have any pain any more.

I think of all those who suffer like I use too. My heart is there for everyone. Thanks Jon for being a big part of our lives.




Coccygectomy

Lorraine - LASTRICKLI@aol.com

Hello Jon and everyone else.

I had my coccyx removed on Sept. 25th after two years of trying everything. So far, I am doing very well and have had far less a bad experience then I had anticipated. If anyone should care for updates or any information regarding details of my surgery, please feel free to contact me and ask your questions.

Update 1:

Right now I am 3 weeks post op. I have been driving my car, going shopping, etc., for the last 2 weeks. I sit fine at my computer leaning somewhat forward. At the dinner table I use my pillow but am still uncomfortable. My couch is the kind of leather you sink into and big (I am short) and I cannot sit unless I put my feet up to the side. I take Advil during the day and pain meds at night. I have been told that with any kind of spinal surgery, it takes a good year for things to settle down.

In my case, the pain that resulted in this surgery, favored the right side and was present 24/7. I can say now that THAT pain is gone as I would recognize it if I were unconscious. I have general pain in the coccyx area that I am hoping is just surgical pain.

Prior to the surgery, I took Advil every 2 hours, now I might take it once during the day. I still cannot lay on my back for more than a minute or so. I do still have the stitches, though, and they are like 2 inch spikes everywhere going in all directions. Once they are gone, I expect things will improve. In general, I am feeling very well. I have been stiff but I credit that to lack of exercise as I used to work out 3 times a week. My only other complaint would be that I tire easily. When I do go out and go shopping or run errands, I feel like I ran a marathon and that is about all I can do for that day. I will see my doctor on the 17th and will try to update some more after that.

Thinking of you all, Lorraine

Update 2:

Hello everyone,

I went to the doctor today jumping with joy at that thought of getting my dreaded stitches removed but it did not happen. The doctor told me he would remove them in three more weeks. He went on to explain that three weeks was a date to "shoot for" but it was not for everyone. He told me it was nothing I did wrong but that I simply was not ready to have them removed. I am not happy about this but so be it.

To be continued, Lorraine

Update 3:

Hi Jon and everyone else!

I finally got my stitches removed on Nov. 7th! Wow, that was a long time. Since the skin had had six weeks to heal around the sutures, it hurt a good bit getting them out. Once they were gone, I felt like a new person. My progression has been strange to say the least. Every time I am "sure" of something, it changes. My biggest fear was that the "pain" that led me down the surgical path would return but from day one, it did not. Suddenly I realized that the "pain" always came when I was sitting or lying on my back and with the stitches in, I could do neither so how could I really tell? Well, the stitches came out and I held by breath. No pain. I went about one week and was just about to update when it returned and made me feel physically ill. I was so depressed but then it disappeared as fast as it came. It now comes and goes more like a twinge or a distant memory. If it never gets better than this, I will be happy because I can live with an occasional twinge.

I am completely off pain medicine but keep some just in case. I have pain that is new to me but I still believe it is post surgical and hope I haven't just traded pains. Sometimes during the night I get something similar to an attack of stabbing type pain while lying on my side but they it disappears.

So, in summary, today I am glad I had the surgery and have promised myself to be patient as I lived with the pain for over two years. I do everything I used to except work out. It involves too much floor sitting. I am going to seek out a heated pool to swim in. I will update again in a couple of weeks.

Thinking of you all.

Lorraine

Update 4, 2001-12-19:

Hello Jon, Hello All,

I have not written in a while as I have been depressed. I am now over 2 months post surgery and my pain has returned 100%. I do not feel the OP was unsuccessful but rather that the coccyx was not the problem. I stated earlier that my pain always favored the right side and hurt while sitting or laying on my back. I didn't not have much trouble going from the sitting to standing position. All along, I though I had a nerve problem but no one paid much attention to that theory. I had an impar bloce prior to the surgery to ease my own mind. However, they gave me something for pain following the block to ease it's pain. Thus the results were confusing. I am convinced now that although I had whacked my coccyx pretty hard, it was not the perpetrator. My pain is about an inch to the right where the split begins and has never moved or changed. I will be going back to my Ortho next week to give him the good news. If he says, "Well, I don't know what else to do." I may remove something of his. Any thoughts would be greatly appreciated. I haven't answered personal mail from you guys lately because I was in partial shock.

Sincerely, Lorraine

Update 5, 2002-02-03:

Jon, I just got a note from someone on your site that also had the op and was wondering how I was doing. I am happy to say that I am about 80% better than when I last updated! Shortly after ranting and raving, I began seeing a massage therapist. I am not sure whether my relief is a direct result of this therapy of if my problem was stubborn pain that refused to let go following my surgery. At this point, I don't care, I'll take it! I am sorry I didn't update sooner. I promised myself that I would be sure to send the good as well as the bad.

Hope all is well with you. Thinking of you all,

Lorraine

Updated 2002-02-03




Painful bump next to coccyx

Lourdes - sshyest@yahoo.com

Right now I am dying in pain!!!

I've had this problem since I was 12 and I'm now 26. I injured my tailbone by riding in the back of a pick up truck on the bare floor for a 2 hour trip. Since then I noticed that it would hurt so bad but I never got help for it. It hurt constant for about 4 years until it suddenly stopped.

But now, about 2 years ago the pain came back, but there's a bump on the right side of it and the pain is unbelievable!! The good thing is that it will go away after a week or so and then it appears again 2 or 3 months later. I have no idea what this bump that comes and goes ought to be. I did tell my neurosurgeon of this and he ordered some x-rays and nothing came up so he said I was fine. I don't know what to do!!!

Any suggestions?? PLEASE.......

Updated 2002-01-20




Tumor behind tailbone

Lucinda - tlct_hauser@msn.com

I had an odd tailbone since birth, broke it a couple times while growing up and probably worsened it during childbirth (especially the first). Now the shape/direction of the bone is problematic, but the doctor just identified a tumor the size of a baseball. I need info before going to the specialist. I'm being told not to worry. I don't buy that, especially when I look into everyone's eyes (radiologist, doctor, nurse, etc.). Anyone know of anything related to a tumor in the area?

Luce

Updated 2002-10-13




Severe coccyx pain

Madams - madams207@comcast.net

Original posting, 2002-09-01:

Hell-o,

I'm writing to share my story with others who are going through this painful experience, or who may go through it in the future!

I started having terrible pains back around the end of April this year. I did not fall or anything I just started hurting. I had been to the doctor the day before for a cold and pain in my shoulder. He put me on Vioxx for arthritis. It really helped me the next day I started having stabbing pains in the tail bone. I kept on going and hoping that it would go away and a week later it was still there and worse.

I went back to my doctor, they ran test to no avail then he sent me to the hospital for an MRI which showed them nothing. He proceeded to give me shots which worked for about six hours and then the pain was right back. I went back to him and he told me he was sending me to a bone specialists and they checked, x-rayed, and diagnosed me to have coccyxedema (swelling in the tail bone and also it curves in). He put me on Celebrex which I tried to take but could not tolerate. Thank God for my pharmacist, she told me not to take Vioxx and Celebrex at the same time. I'm presently taking nothing, every now and then I take an Equate, something equal to Advil that cost exactly ninety-nine cents (smile), it does better for me than the medicine the doctor prescribed.

I have an appointment this Thursday to see another doctor in the clinic who is more educated in this area. That will determine whether or not I should have surgery and I must say from reading some of the reports on the site, I don't think that surgery is something that I'd be interested in. I must admit though that I already had a made up mind as to not have it, but I'm praying about it. I'm presently on leave until Thursday when I go for my appointment. That will determine whether I go back to work at all.

Oh yeah, I'm a bus driver of right at twenty years or more. I was told by the doctor that, that is what has contributed to my condition. I guess by now you know why I'm on leave, driving has really become a chore for me. Especially the school bus! By the time I get back to the terminal I can hardly remove myself from the chair.

Update 2002-11-10:

Here are some exercises for the coccyx, there may be someone out there who can benefit from these! I was told to do them twice a day. I'm doing real good since the shots in August, (I can feel some of the pain gradually coming back but thank God its not like it was at first). The doctor said surgery was not an option and that he does not like to do them, he stated that maybe he does about one every five years. Stay encouraged!

Madams

William's exercises

Update 2003-08-31:

I am writing again to let you guys know that I had one good year of very little pain, after taking the shots last August. They were classified as short term, and long term shots, they really did work. But the pain has reared its ugly head again I am praying about whether or not to take them again. I am in much pain especially when I sit down and go to get up it is almost breath taking.

I don't think it will be much longer before I have to get something done. My husband has told me he knows I need to go ahead and go, but I'm trying to withstand as long as I possibly can.

Praying for all of you. I will update as I go! I also want to thank you Jon for this blessed web site.

Update 2003-12-21:

I went to the doctor back in October and got a shot, I had to go right back the next week. I was in so much pain I could hardly breathe. Since that I had the shot again and it got worse.

I made up my mind I was not going back anymore, so I prayed and ask God for healing. I also wrote to Richard and Lindsay Roberts, I ask them to stand in faith with me as I believed God for my healing, they did and also sent me healing oil and a prayer cloth which I put in my bed around the area my buttocks would be positioned in, I anointed myself and did not give it another thought. I have been intending to update, but something always comes up but here it is the whole truth.

As I said in the last up-date I was going to believe God for a miracle, well I did and that is just what I got I have been pain free for over a month. One day I was reading about something else on line that was of importance to me, they talked about vitamin B-6 so I tried it. I was trying the B-6 for something else, the strangest thing happened I started moving around without much pain, the next few days I was pain free, yes I said it again, pain free. I don't know if you believe in God or not, but one thing I do know is that He is a miracle worker. I pray healing on all of you, I didn't want to be to quick with my results for fear it was not what I thought, but praise God it was and I am free of all that excruciating pain.

When I read the label on the vitamins I found out that vitamin B-6 is good for the nervous system, and I felt all along that, that is what was maybe part of the cause especially the area that it is in. The big knot that it felt like I was sitting on is gone, gone, gone Praise God! The vitamins cost me $2.05 the shot cost me over a hundred dollars a whop.

God bless you all is my prayer. I wish you the best.

P. S. I had also taken (3) predinisone that same week for a problem with my inner ear I had to get off of those things they make me sick. I praise God for my healing! I give Him the glory! I stand in prayer with all of you now in the name of Jesus Christ my Lord, be healed.

I hope that I have helped you in some way! God Bless You all! You may write to me at any time. Blessings!




Estradiol relieves coccyx pain around menstrual period

Margaret Bennett - MargieBennett@earthlink.net

A common problem with low estradiol, the dominant estrogen made by the female ovaries, is lower back and coccyx pain. Estradiol affects the ligaments by keeping them healthy and firm, and helps protect them from oxidative damage. When the estradiol levels dip as they do before the menstrual period, or at perimenopause and menopause, the ligaments become less taut, and no longer hold the hips and pelvis as tightly as they once did. An excess of progesterone relative to estradiol also encourages relation of the pelvic joints. The result for some women is pain in the lower back and or coccydynia. I am one of them, and I know a number of other women who have had the same problem.

The good news is that appropriate estradiol replacement therapy resolves the problem substantially to completely.

When should you suspect that your coccydynia is related to low estradiol levels? If you are premenopausal, does the pain worsen just prior to your period, when estradiol is at its lowest level? Did the pain begin after age 35, when estradiol production typically begins to decline, and worsen through menopause? Did the pain appear about the time your periods became heavier and or more uncomfortable? Did the pain start around the time you developed thyroid disease? (Low thyroid typically causes the ovaries to reduce their estradiol output). These are important clues that your pain may be a sign of insufficient estradiol.

I developed coccydynia after the birth of my first child, which triggered Hashimoto's Thyroiditis, hypothyroidism, and low estradiol levels. I had resigned myself to the pain, as the doctors were not helpful. A few later, I was fortunate enough to come under the care of a wonderful doctor who is expert in hormone therapies. After she corrected my thyroid imbalance, and prescribed supplemental estradiol in the form of patches, I noticed that my coccyx pain had disappeared, as had the aches in my hips. I have sent well over a dozen women with coccyx pain to this same doctor, and every one of them has gotten rid of all or most of their pain thanks to replacement hormones. I strongly suspect this is a very common cause of coccyx pain for women. Unfortunately, most doctors are completely unaware of this, and will pooh pooh this suggestion,. Women have to be firm and demand to try estradiol replacement for a couple of months to see if it is a solution for them. Premenopausal women typically need estradiol levels of 200 or higher on day 20 of their period, and postmenopausal women typically need a level of about a 100 to escape pain. Many premenopausal women find that a high estrogen, low progestin birth control pill to be the solution.

I hope this information helps some women. For further information, I highly recommend "Screaming to Be Heard", by Elizabeth Lee Vliet, M.D, for thorough coverage of hormones and their effects.

Updated 2002-09-15




I've had the op, now let's hope I've lost the pain

Maria,  Mariaduthie@aol.com

I had my operation on the 10th October 2001 after only suffering for two-ish years with a painful coccyx. I fell down the stairs, landing on my son's trainer, pushing the coccyx onto lots of nerves and causing rather a lot of discomfort. After pain 'killers' (that's a joke) and injections and then physio, which made it worse, my consultant said either learn to live with it, take powerful drugs (used for manic depressives) that change the chemical reaction of your brain to pain, or surgery. I opted for surgery.

The day before I had my op, I found this site. I was in two minds to go ahead, but I did.

It's not as bad as I expected. It feels sooo much better now that the stitches are out. I'm still using the cushion to sit at the computer, and getting comfy in the evening is a bit of a nightmare, but I'm hoping that is just due to the op.

I'll let you know. Kind regards Maria

Posted: 2001-10-28

Update:

Well, I'm now a few months after surgery. I have noticed that the pain, although still there, is less severe. Unlike a lot of letters that I've read, I feel no need for painkillers. If I'm sat for a long time, I get a shocking pain when I stand up. After 10 seconds or so, it has gone. I, unlike others find it quite comfortable to sit on hard seats, leaning forward most of the time I must admit.

I have had my recovery hampered by the addition surgery on my left knee. I ruptured my anterior cruciate ligament and so have had to nurse that as well. I've not had a lot of luck lately!!!

Well, just thought I would let you know that it can work. If anyone would like a good surgeon in the south of England, he was:

Mr Nick Boeree, c/o Wessex Nuffield Hospital, Bournemouth Road, Chandlers Ford, Hants

Tel (023) 8026 6377

Updated 2002-01-06




Sixth lumbar vertebra

Marie - MVInce1889@aol.com

Has anyone heard about a sixth lumbar vertebra being the cause of tailbone pain?

My pain is worse when I am standing or bending slightly. It has been years, and MRI's and X rays show nothing. I am so sick of the pain.

Marie

Updated 2002-04-14




Pregnancy and coccyx pain

Marie - dmarie1@comcast.net

Original posting, 2002-05-26:

I have suffered with coccydynia since March of 2000. I have a 3 year old daughter and my husband & I would like to have another. I am terrified of getting pregnant though. I was wondering if anyone that has become pregnant while suffering with coccyx pain can tell me their story. My OB/GYN said that he would not let me have the baby vaginally and would do a c-section. He has also told me that he doesn't know how painful the pregnancy would be for me, but that if I was in severe pain at 36 weeks he would do an ultrasound to see how the baby is doing, if the baby seems fine he would take it early. He seems to want to help make a second pregnancy as comfortable as possible for me, but I'm still afraid.

I was wondering if anyone could tell me how the "9 months" of being pregnant and carrying the extra weight affected your tailbone pain. And also how you felt after having the baby, were you in more pain than before the pregnancy or little to no change?

Update, 2003-04-06:

I wrote awhile back wanting to know if anyone could tell me their experience of being pregnant with tailbone pain and how they did afterwards.

Several ladies did write to me while they were pregnant and said that they did have some pain. I was wondering how the whole pregnancy went and if they were in a severe amount of pain afterwards and if the pain did subside eventually. I would also like to know if you had a c-section or vaginal birth.

I'm still debating on whether or not to have another child (dd is 4 now), but I'm so afraid that I will end up with severe pain again. I have been improving for about 1 year now and do not want to start over!!!!

Any info would be greatly appreciated!!! I would love a new baby, but I'm still so afraid!!!

Thanks for listening!




Tuina massage therapy

Marilyn Dyck - MARILYNDYCK@aol.com

I just wanted to let people know about the awesome massage therapy technique I discovered called Tuina (or Chinese) massage.

Last winter I had a bad fall from my horse and injured my sacroiliac joint/glutes/tailbone - in other words I had a very sore butt! I spent several months going to physio for my sacroiliac joint and was very slowly getting better, but since I had lots of additional aches and pains I decided to use massage therapy as an adjunct to this treatment. For some reason, I decided to try Tuina massage as everything I read about it sounded like it could really work out the adhesions. I must say it worked! After about 7 treatments my sacroiliac joint was all loosened up and pain free. Now the therapist is working on my tailbone and after just 3 treatments it started to feel much better.

Tuina massage is a very deep, penetrating massage and you're bruised and sore after a treatment, but it's worth it! Hope this information can help other people with soft tissue injuries.

Updated 2002-08-04




Unknown cause with bad symptoms, in Canada

Mark - mark_cheryl@hotmail.com

I'm Mark, a 22 (23 Feb 19) year old father of one and another on the way. My first fight with coccyx pain was for about 2 months in college before Christmas break 2 years ago. The pain got progressively worse sitting at college, so I tried a kneeling chair during the Christmas holidays and between that and the different activities not involving sitting all day it faded. By the time I was back in classes I was fine. Then during the last two weeks in school it flared up some again. The summer holidays and less desk time allowed it to heal.

One year ago today I started a new job that was a 45 minute drive each way. At my job I sat for 8 hours, drove home for 45 minutes and sat for another 3 hours at home on my computer. The pain started faintly like at college but kept progressing. After about 6 months of this I had stabbing shooting pain from sitting for any length of time. I couldn't lay on my back, I couldn't lay on my side. Bending over hurt, picking up my son hurt.

I finally went to see a doctor who told me to sit on a pillow, yeah right. I'm 6'3" and 165 lbs, pretty thin. The doctor suggested I should also try and put on some weight to cushion my poor tailbone a little more. If I could ever put on weight I sure as heck would, but even a supercarb and protein and workout lifestyle only got up to 177 lbs and honestly I gained nothing in the rear region because there was too much pain to workout my lower body. My doctor also got me X-Ray'd but nothing came of that, of course. My doctor also put me on 3 Advil a day for the swelling and inflammation. After 2 or 3 weeks of this it did not feel like it was helping and I was terrified of the thought of what that stuff was doing to my liver.

I had to quit working out and quit karate too because I could feel it hurting the area. So since October I haven't really sat down. I thankfully work a job where I can spend my whole day standing. The car ride is brutal but thankfully I carpool and spend the entire trip laying down with the seat all the way back. When I drive myself I'm practically sitting in the back my seat is tipped so far back, I can't wait until I get pulled over for something to hear what the officer will say... I go to the nursery at church with my son so I can lay on the floor because even 30 minutes of a sermon would leave me stiff and grimacing in pain. At family meals I kneel on a cushion to eat. I hoped that staying off my keister for months on end would heal up the situation but apparently not. You can imagine how sore my feet are. 3 months of trying to sit in a "proper" position hoping that would help actually must have done extensive damage. I tried a kneeling chair again a month ago for an hour straight, wow that was a mistake.

Here I am 9 months after the pain started, 6 months of part time off my butt, and almost 3 months of completely staying upright or laying down on my stomach. I get little twinges now and again even from standing still, like using a computer, so I know I'm not healed yet. The psychological part of this problem is probably the worst. I have a hope that it will heal without surgery, but a little twinge here and there for the last three months make that hope fade a bit with even with the smallest bit of pain. I've also been seeing a chiropractor for a month without any noticeable improvement. I'm about to give up on that and am thinking about asking the doctor about cortizone shots. I'd rather not be a drain on the healthcare system and get the surgery if I could get away with it but the dread of having no choice is looming. Its hard not to be able to sit down and hold my son.

If anyone knows a good doctor/surgeon in Canada, British Columbia would be the best, I would love to get their contact information. Also any suggestions for treatment would be appreciated.

Pain in the a-- in Vancouver,

Mark

Updated 2002-02-17




Injections with manipulation

Martin - Martinsbooks@aol.com

Original message 2001-10-28:

After pains that started in July and taking anti-inflammatories, I had injections and manipulation 12 days ago, following x rays and MRI scan (both showed nothing). The pain / discomfort was worse for the first 7 days, which I spent mainly in bed taking painkillers.

The last 3 days things have shown a SLOW improvement - no painkillers and I've been out for a walk this morning. I'm hoping things will improve slowly. Has anybody out there had success with injections etc? I'd love to hear from you.

Regards to you all,

Martin

PS This site has been brilliant as it enabled me to push harder with my GP and get referral to an orthopaedic surgeon. I even beat the waiting list by going in through accident and emergency.

Update 2001-12-30:

Injections didn't work, I'm not a good candidate for surgery. Has anyone had any success with a Chiropractor?????

Update 2002-06-16:

It's been a long time since I looked at your site or emailed you. The diagnosis was finally very acute stress. I started with a chiropractor in January going twice a week, it was hell for two months - the after pain etc. By the middle of February he had me off all medication and at the end of February I started to sit down for the first time in 7 months. I had to walk 5 or 6 times a day.

However by the end of March we seemed to have plateaued so I switched to another chiropractor - a colleague of the one I was using. His hands were stronger for stretching ligaments and muscles - again he put me through hell. By the end of March I could sit normally and drive short distances. I am now seeing the chiropractor once every two weeks, I'm very sore but maintaining the slow progress. No pain or coccyx problems just muscle tightness and soreness (gluteus maximus).

I wish 12 months ago I'd gone to a chiropractor and nipped the problem in the bud as a friend did suggest to me. Instead things got worse while I was undergoing test MRIs injections and so on. I reckon a full recovery is still a few months (6) away, but my exit from teaching and building a new life for myself will I hope help. Most important has been the support from my family.

Many thanks for the emails from various people and Jon.

Kind regards, Martin

Update 2002-07-28:

Hi,

After 12 months my problem has now manifests itself in Piriformis syndrome. Anyone else out there who's had it or successful treatment, I'd love to hear from you.

Martin




Anyone with experience of Prolotherapy?

Martin Sheets - MSheetsDM@aol.com

I hurt my lower back a year ago on a dirt bike. I am leaning toward prolotherapy for ligaments because I think they are causing the pain. My back pops and cracks and feels unstable. I have a bulging L5 S1 disc with no nerve impingement, and numbness sometimes in my foot and lower leg.

Can anybody who has had prolotherapy please write me and tell me your experience?

Thank you

Martin Sheets

Updated 2002-11-24




Coccygectomy solved one problem but created another

Mary in New Zealand

On 11th December 2000 I had a total coccygectomy. Prior to that I was diagnosed as having coccydynia, as a result of a fall on to my bottom in September 1999. I experienced pain on sitting and particularly acute pain when moving from sitting to standing. Dynamic (sitting / standing) x-rays showed a subluxation of the coccyx. A tracing of those x-rays can be seen below along with the radiologists report.

15 months later I am now able to sit without pain in the coccyx area and I no longer experience pain when moving from sitting to standing. However, since approximately 8 weeks after the operation I have been experiencing continuous pain in my buttocks and upper thighs, particularly on the right side, which is aggravated by prolonged sitting and walking. This pain is worse than the coccydynia because I am unable to manage it. I could prevent the coccydynia by not sitting, but this pain is with me all the time. It feels as though the muscles across my buttocks have been pulled too tight. Initially I hoped that it was just my body adjusting to my altered anatomy (being without a coccyx) and that it would gradually settle down and it hasn't.

My physiotherapist believes this new pain is caused by nerve entrapment in scar tissue, but physical treatment (massage, stretching, etc) has provided no relief.

Through the T-bones discussion group I am communicating with another person who has had a very similar experience. I think it's more than coincidence that we are both experiencing almost identical problems after the same operation. I would be most interested to hear from any one else with similar post operative symptoms, so that we can document them and raise awareness of the possibility of this complication.




Had surgery in 1997...still in pain....but holding on to hope....

Mary in Ohio - Mary902168@aol.com

I am a 58 year old Grandma Honey who has had surgery to remove my coccyx in 1997.

I had originally injured my coccyx riding a horse as a teenager. After that I managed to get along by just not leaning back. Then I re-injured it in 1996 and was sent to an orthopedic surgeon who recommended surgery to take the coccyx out. The MRI showed that it was OK, but the surgeons said it must be the coccyx and wanted to take it out. I agreed because I was in such pain sitting. I wish I could say the surgery was worth it but the pain is really worse for me. I hope all those who are considering surgery will really look at this site for someone who has experience with this surgery. I seem to see that the doctors who have experience with the coccyx surgery have the very best results.

I had this little lump on the right side of the coccyx since I was a teenager and had the first injury. But no one seemed to take it seriously. Now I am more assertive, insisting that they look into a diagnosis for this lump. I had a CT scan last week and will see a general surgeon recommended by the Pain Clinic, Dr. Thomas. He asked that I have him look at the lump and read the results of the CT. X-rays have shown nothing.

I cannot seem to take any anti-inflammitories or antidepressants because I get such awful side effects that I cannot function, with migraine headaches and tinnitus (ringing in the ears) that result from taking most medications. The Cleveland Clinic Pain Clinic is suggesting the procedure that kills the nerve with electrical impulses. I can only hope that is effective.

Jon has the best advice in this site for helping to cope. I try to sit as little as possible and save my sitting time for dinner with family and friends, etc. I stand at the computer as long as I can and then I kneel. I bought a van with a level seat to make it easier to drive.

I have seen many doctors for this condition. I have not found the perfect one yet, but I am getting smarter about how to get a little better care along the way.

Hope this helps someone. Thanks to all the folks who share their story on this site. It helps to find many answers for all of us!!

Mary in Ohio

Updated 2002-07-28




Post-Coccygectomy Success Story!!!!!!

Mary-Anne - MIMIAC55@aol.com

Posted 2000-02-05

Jon- I had surgery on February 23, 2000, just 3 short days ago! I am SITTING here now albeit a little uncomfortably, writing to you.

I have such empathy for all the people out there who have yet to find relief from their coccyx pain. I, too, suffered for a long time. However, it had only become intolerable over the past six months. That is when I first decided to see an orthopaedic spine specialist (Sept 1999). I had tried numerous anti-inflammatories with no relief. I ended up on vicodin which did relieve the pain, but I had decided I was not going to take narcotics on a long-term basis. When my doctor first suggested surgery (in early Jan 2000), I was hesitant as I would be about any surgery. When I finally decided to have the procedure which was scheduled for Feb 23, 2000, I began intense research on the subject. I had two months to read anything and everything I could lay my hands on! At any rate, when I discovered your site it was like a God-send! It is very informative! My only suggestion, which you have already begun to address, is to print more success stories. I feel that I am a success story! That is precisely why I'm writing!

I live in New Haven County in Connecticut. I had the surgery at Yale-New Haven Hospital. The doctor did admit it is a rare procedure, but felt confident that it was the solution to my problem. I tend to be a bit of a wimp so my greatest hardship was the pre-op meds/anesthesia and immediate post-op discomforts (urinary catheter, IV and pain pump). I was only in the hospital overnight. I'm not exactly sure how long I will be out of work, but I'm anticipating at least a month as my job involves sitting all day. (I'm a nurse at an HMO).

To those of you who are contemplating surgery, I would first advise you to find a doctor you trust. Then get a second opinion (which I did) and then be confident that this is the right decision for you. I had my parents and co-workers opinions to contend with and I'm 44 years old!! They accessed the internet and read nothing or very little that was encouraging! They were strongly opposed to my decision to have the surgery. But because I felt well-informed and trusted my doctor, I did go through with it.

That is why, Jon, I am most concerned with more positive responses being printed. I know you can only print what is submitted to you, so I am pleading with anyone who does have the procedure and has good success, as I have had so far, to please share your experience as it helps to make the information more balanced therefore making the decision easier one way or the other. If anyone has any additional questions I can be reached at MIMIAC55@aol.com. I hope I've helped at least one person make a decision today.

The surgeon's name is Kenneth Kramer, M.D. He has numerous satellite offices here in Southern Connecticut. I also saw Dr Tushar Patel for my second opinion. He is located at the Yale School of Medicine in New Haven. Both of these doctors are familiar with the procedure, but as you know most doctors have not performed that many actual coccygectomies as it is a rare procedure. Many surgeons are hesitant to perform it at all, so I was very grateful to find one who advised me that it was potentially curative for my particular symptoms! He did say, though, that not all people are candidates for this surgery.

Update, 2000-03-10 - post-coccygectomy success story (2 weeks post-op)

It is now 16 days since I had the surgery. I feel as if I'm recovering amazingly fast. Although I'm still having trouble sitting for extended periods of time, I otherwise feel great! Some days are more difficult than others--but it is only just over two weeks since I had the surgery. I continue to be glad that I made the decision to have my coccyx removed. I do use my pillow with the cut-out for the tailbone when sitting which helps a lot. I hope that anyone else who decides to have the procedure has as good an experience as I have had thus far. I will probably remain out of work for another 3-4 weeks. but we'll see how it goes. My job involves sitting all day, so I do not want to rush it. I'll check-in occasionally to give status reports on my recovery so that others can see that this procedure can work!!

It has just dawned on me, from re-reading your message board and from the e-mails I have received from other surgery patients--that the speed with which I feel I am recovering and the rapid decrease in pain at the site-is directly related to how my wound was closed. That is to say--my doctor used steri-strips to close my incision. Everyone else I've heard from, appears to have gotten stitches!! So, as you and they have probably already figured out- sutures hurt when they are healing. They tend to tug at the skin and tighten as they heal. That does cause additional pain. I don't know if it's because my surgeon is more familiar with the procedure or if maybe those other patients had a more involved surgical excision of their coccyx. But I thought it may be of interest to you all. I guess that could be another question to ask your doctor before surgery.

Update, 2000-04-08 - 6 weeks after surgery

It is now six weeks since I had my coccyx removed. My recovery has continued to be uneventful and, I think, rather quick! I am putting off going back to work for the simple fact that it involves sitting for 8 hours and my tailbone area is still not ready for extended sitting. I can sit for up to 3 hours without much difficulty. The car does cause me more pain just because of the position of the seat so I keep my driving to a minimum. I had no post-op infection. The site was healed in less than 10 days. The internal healing continues, but I remain optimistic. I just wanted to let your other readers who are contemplating surgery see that it can be the solution to their long-term suffering. If anyone wishes to contact me with questions or comments I'm at MIMIAC55@aol.com. Thank-you.

Update, 2002-02-17 - Reply to an email from Shane

Dear Shane,

All I can say is--my pain is 90% less today than it was 2 yrs ago! I remain glad that I had the surgery in spite of the fact there was so little info about it. I can't think of anything for you to ask your MD about. If you trust him/her you should be all set. Good luck.

Fondly- Mary-Anne

Update, 2010-05-23

Hello again!

It has been 10+ years since I had my tailbone removed. It was the best thing I could have ever done for myself. I have NO pain at all anymore. I can sit for hours with not even a twinge of discomfort in that area. It is such a blessing! I've been taking my comfort for granted. However, I was reminded how fortunate I am when I started to receive e-mails from other folks on this site who are still suffering. I would imagine (and hope) that more doctors are familiar with the procedure by now.

All I can say is do your research, find a doctor experienced with doing coccygectomies, trust him/her and GO FOR IT!!!! But keep in mind, not everyone is a candidate for this procedure. There are different types of injuries/defects/anatomic differences and not all will benefit. That is why it is important to educate yourself and trust your doctor. You can always go for a second opinion, too.

If you are unable to have the procedure or don't obtain relief after having it done-look into pain management with a qualified medical professional. There are numerous options out there other than narcotics which cause problems in and of themselves... not the least of which is constipation, which is the last thing you want to deal with when you have tailbone pain!

I wish you all well.

Mary-Anne




Long term pain in coccyx, awaiting surgery

Marcel - m_baillon@hotmail.com

My trouble started five years ago, when I fell down the stairs at home. I spent the next three weeks on my back in bed with terrible pain in my lower back and coccyx area. After getting back on my feet, I was still unable to walk unassisted. Unfortunately I was a care assistant, and had been for the previous ten years, a year after my accident I was "pensioned off " due to ill health (without any pension payments I must add).

Anyway after years of pain killers, steroid injections, anti-inflammatories, physio etc my lower back pain was put down to a slight prolapsed disc and the severe degenerative discs of the lower lumbar. I was told there was nothing that could be done about that, only regular steroid injections which I continue to have. However these do not work on the coccyx area which I find more unbearable than my lower back pain.

I have recently been offered surgery and am awaiting an admission date which could be six months away yet. I have really appreciated this site for the information I have gained about surgery but will admit I am very scared about what is going to happen and would appreciate any first hand experiences to be passed on to me.

Thanks for your time. Hope to hear from you fellow sufferers soon.

Updated 2002-05-12




Frustrated with tail bone pain !!

Melissa Schlee - missy@trmnet.com

Original message posted 2002-01-13:

I am 29 years old and 6 months ago it became very painful to sit down! For no reason, my tail bone started bothering me and I have found no relief to this date. I did not have an accident, I did not fall down hard, nothing. My tail bone doesn't interfere with any other part of my life, except for sitting! Which I do all day long! So it's making my job difficult. It also makes my 45 minute commute into work difficult!

The first time I went to the doctors, they didn't even examine me and just diagnosed me with coccydynia. They said to get a doughnut and try to stay off of it as much as possible and that it would go away, but it would take time.

It has been 6 months now and nothing has helped. I have had X-Rays and they could find nothing, they examined the area and could find no cysts. The doctors seemed more stumped and confused and to this date, I have not felt confident about their diagnosis. I am also starting to feel a tingling sensation in my feet and my joints seem a little stiffer than normal. I'm starting me to think about a pinched nerve!

My next step is to get an MRI done and to also see whether or not a pinched nerve could be the culprit. I am very confused, concerned and frustrated. I can't believe or understand that pain would just appear for no apparent reason and then remain with me with no hope of relief. I just ordered the Coccyx Cushion from Gulf Bay Pharmacy and I'm hoping it'll work better than the doughnut! That contraption is pathetic and makes it feel worse than better!

It does bring comfort to read the other stories posted. I don't feel like I'm going out of my mind! If anyone has suggestions or knows of a good doctor or specialist in the DC Metro Area, I would be most appreciative.

Thank you - Melissa Schlee

Update posted 2002-03-23:

I just wanted to post an update. First of all, I couldn't believe how many responses I got to my initial posting! It's amazing and unfortunate how many people suffer from this pain. I have actually formed a mini-support group and it's comforting knowing I can turn to someone and they can turn to me for support, ideas or just to vent.

Well, here's what I have had done so far.

  1. X-ray of the pelvic area = Normal
  2. CT Scan of the pelvic = Normal
  3. Bone Scan of the pelvic = Normal

I have only been to a Neurologist (after my primary) and he is the one who has initiated these tests. He prescribed Methylprednisolone (didn't do a thing) and now wants me to take Neurontin.

I asked one of my close friends from college (she's a chiropractor) and she was informed by one of her co-workers that the company is being sued right now for marketing Neurontin for pain when it hasn't been tested in clinical trials for that. It's only been tested for epilepsy for patients. So, I'm debating whether or not I want to take it. I'm going to send an email to my Doctor and ask him about this. He may not even know. He also wants to try, if Neurontin doesn't work, an cortisone epidural to the lumbar spine. So, I have some choices to make.

There's a good website you can go on (www.nih.gov) where I have done some research on the tailbone. It's a good site, pretty informative. It's funny, two main exams done (Palpation and Rectal Exam) have not been done on me yet ! No Doctor has performed them or brought them to my attention. It's like you have to go in there fully prepared and ask them what you want to have done to you!!

I'm going to an Osteopath this coming Wednesday and hopefully will find something there. I'm going to ask for an adjustment to my pelvic and sacrum. I'm also going to talk to him about the Palpation and Rectal Exam. Maybe soon I'll find some relief.

So, unfortunately, no luck or healing on my part. I did go and buy the book "Healing Back Pain" referred to by Todd's email. Hey, if I didn't injure the tailbone, and I don't know if I want to take a drug that has not been clinically tested, then what harm can a book bring.

Missy

Updated 2002-03-23




A good night's sleep

Mercedes de Miguel - mercedesdemiguel@hotmail.com

I had surgery to remove my coccyx a week ago, and the wound feels a bit better every day. Although very restricted still, every day I can do something else that I couldn't the day before. You can feel the changes in your body.

Fortunately, I managed to do without any drugs since the second day, and I sense how my body wants to heal and get back to motion soon. It's important to try walking a bit every day, even with those little and fragile steps we have at the very beginning. Get out of bed, and walk a little bit if you can. For me, it's harder to lay down than to stand, since it pulls the stitches more. So, I do try to move around the house, assisted by another person or even the furniture.

After 7 days of not getting comfortable in bed, I started to play around with the pillows. Lying on the back was not an option (too much pressure on the wound). Lying on the sides was difficult too, since I'd have to change sides every half an hour- too painful when turning. Hips and shoulders started to complain as well.

I finally found a more comfortable position while facing down, after 7 days of not getting much rest in bed. Maybe this can be of help to others. All you need is 4 pillows (you could borrow, ask, or steal from your neighbors if needed).

I really hope this helps you get a better night sleep after surgery, you'll be better soon. Just that minimal extension in the lower back, while lying down, was the most difficult thing for me and caused pain. Maybe you'll feel different after surgery. Explore.

Update 4 days later:

It's now been 11 days post-surgery. Last night we went to a small farewell party, which I was planning to attend only for a short while. I was doing very well, and we managed to stay for 3 hours; standing, walking, and talking to a few friends. It felt like a great accomplishment.

Once at home, it took a long while to find a comfortable position to sleep in bed. Everything hurts and pulls more the minute I lie down. After half and hour of trying to fall asleep, I had to get up again and move those 5 pillows. I visualized an effective way to sleep FLAT ON MY BACK, without touching the surface with my sore area, the butt. I had to tried out, and it worked !!! After repositioning the pillows, I felt asleep right away and woke up 8 hours later rested.

All you need is 5 PILLOWS (you may need to borrow some, but it's well worth it). One for the head, two for your lower back, two more for your upper legs. LEAVE A GAP between the pillows in your lower back, and the ones supporting the upper legs. This is the essential gap that will raise your buttocks from the mattress, so the wound and stitches can be pressure free, while your back is well supported !!! And you are on your way to a good night sleep.

Updated 2002-07-07




Sacro-coccygeal pain

Michael K - cdkmek@cfl.rr.com

Having sacro-coccygeal pain since October 2001. Tried several Chiropractors, Acupuncture, Orthopedic Surgeon, Neurosurgeon, Physiatrist, Neuros, Physical Therapy, and Massage. Currently on Vioxx once a day, Neurontin twice a day, and various narcotics. All but the neurotin help to some degree.

I've only had internal message of soft tissue along with coccyx movement.

Also looking for any feedback on the following injection technique: Coccydynia/Levator Syndrome, A Therapeutic Test, or others.

So I don't have to repeat myself whenever I see a new practitioner, I give them a copy of the following. Any comments you have after reading the profile that follows is appreciated. Thank you.

History of Back and Sacro-coccygeal Pain

Symtoms of Sacro-coccygeal Pain

Body Positions that aggravate sacro-coccygeal symptoms:

Relieves symptoms:

Neutral to Aggravates Symptoms:

Neutral to Symptoms:

Possible Contributing Factors to Sacro-coccygeal Pain

FACTS:

OPINIONS BY OTHERS:

Questions to Ponder:

Updated 2002-05-05




Coccydynia or pilonoidal cyst?

Michelle - punkinmw@localnet.com

I am a 21 year old female. I have pain in my tailbone that makes it difficult to sit up straight and to lay on my back. I get it about every month or two and it lasts for about 3 or 4 days. It hurts very much when I touch it and I have a very hard time sitting during these few days.

I was looking up information online about coccydynia and Pilonidal Cysts. I am not sure which I would have if any at all. It is very aggravating and I just wanted to have a clear idea on what I could possibly have before I go to the doctors so I can give them something to look for.

Please let me know if anyone knows if this sounds familiar and what it is. Thank you.

Sincerely,

Michelle

Updated 2002-02-17




Decided to jump right to the surgery

Michelle

Original posting, 2001-12-02:

I am 23 years old and a mother of one. My pain in the behind started after delivering my son 1 1/2 years ago. Walking, bending over, sitting, driving/riding a few miles, etc... were very painful to do. I decided a month ago to visit my family physician who sent me for some X-rays. The Radiologist stated in his report that the coccyx was not broken. I started to believe that the pain was just something in my head because of the little remarks my family physician and the x-ray techs were saying. They couldn't believe that I injured my tailbone during childbirth. Many thanks to this wonderful website, I've found that I am not alone!!!

My family physician referred me to an Orthopaedic Surgeon who specializes in the spine, Dr. Thomas Merritt in NW Ohio. The Dr. examined the x-rays and asked many questions. He gave me all my options leaning more towards the anti-inflamatory shot or the surgery to remove the tailbone. After reading many stories on this website, I decided to skip the "temporary-fix" and jump right to the surgery. I am scheduled for January 7th, 2002.

Please feel free to e-mail me. I would like to hear from others who experienced pain like myself and underwent surgery.

Update 2002-01-20:

One day after surgery ------ Today, I arrived home from Flower (sp?) Hospital at 12.00pm. I am experiencing a lot of numbness and pain in the coccyx area. It is especially hard to get out of bed and also to use the rest-room. I have not yet had a bowel movement and frankly, I am not looking forward to it either!

I will tell you everything that I can remember after my arrival to Outpatient's Surgery yesterday. I was due to arrive at 9.30am – we were running early and got there at 9.15 (very odd for us to be early!) I signed in with the receptionist, got my wrist band and tried to search for a few open chairs in the hectic waiting area. Soon after, the Lab Tech took me back to a room and drew three vial of blood after poking around in my right arm. She released me back to the waiting area. Approximately 5 minutes later I was taken back to be prepared for surgery. I had to remove every ounce of clothing and also remove all jewellery. This was a little upsetting – I have my nipples pierced and they had just passed the 6 month healing time and I had to take them out – Grrr! The nurse had me wear a gown, asked a million questions and inserted my IV. The anaesthesiologist popped in to introduce himself, my surgeon stopped to say they were cleaning up from the last surgery, and asked a few questions. At 11.45am a goofy nurse strolled me on the stretcher to the operating room. It was nice to have him make me laugh when I was scared and nervous. They parked my stretcher right alongside the operating table. The anaesthesiologist administered a shot through my IV and had be take a few breaths from an oxygen mask.

Next thing I know, I am lying on my back with tears streaming down my face. I asked if I could flip over to my side and some jerk said no. I was in excruciating pain and wanted to rip his hoohoo off! I eventually scooted onto my side freezing and uncomfortable with this breathing tube shoved in my nostrils on full blast. It was hard to keep my eyes open and I was really lucky to have wonderful nurses wherever I went. I was given a few small doses of morphine in my IV before I was able to see my husband and mom at 3 pm. I was given water and jello about an hour later and at about 5.30. I was served a delicious dinner. I didn't ask for any pain meds again until midnight – I couldn't sleep. This morning I took a Vicodin and then two more before my journey home.

I am unable to tell at this point if the surgery helped me. The doc said he removed two parts of the loose tail-bone and it looked like an old fracture. If I left anything out let me know and I will try to answer it.

8 days after surgery ---------  I have experienced draining (blood/water looking mixture). I am still having troubles sitting at all. I am basically only able to walk around or lay down on my side. Yesterday 2 of my steri-strips fell off of the incision and exposed a hole big enough to put the end of a pencil in. I was to go to the doctor today to have it checked out but my husband looked at it this morning and said there was now a layer over the hole and it looks like it is trying to heal. I am due to go to the doctor on Thursday to have my stitches removed, honestly, I don't think they'll remove them yet, maybe next week.

Update, 2003-04-20:

Since I have received so many emails from my posting on your website I have decided to do an update and have you remove my email from the page.

Since my t-bone surgery, January 7 2002, I have zero pain! Knowing now that I would be 100% recovered, I would do it again. It's just getting past those first few months post-surgery that are a PITA (pain in the ass)! I am pregnant with my second child now (due in mid-August), and am hoping that this delivery won't refracture the remainder of the tailbone.

If you'd like to visit the website of my orthopedic surgeon, it is: www.orthopleiades.com

Thank you!

Michelle




Thanks!

Mike Rutland - mprutland@juno.com

I was thrilled to find a site that devotes itself to coccydynia. I've often lived with an "uncomfortable" tailbone. The experience went from uncomfortable to painful about 2 months ago.

I have to drive a lot in my job. After a 3 week period of being on the road more than usual, I found myself unable to sit down without a great deal of pain.

I put up with it for a couple of weeks then visited my family doctor. He took an X-ray and found inflammation but no cysts or other obvious abnormalities. The doctor then ordered a round of "Etodolac" (400mg) for 30 days and sitz baths 3 times a day. This has provided only a minimum of relief.

I revisited him a little over a week ago and he told me that he had done all he could for me! Those were not words I wanted to hear.

Tonight, I decided to surf the web and found your web site. Now, I know that I'm not alone and that there are other treatment options.

I'm looking forward to finding relief. Now I know it's possible.

Updated 2002-09-29




Mystery pain was caused by a broken tail bone

Misty

Note - Broken tailbone

Doctors often wrongly diagnose 'broken tailbone' when the tailbone is dislocated at one if its joints, not fractured. More detail on 'broken tailbone' here.


Original posting, 2001-11-25:

I am a 34 year old mother of three. My problems started when I fell on the ice in December. I broke my tailbone when I fell but did not know it at the time.

I started having horrible abdominal pain a couple of months later. It was worst when I rode in the car for more than just a few miles. It also hurt more if I had gas or a bowel movement and when I had sex.

I have had ovarian cysts forever. They cause me a lot of pain but usually only a few days each month. When the abdominal pain wouldn't go away I went to the doctor. I had an ultrasound, a CT scan, a colonoscopy, X-rays, and an MRI. They couldn't find anything wrong with me. I got pain killers and anti-inflammatories and advice that I get used to the pain.

Eventually the sciatic nerve on my left side got irritated and started shooting pain down my left leg. I went to my chiropractor. This was in June 2001. He asked if I had fallen. He suspected that I might have fractured a vertebrae or broken my tailbone. I didn't remember falling. He asked if I had gotten any x-rays related to this pain. I told him that I had gone through all kinds of test. He wanted to know specifically if the x-rays and MRI had looked at my tailbone. I didn't know. A call to the other doctors confirmed that they had not looked that far down my spine.

He immediately x-rayed me again and looked at the tailbone region this time. Sure enough. My tailbone was broken and shoved forward about a half inch. He explained how the nerves in this area can affect the kidneys, bladder, uterus, and basically the entire pelvic floor. It all made sense finally. He referred me to a orthopedic surgeon and told me to get a "donut" pillow.

The first surgeon I saw was concerned that I may have fractured a vertebrae and that might be causing the sciatic nerve to be irritated. He did not feel that the broken tailbone could be causing all my pain. He ordered additional MRI's. The films confirmed the broken tailbone but no additional fractures. This doctor then told me that I needed to see a general practitioner because he did not specialize in broken tailbones and could not treat me. I felt abandoned. I sat in the parking lot and cried. I called my chiropractor and we found another orthopedic doctor for me to see.

This doctor told me my options were pain medication, anti-inflammatories (both I was already doing), corticosteroid shots, and surgical removal. I underwent two shots. The first helped for two weeks. The second for two hours. The doctor said he could only give up to four shots over a one year period. He advised me that since it had been almost a year ago that I broke my tailbone the shots probably would not work. This meant that I would have to live with the pain or try surgery. Meanwhile, I was taking pain killers and was not able to fully do my job. I had to time the medication so I could drive to and from work, church, shopping, and driving my children to their activities. I was ready for anything else that might work.

The doctor had only done one of these surgeries before and did not feel comfortable doing it. He referred me to a doctor in Oklahoma City who had done 20 of these surgeries. I met with him and he agreed to do the procedure. I am scheduled for surgery on November 27. I am excited and hopeful.

I sympathize with everyone enduring the pain associated with a broken tailbone. This is the first broken bone I have ever had. I would have preferred a broken leg, I am sure! Updates later.

Misty

Update, 2002-04-07:

It has been four months since I had my broken tailbone surgically removed. I have heard from several people who shared similar pain and wondered how I was doing. I have shared with them individually and thought my story might be helpful to others. So here it is.

I experienced immediate relief from the pain I had from the broken tailbone. Don't get me wrong. The area where I had the surgery was very painful and tender for several months. But I can honestly say it was worth it! My tailbone pain is completely gone. I feel wonderful! I just went skiing for the first time in Colorado with my family for spring break. Yes, I fell several times on my rear end, and still had a great time.

I spent nearly a year with a broken tailbone. I saw five or six doctors. I had a hysterectomy, a colonoscopy, CT scan, every test you can imagine trying to find and eliminate the pain. My chiropractor was the one to diagnose it. I had pain shooting done my leg. He X-rayed my tailbone and found it was broken off and shoved out of alignment by 1/2 inch.

My next challenge was to figure out a treatment. I saw an orthopedic doctor. He tried to push the bone back into alignment. You can use your imagination on how that was done. The bone wouldn't budge. The muscles and tendons in the area were too inflamed and tight. Next, we tried corticosteroid injections at the sight along with anti-inflammatories and pain killers. After two injections and two months of drug treatment, the pain was worse. My doctor referred me to a surgeon.

The surgeon offered to try another injection using an X-ray to put the medication right at the site of the break. We decided that if two injections hadn't helped, the third was not likely to be any different. Surgery was scheduled for the earliest open date.

I am not a big fan of hospitals or surgery. But, at the time, I was in so much pain - all the time - I was looking forward to it and counting down the days. The hospital was a very small surgical hospital in Oklahoma City. The only patients there were in for surgery. The staff was excellent. If you needed something they were there in seconds - really! I would recommend it to anyone.

My doctor and his staff were wonderful! They rescued me from a year of hell! Good luck to everyone. Don't give up, there is help out there.

Note from Jon Miles:

Misty's doctor does not want his name listed here. See the list of doctors and other specialists for a doctor recommended by other patients.




Any link between coccyx injuries and IBS?

M O'Brien - TheVooDooThatIDo@aol.com

I am a 33 year old female who one year ago, slipped at work breaking and misaligning my coccyx bone. Two days following that accident, I began experiencing severe lower abdominal pains that felt as though something sharp was slowly creeping through my small intestinal tract. One of which sent me to the emergency room. Along with the lower abdominal pains, I eventually developed an extreme abdominal pressure that intermittently appeared in my lower right abdomen.

Up until that point, I had never experienced any digestive problems. In fact, I have no prior medical history whatsoever with the exception of routine pediatric care.

After a year of severe and consistent constipation and abdominal attacks, several of which I managed to confuse as appendicitis, just this week I was finally diagnosed with Irritable Bowel Syndrome (IBS). Moreover, I was told that the lower right abdominal pains are prompted by dairy products and that 40% of IBS suffers are Lactose intolerant. With that, my doctor has prescribed Baclofen, an antispasmodic, to reduce gastrointestinal spasms.

While I almost refuse to believe something as simple as IBS (or milk for that matter!) could cause the devastating pain I have experienced over the past year, I am thankful I wasn't told I had a bowel obstruction. Or Cancer for that matter.

Other problems I continue to experience is an inability to walk for more than one hour, heel spurs, as well as an aversion to sitting on anything soft or padded. (It seems as though it should be the other way around doesn't it?) For these specific pains, I was prescribed Lidocane patches. People, I cannot tell you just how wonderful these 12 hour patches truly are! They are a must for anyone with back pain! Pain killers didn't do 2% of what these patches have done for me and I couldn't live without them!

Anyway, I have been informed by my doctor as well as the Office Of Workers Compensation Program that there is no definitive link between coccyx injuries and IBS in any form. I was wondering if anyone was aware of any current or documented studies that have attempted to link coccyx trauma with severe IBS. If so, I would appreciate your response.

Updated 2002-05-05




Impending surgery - now had it

Nana - emk@friend.ly.net

Original message: 2002-06-02

I am mostly called Nana these days (I have 8 grandchildren, the oldest is 8!) so please feel free to address me that way. I was prompted to write because of Jeff's story and the fact his orthopedic surgeon works with a colorectal surgeon when removing the coccyx.

My pain started September 29, 2001 when I was wheeled out of surgery after having 19 inches of my descending colon and most of my rectum removed due to diverticulitis. My number one complaint from day one after the colon surgery has been pain in my rectum. At three months post-op the colon surgeon did a sigmoid scope exam which was normal. Because I continued to be in such pain, he did an extensive internal that was unremarkable except for excruciating pain when he put pressure on my colon adjacent to my coccyx. I went to see my orthopedic surgeon and he too found extreme pain when examining my coccyx both externally and internally. He had two conversations with the colon surgeon and my impression is the colon surgeon completely dismisses the notion that it could have been a result of the colon surgery. I also believe, because of the expression on his face, that my orthopedist is not that convinced that it could not be a result of the colon surgery.

In the meantime I have had 2 MRIs, a CT Ssan, Xrays, 3 cortisone shots, 1 lumbar epidural, and have been on every medication available and nothing helps for more than a few days to a week. I can't sit so I have missed a lot of time from work (thank goodness I have a great boss who lets me come and go as my pain dictates). I can't sleep because I can't get comfortable; before and after having a bowel movement I'm in dreadful pain; I can't drive more than 10 minutes, and when I walk any distance the pain is like bones rubbing together. My pain has spread to my buttocks, mostly on the left side; my heels hurt like I have stone bruises; my thighs ache; my legs get so weak sometimes I feel like they won't move or will collapse under me; I get pins and needles in my feet, and the nerves/muscles in my legs jump so much you can see them move.

I have every confidence in my orthopedist, he has moved me along slowly trying everything he can. I take Lortab for the pain and Ambien to help me sleep, and I am scheduled for surgery on June 11th, I feel I have no choice.

I'm going to take a copy of Jim's story with me when I go for my pre-op visit next week and I'm going to send a copy of it to the colon surgeon. I will keep you informed of my progress and of what both doctors have to say when I give them a copy of Jim's story.

Thank you for this opportunity to share my situation, I guess misery really does love company. I look forward to hearing from folks and would particularly like to hear from anyone that has had a similar experience following colon/rectum surgery.

Nana

Update 2002-06-16:

Hi, wanted to let you know that I had my surgery last Tuesday, June 11th, at 7 am and was home by 1 pm. I was worried about the trip home, but I have a van, and the 3rd seat lays flat so it wasn't as bad as I had feared. Actually the whole experience so far has not been a traumatic as I had anticipated. After trying all the chairs in my house I found I can sit for a short while on a caned seat chair. I cannot shower or bathe (just sponge bathe) for a week and I have to have the bandage changed every day and check for infection. I am on pain medication and took it regularly the first few days, now I'm taking it as needed which is once or twice a day and at bedtime, along with a sleeping pill. I have a check-up one the 19th and get the stitches out on the 27th.

I was told I can start thinking about going back to work in four weeks, depending of course how long I can sit, particularly in the car. I have a 30 minute drive barring any traffic tie-up, which happens pretty regularly. Fortunately for me I have a very understanding boss who will work with me, and is even considering letting me telecommute for awhile when I'm up to it.

I have developed pain in my hips which I'm sure is bursitis as a result of only being able to sleep on my sides since this happened. I'm taking Vioxx, which was prescribed for my coccyx but didn't work for that. I'm also putting ice on them several times a day for 20 minutes at a time. I'll discuss it with my doctor when I see him next week.

I'm very angry at the colon surgeon as I feel all the pain I have been going through for so long could have been resolved very quickly if he had been straight forward from the beginning. It took nine months for me to get to this point and now I have the pain in my hips to contend with too.

Have been disappointed not to hear from anyone, was hoping to find out if anyone else had a similar problem after colon/rectal surgery.

I will keep you posted as to my progress.

Nana




I am terrified of having surgery . . . . now had it, a complete success!

Nicole - Nicole.Morris@act.gov.au

Original posting, 2002-10-06:

Hi, my name is Nicole and I am 27 years old from Australia. Thank goodness I found this website because like so many others, I thought it was all in my head and I was overreacting (as I am sure others thought I was as well).

I have had coccygodynia for about 3 months now, like a lot of others, at first, it was just a dull ache when I stood up from sitting. I ignored it and thought it would go away for about 4 weeks but the condition got progressively worse to the point now where I can no longer sit at all without severe pain. By this stage I knew something wasn't right so I went to my 1st doctor who prescribed me anti-inflammatory medication and said that my ligaments around my tailbone were swollen!!

After 2 weeks, I had no relief and went to another doctor who immediately diagnosed me with coccygodynia and sent me for CAT scans, which showed no abnormalities but a very curved upwards coccyx. The options put to me were cortisone injections which would be painful and temporary or may not even work at all OR surgery, although I was told that when I have children it will probably snap off while giving birth!!! A pleasant thought - NOT!!!

I have since been referred to a neurosurgeon/spine specialist who I will see next week. I am very grateful however that so many people have shared their stories as I have armed myself with many questions to ask the surgeon. Even though I have read quite a few negative surgery stories, I am still certain that it is the only real option for me as I don't want a temporary fix and the having the probability of it reoccuring. I realise that recovery may take a while but the thought of being like this for the rest of my life is unthinkable. I am very surprised that so many people suffer from this condition and pain as I was told it was quite rare.

Anyway, I would love to see some pictures/photo's of people's cushion designs that have helped them as I have nothing that helps me at present.

Keep the stories rolling everybody, it really makes a big difference knowing that we sufferers have somewhere to share our experiences, god knows no-one else seems to understand!!!!!

Until next time, take care and bottoms up!

Updated 2003-01-19:

Well last time I wrote to this website I was not in great shape. I was in a lot of pain, very frustrated and bordering on depressed. However I am pleased to say that I am now a completely new person. I had my coccyx removed on 28 October 2002 by a neurosurgeon/spine specialist. Apparently I had a very "mobile" coccyx which looked like a fish hook (as it was hooked upwards). The common condition of excruciating pain of sitting and sitting to standing was very much an issue with me.

I spent 4 days in hospital and was up walking around the next day. I won't lie and say it wasn't a painful experience, especially getting the 11 staples removed from my butt crack - OUCH. But can tell you that I noticed the improvement immediately. The sharp intense pain of sitting and sitting to standing has completely vanished. I just get a burning achey sensation in the surrounding tissue of where the coccyx was.

The actual wound (6 cm cut down butt crack) took a long time to completely close (8 weeks) and I think that could have been because the surgeon put in staples instead of stitches???? But 10 weeks on, I am back at work and am able to sit "normally" for extended periods of time. I still have painful moments and have to choose my seating carefully (need soft padded chairs) and find driving for more than 20 minutes a bit too painful but still 100% to what I was beforehand.

The surgeon said it could take 6-8 months before I am completely free of discomfort and I am fine with that because the way I am now is completely tolerable, unlike before the op. I do advise anyone having the operation to expect a lengthy healing process, as I mentioned above, I had 10 weeks off work and wouldn't have been O.K to return before the 8 week mark.

Anyway, I hope this helps anyone who is in two minds of having surgery and wish everyone good luck in their endeavors to be pain free.

Nicole




Help wanted and needed

Pat - NYPatriciaAnn@aol.com

I am a 40 year old female who just was diagnosed with coccydynia. I have been having pain in my tailbone since October 2001. My family physician had me see a physical therapist which did not help.

The pain is so intense that I am finding it difficult to work at my desk job. The neurosurgeon did not seem to be sympathetic when I told him that I find it hard to drive an hour and a half to work each way and then sit at my desk all day. I am considering going sick from work.

The doctor has suggested that I see a pain management specialist. I need this pain to go away in order to function, it is controlling my life.

Any suggestions from yourself or anyone with this terrible condition?

Updated 2002-05-12




Doctors in the Netherlands?

Paul

My wife has for over 5 months had pain in her tail bone and it goes as far as her lower back. She first had this pain from sitting on a chair, and then it did not go away. She went to the doctor and an x-ray was made, the doctor concluded that is was her tail bone and told her that she needed to take it slow and not to sit down so much, and then the pain would go away. Now 4 months later there is no result, so she went back to the doctor and he has sent her to a pain clinic.

Reading on your page I see there are a lot of people who have the same condition as my wife. But there is no one from the Netherlands (or Holland in Europe). And I can see no doctors in the Netherlands on the list of doctors .

There has been made only one x-ray and she has to go directly to a pain clinic for treatment, but here on your site a see a lot of other investigations and treatments that go further than just go to a pain clinic and have a pain control treatment. I think (reading on this site) that going to a pain clinic is seeing the wrong doctor and undergoing the wrong treatment.

I also cannot find any information on the internet in the Netherlands, so I have the following questions:

- Is there anyone here from the Netherlands here who has success (or not) with a treatment in the Netherlands, and can you give me the name of the doctor?

- Is my conclusion correct that we are going to the wrong doctor, and should we see a different doctor first who can analyse the condition of the tail bone pain better (more investigations?) or can a doctor conclude the source of pain from one x-ray.

I would really like some reactions from people, because it affects the whole family.

I cannot feel her pain but a hate it that I can not help her, other than doing household jobs.

Paul

Updated 2002-10-13




Very long tailbone

Rayne

Original posting, 2002-11-17:

I developed tailbone pain while sitting for long periods in an office. It was terrible and I cried myself to sleep many a night because nothing gave me relief. I just couldn't understand how it developed almost overnight.

Unfortunately this site of support did not exist and I thought I was going mad. I went to several doctors but they could do nothing. One chiropractor suggested I have my tailbone removed but could not guarantee recovery. I tried donuts to sit on and pain killers. Then I developed hemorrhoids on top of this problem. I finally changed jobs to one which required more standing. The pain finally went away a few months later.

Now, years later, I started a new job which requires sitting again. The hemorrhoids are back and I'm afraid it's only a matter of time before the tailbone pain returns. It will again prevent me from doing the things I love, such as biking and snowmobiling. Not to mention making my day of sitting unbearable. I live in fear that I'll have to give up my job.

Update 2002-12-15:

After many painless years, my coccyx pain has returned due to my new job which requires sitting at a desk most of the day. I'm miserable.

I started seeing a new chiropractor who took new x-rays. He was shocked at the length of my tailbone. It's twice the size of a normal tailbone and even has a joint where a joint where a joint shouldn't be. I've been to 2 other chiropractor and an orthopedic surgeon. All took x-rays and I even had an MRI. I remember one mentioning that I had a long tailbone, but never said it was unusual and shrugged it off.

This new doctor was shocked. He had never seen anything like it. He also said my tailbone was crooked causing a misalignment of my sacrum. He suggests I talk to my boss about getting a stand up work station. He doesn't think surgery is necessary and may cause other problems. He's going to do more research and adjustments.




Injured my coccyx while tobogganing

Robert G

I injured my coccyx while tobogganing, I didn't want to take that last run, boy have I paid for it these last 2 years.

I visited my Chiropractor, he tried adjustments, nothing improved. I then got x-rays done (a year later), showing that arthritis has developed in the area. I tried the cortisone shot, the pain of the shot was worse than the original pain for 2 weeks, only temporary relief. When the pain flares up Tylenol does help, again only temporarily. I tried exercising, it does give some relief, but you have to keep at it.

A friend of mine with this discomfort tried acupuncture, it gave her 50% relief, so I'll give it a try. I can relate to ANON6, the symptoms are quite similar. I'll give an update after I have this done.

Robert G.

Posted 2001-05-14

Update

It has been about a year since I said I was going to try acupuncture. I was waiting to get it done free through our health system and I'm still waiting for an appointment. I couldn't wait any longer. I went to an acupuncturist and paid. I had 9 treatments that were very uncomfortable and expensive. After the 3rd treatment, I felt some relief when lying down. When sitting, there was still no relief. After the 9th treatment, still no relief, I gave it up. The doctor said because of the delay in getting acupuncture treatment, on a 3 year old ailment there was a lot of work to be done to fix it. It was getting expensive and I wasn't feeling any better. I guess I'll be looking for another alternative. I hope someday to write you back and tell you a success.

Robert

Updated 2002-01-13




Hard knot at top of tail bone

Robin - rlrmac@msn.com

I'm writing in concern of my 19 year old daughter. She has a hard knot at the top of her tail bone which is causing her great pain when sitting, driving and now even standing. She has recently lost about 20 lbs. and is now at a weight of 120 lbs. and only since then has her pain started.

The doctor say's that she may have possibly fractured her tail bone from a slip in the bath tub a couple of years ago that improperly healed, and only now since she has lost weight and padding from her rear has the pain surfaced, with surgery to remove the tail bone being the only option to stop the pain.

I would love for anyone with a simular situation to email me.

Updated 2002-01-13




Looking for an orthopedic surgeon

Ronald Sabourin - ronald.sabourin@sympatico.ca

I have been advised that having my coccyx removed is the only solution for me. I come from a small town, and am desperately looking for an orthopedic surgeon specializing in back surgeries in Ottawa, Ontario, Canada.

Can anyone help me?

Note from Jon Miles:

Here is a list of doctors that I have heard of who have been recommended by patients or are the authors of medical papers on the subject.

Wherever you live, if you would like to recommend a surgeon, orthopedic specialist, manual therapist, or other practitioner, please let me know, so that I can add to the list.. You can contact me here

Updated 2002-01-27




Change in weather causes severe pain

Ronda - Dingdangit@aol.com

My daughter is 10 years old. About 2 years ago she slipped on some wet pavement outside of a restaurant. She laid there for a few minutes in excruciating pain. My mother and I helped her to her feet and she hobbled into the restaurant crying. She couldn't sit down to eat. We were in between softball games and when we returned to the field she started crying again and told me she couldn't play because it hurt too bad. So she sat on the bench, but it was just that one game, she said she was fine to play the next. She played the rest of the tournament with a little pain in her tailbone.

She told me that it only hurt a little the next morning and that was it, no more complaints after that. Later that year she slipped in the kitchen floor, flat on her back, screaming, she couldn't get up. I calmed her down and helped her up. She went to her room and laid down for a while. When she finally got up she only had a little bit of pain in her tailbone. Ever since that day she gets severe pain in her tailbone when the weather changes, almost like arthritis. The severity of the pain almost incapacitates her. That is the only time her tailbone hurts.

All I've done is just given her Tylenol and seems to go away. I've never taken her to the doctor over it or even mentioned it to the doctor when I've had to take her for something else.

Is this something she's probably going to live with the rest of her life? Is the pain probably going to get worse and/or more frequent? Is this in fact some form of arthritis?

If anybody has any answers or comments I would greatly appreciate any advice.

Updated 2002-12-22




Injection caused more problems!

Samantha, UK

I had a steroid and anesthetic injection 6 months ago, and due to go for another one in 2 weeks time. I have decided not to have another injection because since the first one I have not been able to go to the toilet and empty my bowels. After having the first injection I didn't go to the toilet for nearly 2 weeks, now I am still having trouble, I am not constipated, but my muscles have taken on this injection, therefore are not working properly, my doctor has advised me it will all come back eventually!!! I think this has been more misery than the pain itself. I haven't found anyone else on the site that has had this problem, is it just me? When I go back to hospital in 2 weeks to speak to my surgeon, I am hoping he will come up with another suggestion, although he has already told me he refuses to remove the coccyx as he has done this before and the pain didn't go away.

I think I will carry on suffering with the pain until I find a good doctor!!!!

Updated 2002-06-02




Ibuprofen and physical therapy didn't help

Sandra -  eriepuffin@aol.com

My experience is much like Melissa Schlee's. No accident, just the start of tailbone pain about 6-7 months ago. It has gotten worse, so I went to the doctor. Took ibuprofen, 800 mg, 3 times a day for a month with no improvement. Also went to P.T. No change. X-rays negative. Am now trying Naprosyn and thinking about going to an orthopedic surgeon. He has not seen this condition very much, so I don't know if it is worth it. He would inject the area, and I wonder if anyone has had any relief with that treatment.

I am 65 yrs. old and active, so the rest of me is OK!

I do use a coccyx cushion which is much better than a donut.

Sandra

Updated 2002-01-20




Treating coccyx injury with acupuncture?

Scott - s2796@hotmail.com

I am glad to find this site since there is very little information out there about coccyx (tailbone) injuries/pain.

I have tried physical therapy, but results have been limited. What I wanted to know is if anyone has tried acupuncture? If so what kind of results have you had?

Thanks in advance. Scott

Updated 2002-06-23




Having surgery January 16

Shellie Golden - sgoldenmn@aol.com

Posted 2002-01-13:

On November 12, 2000, I gave birth to my beautiful daughter. Had an epideral...no pain. During the "pushing" (only 40 minutes) we heard a very loud "POP" sound. Everything stopped. But then we kept going.

After over a year of terrible sitting and sitting to standing position pain, weeks of physical therapy, injections, finally a diagnosis. My coccyx bone is broken. The doctor (he has done three of these operations in the last 20 years) set up surgery for me to have it removed. Wednesday, January 16, 2002 is the date.

I would like to hear from others that have had the surgery. I am a secretary and sit most of the day. The surgery is set up as out-patient, but the doctor thinks I might have to stay overnight if the pain is too bad. He thinks I will be out of work about 2 weeks. Any information would be great!

My e-mail at home is Shellie Golden - sgoldenmn@aol.com. Thank you. I live in Duluth, Minnesota.

Update:

I did have the operation on the 16th and just got out of the hospital this afternoon (January 22 2002). The surgeon thought it would be as an outpatient, but no way. Too much pain. The doctor said the surgery went well. He used all dissolving stitches...so that I won't have to have them taken out. He also used a new dressing that releases a silver ions over 7 days. The doctor said that worked great.

My biggest problem was feeling like I was going to throw up and being constipated. I was in a ton of pain after the surgery so I was given a lot of morphine. I was finally taken off the morphine on Sunday afternoon and just given Lortabs. I cannot sit at all. I did sleep pretty good on my sides. I just kept switching sides. My elbows are raw from using them to lift myself to roll over. The car ride home today was not too bad...I just leaned over in the back seat. I cannot return to work until I see the doctor again. He figured one to two more weeks.

I am very happy I had this done. Good luck! Any further questions, please email me.

Shellie

Updated 2002-01-27




Looking for Dr. Lithwick or his patients

Silvana Sdao - s_sdao@hotmail.com

Jon, your website has been very interesting and useful to us. My husband has severe coccydynia, and it is good to read about others who share the same problem. Most recently, he has tried nerve block injections and travelled weekly to Toronto for seven treatments, however this was of no relief to him.

On your website, we read of Dr. Lithwick, a specialist in Toronto, on your list of recommended doctors, however we have been unable to locate him. We would like to hear from any of his patients, as to his whereabouts, or from the patients of Dr. Hoffman in Thunder Bay, Ontario.

We live in Northern Ontario and would like to hear the results of surgery from patients of either of these doctors.

Updated 2002-09-22




Tailbone pain and lump

Stef - wishythewishgivr@Aol.com

Original message 2002-05-26:

I'm only 14 and to tell you the truth I hate doctors. They scare me a lot. So I've been trying to avoid seeing one since this pain started about 2 weeks ago. I never fell or anything I just woke up one morning and noticed that I had a slight pain in my tailbone. Then a couple days ago I went riding on our jet ski and I either ruptured something or just irritated it, but it hurt a lot more. I took some pain relievers and thought nothing of it.

Well now I've been awake all night because I can't sleep because it hurts so bad. I also noticed a lump developing. It wasn't there before and it doesn't hurt to touch it but to touch around it hurts...

If anyone else had this problem please email me and tell me what you did about it.

Thanks! ~Stef

Update 2002-06-16:

Well, I saw a doctor, and found out I had a pilonoidal cyst. They are very painful and are basically abscesses that are caused by a cyst. They eventually fill with nasty stuff (you don't want me to tell you lol) and they have to be drained. Not a fun experience, but I had surgery the day after I posted my last post and now I'm so much better. The pain was relieved almost instantly, it was only sore from the surgery afterwards. The only inconvenience is that it has to be re-packed everyday with packing strips because it is an open wound. But I'm almost totally through with my ordeal and I'm glad I saw a doctor. If you think you might have the same thing, don't wait to see a doctor because the infection could spread through your whole body!! ahhh.

-Stef




Pain in the a*!@#$

Stephanie Spresser - sspresser@mcleodusa.net

I have been experiencing tailbone pain for the past 4 months. It started around the time I found out I was pregnant in Dec. 2001. I am now 4 1/2 months pregnant and fell down the stairs in my house 3 weeks ago. I went to the ER but due to the pregnancy they cannot do x-rays.

I am now in so much pain it almost makes me cry to sit. I have a desk job and try to get up and walk around as much as possible. Standing up at my computer wouldn't work either because my feet and legs will swell due to the pregnancy. I don't think the fall made the pain any worse, but I don't know how much longer I can live with it. I go back to my doctor in one week and I'm going to beg him to do what he can without harming my baby.

Stephanie Spresser

21st Century Project Director

Boys & Girls Clubs of Springfield

Updated 2002-03-31




Is this normal?

Sue - dsa_atl@yahoo.com

I injured my tailbone last year in January. I slipped on a tile floor and proceeded to fall directly on my rearend with my son in my arms. At the time I was grateful that my son had not hit the floor and was "glad" that I had fallen in the position that I did.

After falling (we were out of town), we had a 12 hour drive home. My pain has gotten progressively worse. I sit at a computer all day long and it is very painful to sit. I went to my medical doctor and she ordered a full x-ray on my spine including my coccyx. Everything came back normal. I have severe lower back pain, pain in the backs of my legs, pain in my rearend muscles. I have noticed that it is sometimes painful to go to the bathroom especially when I haven't gone in a while. It is more painful to sit on one side than the other.

Please tell me I'm not absolutely crazy and that there are others in my situation.

Updated 2002-01-27




Need information

Sue - deaner4ever@yahoo.com

Hello.. I need some information please!!

I need to know how long it took to feel the pain of a fractured tailbone after injury to it by falling.. My doctor says I would have felt the pain right when I fell, but it took around 3 months to feel the pain. First it was a dull pain, then came to worse with time.

My doctor says the pain increased because my ligaments around that area became inflamed. She said I would have felt the pain from the fracture right away. Has anyone not felt the pain right away when falling on their tailbone?

Please email me at deaner4ever@yahoo.com.

My name is Sue..thank you.

Updated 2002-02-17




How I help my Coccydinia pain

Sue Thompson - suethompson2000@hotmail.com

In a nutshell, I've suffered from Coccydinia for over 7 years. I've had strong painkillers & one steroid injection (neither worked), use a foam cushion at work & inflated rubber ring on long journeys.

If the pain gets very severe I've found that homeopathic remedies are the only thing that can help to touch that horrible pain in any way.

Sceptical before I took them, I was amazed that after 3 days taking Hypericum 10M the pain had stopped. I now use these pills (alongside Arnica tablets which you may know are used to relieve pain from bruises) only occasionally but they always work for me.

I spoke with a Homeopather at www.Ainsworths.com who prescribed my tablets over the phone for about £5! The way I saw it, when my Osteopath suggested homeopathy, I felt I'd try anything and I'm forever grateful I took his advice and made the call. Hypericum has a reputation for being suitable to treat nerve pain, especially around the coccyx ~ it could have been designed for us!

I see at least one other reader has commented on Hypericum's success with her coccydinia. I would love to hear from anyone who tries Hypericum and/or Arnica.

Good luck to fellow sufferers. I've found this site so helpful and it's good to know we're not suffering alone.

Note from Jon Miles:

Hypericum 10M is a homeopathic medicine. The '10M' means that it has been diluted by a factor of 1000, ten times in succession, so that the original Hypericum has been diluted by a factor of 1,000,000,000,000,000,000,000,000,000,000, and there is none of the Hypericum left in the medicine given. See Homeopathy for more information.

Updated 2002-04-14




A real pain in the . . . .

Sue Buckley - tonybuckley@btopenworld.com

Original posting, 2002-08-25:

I am a sufferer of coccyx pain. It began three years ago with no injury. Got gradually worse to the extent that I could not sit down except on one 'cheek' at a time or lie with my legs up at my side. Saw a specialist, who said there was no damage, and because I had had three pregnancies and a hysterectomy, that area was under more strain than normal. The pain can be mild to excruciating depending on the type of seat I sit on. Hard seats are a real no no. I find that I now have to sit very upright, balancing on my 'front' bones rather than on my bottom. Anti inflammatory tablets combined with painkillers usually ease the pain but I WANT IT TO GO AWAY. My specialist says it can take up to three years to ease but will probably not go away completely. Surgery is not recommended because it can cause other problems and is not always successful.

I find I now make allowances for the pain and I 'live' with it, knowing when to get up to relieve the pressure. I regularly just arch my back while sitting and this takes the edge off the pain. I am resigned to the fact that I will have some pain on and off for the rest of my life but try to just ignore it, although it is not a pain you can ignore.

I sympathise with all the sufferers on your site and am pleased that I am not alone in my misery!!

Sue Buckley

Update, 2003-03-30:

After prolonged treatment on anti-inflamatories and painkillers, I am now experiencing considerable relief. In fact I have had no medication now for three months.

One helpful piece of information for all you 'drivers'. There are two cushions you can use in the car available from disability companies.

One is called Coccyx relief cushion. The other is called the Boney Parts cushion. I bought mine from a local mobility shop.

With the latter cushion, I found fantastic relief, for both in the car and in the home. I am sure that relieving the stress on the area when driving etc. allows the tissues to rest and therefore give relief.

I hope this info is useful. By the way, they cost about £14.




Broken shoe caused a fall downstairs

Susan - s_donahue_mail@justice.com

Original posting 2002-09-01:

On August 19, 2002, I was at a lawyers' office for the closing on my new house. After the closing, we descended a flight of five stairs. On the first stair, the heel broke off my (brand-new, first-time-worn) left shoe and went flying. I fell on my tailbone and bumped on it down the other four stairs. Anyone reading this knows that I was in agony for several days.

It's a week and a day later. After many hot showers and ThermaCare heat wraps and much Tiger Balm, a couple of joints in the area have "popped" affording me some relief. What's left now is sort of a pinching sensation, less when I stand, more when I sit, making it hard to walk. When I move the wrong way I get a sharp pain at the very inside top of my right "cheek" that feels like a bee sting from the inside. Also, there is an aching pain associated with bowel functioning (it's worse when I have to "go" and then better afterwards.)

I'm concerned I may have a pinched nerve. Has this happened to anyone, & how was it treated? Also, I've read a lot about internal adjustments - gross as it sounds, I think I may need to have it done. I'm interested in hearing whether it worked for people, whether it hurt, and who exactly you go to have it done.

I am functional (barely), but the rest of my body hurts from altering the way I bend down, stand up, reach for things, etc. I'm sleeping OK because I sleep on my stomach anyway, but I hurt worst of all when I wake up, it's so hard to get out of bed and moving! Plus, I'm a very active person and right now I feel about a hundred years old, only able to walk slowly about 1/2 mile before I run out of gas. And I have a sweet little sporty car that I wanted for a long time and worked hard to get and right now is so painful to drive! You should see the folded towels and pillow arrangement I've set up in the driver's seat, it's pretty funny.

If this doesn't heal I am going to sue the pants off of the shoe company, the store that sold them to me, and the lawyers' office where I fell. Somehow, I don't think just getting my sixty bucks back on the shoes will make up for all the pain and aggravation I'm dealing with now. It's sucking the joy out of buying and moving into my very first house, I can't unpack my clothes or rearrange the furniture or pull up the bamboo that's taking over the garden in the back. Grrrr!

I send all the sympathy and healing thoughts in the world to those on this board who have been dealing with this pain for months or years. I can only imagine what it does to you dealing with these sensations and feelings in the long term.

Thanks - Susan

Update 2002-09-08:

I had x-rays done on September 04. My chiropractor received a written summary of the results (not the actual x-ray films themselves). I have a comminuted nondisplaced fracture of the lower sacrum, visible in a lateral view. In other words, my lower sacrum is broken into several pieces but they're all still located where they belong.

Of course there's nothing they can do but let it heal. I am going to get copies of the x-ray films so I can see for myself what's going on. My husband explored the spine/sacrum/coccyx with his fingertips; he said it feels like the usual up-and-down line of the spine is knocked slightly to the left at the lower sacrum/upper coccyx. Maybe he was just feeling one of the separated pieces.

Update 2004-02-01:

Over a year has passed since my incident. I improved by about 85% within 6 months and since then no further improvement. The area aches in the AM when I get out of bed, after any prolonged exercise, after an afternoon of housecleaning, and sometimes for no reason at all. I can generally go about my daily business with no problem; it's just reduced my overall enjoyment of life and generally makes me feel older than I am.

I'm now pregnant with my first child. I've read with interest postings by other women about the interaction between the stress of pregnancy/childbirth and their tailbone problems. If anyone else is out there who's gone through it, I'd really love to hear from you off-list; please email me at s_donahue_mail@justice.com. My very strong preference is for natural childbirth and I'd like to avoid a cesarean at all costs, but if I'm likely to have horrible tailbone pain on top of the pain we all expect to have during childbirth, I just don't know how realistic this is. Thanks! Susan




Oyster shell supplement causing tailbone pain?

Susan Seago - khysusarabians@hotmail.com

I am a 45 year old woman. Concerned for my bone health at my age, I began adding a calcium supplement to my daily diet. Over the last year, I suffered with tailbone pain. It had become so uncomfortable, I avoided sitting . This led to a doctor's visit and exam. I was told "we don't know what causes this pain, and don't know what to do for it".

Soon after I was to attend a conference out of state and forgot my daily vitamins, on my return trip, I was aware my tail bone was slightly less painful. The flight to and from my destination required my sitting all day, and provided an opportunity to measure my discomfort. Upon my return, I decided to discontinue my vitamin intake and within a month the pain was all but gone.

Soon after I took a B6 pill one night, for my carpal tunnel pain that flares up from time to time. I decided to take a calcium while I was at it. The next day, my tail bone was providing a dull pain. After a few days with no calcium, the pain was gone again. I then decided to try another kind of calcium. I am certain my pain was caused by taking oyster shell in Oscal. I now take calcium citrate in Citracal and have had NO tail bone pain since the switch. My pain had been daily for months before the switch.

Helpful Regards,

Susan Seago

Updated 2002-08-25




Had surgery - tailbone was barely attached

Tamela - XPaNdOrAzx@aol.com

I injured my tailbone during childbirth a year and a half ago, due to the ignorance of my doctor. I suffered over a year with severe pain , which was very life altering. You just don't know true pain until you have to rock your baby to sleep everyday with a broken tailbone.

I was finally able to find a doctor, thanks to this web site. I had the surgery done and everyone was as nice as they could be. The doctor said that my tailbone was barely attached, and that I should definitely start to feel better.

Well, 7 weeks after surgery the pain from the surgery has gone but my tailbone (or lack there of) actually hurts worse than before the surgery. I can barely do anything now. I am going back to my doctor to see what has happened, and I have to say I am nervous. I have had so many bad experiences with doctors and their arrogant attitudes, that I'm afraid that I'll make this long trip, and all he'll say is keep sitting on your doughnut or something stupid like that.

Oh well, all I can do is wish for the best.

Tamela

Updated  2002-07-14




Dislocated coccyx removed

Tandra

Hi, my name is Tandra and I am a 35 year female. I fell down 4 steps last August (2001) and suffered a reasonable amount of pain from that time on both when sitting and in particular when going to stand. I went to my local GP and was told that I probably fractured it and to wait a couple of months as it takes that long too start to feel better. No X ray done at this stage.

At Christmas (2001) I again fell down steps (yes I am probably clumsy) and now avoid steps like the plague! This time the pain was considerable and constant. After two weeks the only time the pain was not present was when standing or lying on my side. In particular driving anywhere for more than 10 minutes was just about impossible and when ventured I could first of all hardly stand up out of the car and once standing experienced difficult walking. Laying down caused pain and I could not lean back at all in any chair. Standing up after sitting caused the most pain.

I went to the doctor after the 2 weeks and was sent for X-rays which confirmed a "Posterior Dislocation" of the last 2 bones of my coccyx. I was referred to an Orthopedic Surgeon who first off performed a 'manipulation' and also an injection of Steroids and long acting anesthetic. This was done in March 2002 and I would have to say this did very little to alleviate my symptoms.

In July 2002 I went back to the surgeon to discuss the next step of removal of the 2 dislocated bones. He asked me to think about it as he was not keen to perform the operation and to also look on the internet. Which I did including this site. Whilst I would have to say I was very nervous to go ahead I went back in August and said Yes let's go.

The Operation was completed on September 5 2002. A 1 hour op to remove the dislocated bones so I still have some tailbone left. I was in hospital for 2 days and took another week to recover. The second week after the operation recovery was very rapid and I was sitting and walking without a problem. Keeping the wound clean was vital to avoid infection and I did request from my surgeon to cut as high as he could. I had no infection and the wound healed very well. It does feel a bit different for a while but the bonus is that I can sit and lean back, lie down with no pain and in fact drove for 2 hours just 2 weeks after the operation with NO PAIN AT ALL. Therefore I would have to say the operation was a success for me. I think that still having some tailbone might be some of the reason that I have recovered so well, but all in all the results are fantastic.

Regards/Tandra

Updated 2002-10-06




I'm ready to get rid of it!!!!!!!!!

Linda Terry

Original posting 2001-12-09:

I'm writing to let you know that I am scheduled to talk to my Doctor December 14 on coccygectomy. I too have been suffering for 5 years and have been down the road with all procedures. I think I am a good candidate for this surgery, God knows it could not get any worse. This Doctor has taken out about 20 in his years of practice.

I thank all of you for all the testimonies it will help me sort through it. Just to read some of the same things that I am going through helps a lot. Thanks God for this web-site.

Update 2002-09-29:

I had surgery on 19 June 2002, and thought I'd give you my update. My doctor is Dr. Edmond Dyas in Mobile, Alabama, a great doctor (note - died in 2011). He did a complete removal of my t-bone, it was curved down and sharp point on one side, he said it was one of the worst he had seen.

I stayed in hospital 1 day and had stitches out in 5 days. I went back to work 2 months later, but still have soreness when I sit too long. He reassures me that in time it will get better. I am glad I had this done, just wish I would of found him sooner. For anyone thinking of having this, you have to be patient because it does take time to heal those delicate tissues.

Update 2003-01-19:

Just wanted to let you know I'm coming up on 7 months since surgery, each day I'm doing better. Am I glad I had the surgery? you bet, wish it could of been done years ago.

I still have soreness in that area but hope in time that will heal. My sacrum has been flaring up but my PT takes care of that. I found out last month I bone spurs in both feet, so I've been under Dr care and Physical Therapy, needless to say the feet hurt so bad I forget about bottom pain.

Take care, Linda




Looking for a good doc in Los Angeles-South Bay area

Tina Nakai - minalouisa@yahoo.com

Dear Jon,

First of all, I would like to thank you for creating this website. I gave birth to my son 16 months ago, a great and miraculous event that unfortunately left me with a "bent" tailbone. I've had cortisone injections, directly into my tailbone, as well as several into my lower spine. I've tried anti-inflammatories and sit on a donut pillow, but nothing works. In fact, my pain only seems to be increasing and radiating a bit on the left of my rear and into my hamstring.

Anyway, I was reading the personal experiences on your site because I've been thinking about removing my coccyx altogether, something I'd been advised against by a rheumatologist. However, a lot of the results looked promising. I'm now about to start looking for a doctor with experience in this area in Southern California, preferably the "South Bay" area. I wanted to know if anyone out there could refer someone.

All I know is that I want to be able to sit through a movie someday and do some of the activities I used to without worrying that I'll injure myself even more. OK, I'd just be happy if I could sit without pain.

Thanks again and I hope to hear from anyone soon...

Tina Nakai

Updated 2002-03-10




Read this book

Todd

Hi Jon,

I have been in and out of your fantastic website for two years now. I had coccydynia during this time. It seems to me that everyone is experiencing the same pain, symptoms, etc.

My coccydynia is gone. After trying all physical therapy treatments, I ran into something different. I bought a book titled "Mind over back pain" by John Sarno. I read it, listened to it, believed it and beat coccydynia.

I have many more details. If anyone has questions I would be happy to answer them. I know how desperate and debilitating this problem is. Trust me. I was there. The bottom line: There is no structural abnormality of the coccyx. Yet, we feel pain. Why?

Read this book. I was skeptical too. Read this book. I have my life back.

Read this book. Read this book.

Jon, thank you for helping me to cope for the last two years.

Todd

Note from Jon - see also the posting:

Frederick Darrah - It's TENSION Folks

Updated 2002-01-13




Coccydynia with leg pain and weakness

Tonya Owen - towen@glasgow-ky.com

I, too have suffered from tailbone pain from no known source since November 2000. I have had two episodes of severe low back spasms, severe enough to take me off work since February 25th. I am an emergency center RN; we are well known for not being able to be still. This problem has totally disrupted my life. I don't do well being bored!! Also, I'm only 29 years old. My husband is going back to school, so we had anticipated starting a family within the next year or two. Just thinking about how painful that will be with this other problem is very scary.

Nurses are also known for not taking care of their own health, so I put off going to the doctor until January. She was puzzled, so she prescribed a steroid injection and some muscle relaxers (that was during the first spasmodic episode). After two weeks, the spasms were improved, but the coccyx pain continued. I, too, ordered the coccyx cushion, but my pain finally got so bad that it also hurt to stand or lie down. At that time, my doctor prescribed physical therapy. They have a wonderful new procedure called iontophoresis; based on electric charges of medication, this machine sort of electrically drives Decadron into my coccyx. It does offer some improvement. The pain is much more localized after treatment. However, if I miss therapy for more than a day or two, the pain gets bad again.

At the end of February, I was working one day and developed SEVERE muscle spasms in my mid- to low back. The doctor changed my muscle relaxer. Physical therapy continued with EMS, heat/ultrasound, and iontophoresis. It took two weeks for the initial spasm to relax. They put me on family medical leave at work. I had an MRI that showed mild scoliosis with the spine deviated to the left, and bulging discs at L4-5 and L5-S1, left significantly greater than right. I also walk two miles at least every other day, but recently I have developed left leg pain, weakness, and tingling of the left hip, leg and foot with my walks. It feels as though I have to make a conscious effort to put my left foot in the right place, otherwise it deviates to the left. This is especially noticeable on the treadmill. If I don't pay attention, I step off the left side of the belt. The physical therapist told me my left leg is weaker than when I started. I see a neurosurgeon Wednesday, March 27; however, my family doc and the docs I work with say they do not feel he will recommend surgery at this point. They say he will continue physical therapy, which feels good at the time, but doesn't seem to be returning me to my normal level of functioning.

I am so scared and depressed. A friend who works at the same hospital as me had a baby in November. She had a terrible pregnancy. She was in the hospital most of the time, and even had to have her gall bladder removed during pregnancy. By the time she was ready to come back to work, they told her that since she had exceeded her 12 weeks of family medical leave allowed by law, she had been terminated and was welcome to reapply. So she and her husband have a new baby, one income, and guess what? My hospital turned them over to a collection agency because they can't afford to pay what the hospital wants per month because THEY FIRED HER FOR BEING A PATIENT IN THEIR HOSPITAL!!!!! They are talking to a lawyer, but I'm still scared to death the same thing will happen to me if I don't get back soon. I don't feel like I'm able to return, but I feel I have no choice. Who else is going to hire a nurse with bulging discs? I did not file workers' comp even though I had a back injury from a patient in 2000. I was afraid they would try to find a way to get rid of me!!!

I guess I should wrap this up-- in case you didn't know, nurses are also well known for running their mouths all the time (or fingers in this case).

Tonya Owen

Glasgow, Kentucky

Updated 2002-07-21




My history of butt pain and surgery

Trudy - king.ashhurst@clear.net.nz

See also:   What is coccydynia?   Investigation and diagnosis   Treatment   Coping with coccyx pain   Find a doctor or specialist

I have just turned 40 (5th June 2002) - had a great party - which I shared with my husband of 15 years (we are 3 weeks apart in age). We have 2 children; Samantha aged 11 and Joshua aged 14. I live in the North Island of New Zealand. I work as a school secretary so have a very busy work day. I am also very involved in many community groups and school groups. Some in particular are the local Pool Society (we built a new community pool) and I have just taken over the chairpersonship, and I am a member of the school's "Health Promoting Schools" committee. I am also fully involved in my union NZEI. Life is full and exciting and busy.

BUTT - I have a broken / displaced coccyx. I hurt it six years ago (January 1996) whilst helping my husband remove a tree stump. I held the rope while he levered the stump out of the ground - it moved and so did I!!!! Backwards and directly onto my bum. The pain was excruciating and went all the way up to my neck. I had other problems then too ... OOS of the right hand, neck and back problems and was in a bad phase with coping (or not as the case was), along with a right foot/ankle multiple bone fracture in the healing phase causing lingering problems. Not a good time to break my coccyx!

So - that was the start of everything. Since then I have always had to be careful about what I sat on, how long I sat and what position I sat in. It has been frustrating butt liveable and not particularly painful. I have, however, always noticed that something was 'not quite right'. Other problems settled with time with occasional recurrences - especially the neck. Now six years later, after a number of falls, I can't function at 100% and sitting and standing are very painful - especially sitting to standing. I can even feel the tailbone tip move when I walk and bend.

My tailbone looks like a capital L, at an acute angle - and moves sideways when I sit. Not comfortable. My GP tells me that every time I sit on it, it breaks again and that is why I am now having constant pain and trouble. He described it much like trying to rest your whole body weight on the tip of your little finger - something has to give!!!!

The last resort treatment was the cortisone injections, which were not only uncomfortable but VERY painful and did not work. I am not on any pain medication butt when I do then I take paradex which is slightly stronger than pandol but seems to help dull the pain. I hate taking drugs, especially long term, so only take them when I absolutely have to.

I have done my research and know what is what and when my surgeon gave me the options I knew what he was talking about. He gave me the final choice and I have chosen to have the op as at this stage anything is better than not being able to sit and being scared to sit and then even scareder to stand. It is also not a good and comforting look at work when I have to slide out of my chair on the way to sick bay to tend to an injured or sick child!!!! It does not instil confidence. I also hate walking as though I have an orange permanently wedged between my cheeks!

I must admit, though, that I am somewhat worried about the recovery time having read some of the stories from those of you who have undergone the surgery in some form or other. My surgeon indicated I should be back at work in 2 weeks post op butt I doubt that. Time will tell though and I can't say that I will be chomping at the bit to get back so hope that my employer sees the sense in ensuring that someone is properly trained to do my job in my absence or if I ever leave. Plus, as this is an injury related to an accident it is covered by ACC (Accident Compensation Corporation) and they pay 80% of my pay whilst off work (after the first week). So, I can't run out of sick leave from work and still have income, albeit reduced.

I am a determined and stubborn person and won't let pain stop me pursuing my interests etc. It is good to read about your stories because this sort of condition is not common, and certainly not talked about, and it can be very isolating. Many people think I am joking when I tell them about it and think I am, as we say over here, "pulling the wool".

I am currently waiting for the funding to come through and when it does the surgeon will book my surgery into his schedule. It will take place at a private hospital so it will be a comfortable stay - not squeezed into the public hospital!!

UPDATE I had my operation on 4th November 2002. It took place, as expected, in a private hospital. I was admitted at 7:00 am, had pre-op meds at 8:30 am and wheeled into surgery at around 11:30 am. I do not remember much from that day, suffice to say I could tell that an operation had taken place but not sure what had gone on.

DAY 2 - Tuesday I awoke the second morning fuzzy headed butt knowing that I had undergone surgery and that I was in hospital. I had a pain pump dispensing morphine as I needed it. I don't remember getting up at all that day and I slept quite a lot on and off. The surgeon visited and told me what he had done, but I took very little in.

DAY 3 - Wednesday I am more awake today and able to take everything in that is going on. I struggle with my drip whilst trying to have a shower! It is better than having a bed bath - eeeekkk!!!!. Today I go home and am discharged just before lunchtime. My husband comes to pick me up and I have to drape myself across the back seat so that I don't hurt my butt on the journey of 10-15 minutes. Once home I crawl into bed and fall asleep. My dog, Max, perches up on the bed with me and won't leave my side. The family leaves me alone and I sleep more than I am awake. I have bottled water by my bed and the TV on the tallboy to watch when I can. I do not feel very well and just try to stay as quiet as I can. I posted to T-Bones the following: The surgeon took the whole coccyx. he commented that it was a mess and he had to spend time getting it out. the incision is, I am told, about 3 cm long just offside to the mid line between my butt cheeks. According to my hubby the wound is barely noticeable. I have been given IV antibiotics as a precaution and now just prescribed paracetamol and an anti-inflammatory. No pain to speak of but cant lie on my back and hips getting sore.

DAY 4 - Thursday This day I am still much the same; sleeping, watching some TV, having a couple of visitors. But I am feeling very nauseous and dizzy. I do not feel like eating but nibble at food left for me by my husband. I have not yet had a bowel movement and can't be bothered getting up to have a shower. The wound appears to be fine; in fact hubby says you can hardly even tell where the operation site was. The surgeon has used an inside running, dissolving stitch. I have no real pain but do take the anti-inflammatory meds prescribed call Tramadal-Ratard along with paracetamol. I posted to T-Bones the following: Lying in bed has become unbearable. I am sure many of you know what I am talking about with the painful hips. My whole lower body feels heavy and sore. It hurts to turn in bed. I have just taken some med to help calm the pain. I hope that in a week's time I will be feeling much better. I am pleased to have had to op and the doctor was clear when he said it was good to have it removed. I am glad I wasn't awake when they placed me in the surgery cos I was flung over 4 large pillows - no doubt to expose the coccyx area well. The hospital was nice and comfortable and the meals lovely although I didn't feel much like eating - and still don't. I just want to drink.

DAY 5 - Friday I feel much worse today. I am very dizzy and nauseous and constipated. It is excruciating. I have opened my wound by the pushing created by the need to empty my bowels but that only makes things 1000 times worse. ARRRRGGGGHHHH! I perserve but am just so miserable. Finally, hubby manages to convince me to call the surgeon. I talk to his nurse and she says to stop the anti-inflammatory med because I am having an extreme allergic reaction to it. Stopping it means I won't have any anti-inflammatory meds until I see my surgeon on Tuesday of Week Two. Damn. I go to sleep. Hubby has driven into town and bought me some Metamucil to help soften the constipation. Oh it is agony. I posted to T-Bones the following: Today (and yesterday) I have been feeling very nauseous and dizzy (upon standing) possibly related to the low blood pressure monitored whilst in hospital. I am severely constipated and have taken a triple dose of metamucil to help soften things. But oh the pain. I can sit without the pain of sitting to standing that I had before the op but to sit too long is not a good idea. I prefer to lie down and then the nausea and dizziness subsides and butt pain is not too bad. I have had to take my anti-inflammatory tabs today due to the pain (Tramal Retard 100 mg SR). It seems to have eased my constipation and my butt pain but not the other. I have not slept properly in days and my whole body aches - especially my hips and top of my arms. I am still depressed but that should pass once I am feeling better. I am okay walking around but not too much. I have not eaten properly in days as eating also makes my nauseous but I am keeping my fluids up. I feel bloated and I think that my face is awfully bloated looking too. I have a short temper and can't stand too many people around at once - not too much of a problem as I haven't had that many visitors. My dog, Max - a bishon frieze - won't let me out of his sight and when he can get away with it sleeps next to me on my bed. He knows that I am not myself. He is just lovely.

DAY 6 - Saturday I posted to T-Bones the following: Today I am feeling really down. My severe constipation is no better and has caused a rupture of the op site - not too big but enough for my hubby to notice and there is some seepage so will have to be extra careful. The bowel motion I had this morning was very painful and there was some blood in it. A bit of a worry really. The ACC visitor came over this morning. She went over how I was feeling and what I was experiencing. She was rather horrified that I haven't been prescribed an alternative to the Tremadal and am just on paracetamol. She seems to understand my position well. She is organising home help for me from next week as hubby is back to work on Monday. That will help.

DAY 7 - Sunday I posted in T-Bones the following: Today has been somewhat better for me. I still get very tired and sleep a lot during the day. I can sit but only if I sit forward (like I used to pre-op) and it hurts to stand up (but not the same sort of pain I had before the op). I have pain when I walk, sit, lie etc etc so I am not yet free of that. The metamucil has started to do its job and my severe constipation has eased. I have started to eat again. But I feel bloated and nauseous after eating. As I write this I am feeling hot and flushed so hope that is not an early sign of an infection looming. Tomorrow will be my first day at home alone as hubby is back to work tomorrow. It will be interesting to see how I do. The paracetamol keeps the worst of the pain at bay but not all of it, what pain I do have is sharp and scary.

ONE WEEK POST-OP - Monday I posted to T-Bones the following: Today it is one week post-op. The PITA has increased and the 4 hourly paracetamol doesn't even touch the pain now. At least up until now it was taking the edge off of it. My bowels have decided to behave - more or less - and I have no worries in that area now. I go to the surgeon tomorrow so will be looking for some better and more effective pain relief and since I am more with it I will ask about possible side effects so I don't get in the same situation as last week. Sleeping during the day has equalised and I am now not so tired and sleepy but night time sleeping is not wonderful as I am in a lot of pain and can't find a comfortable position. I tend to wake every couple of hours. It was my first day at home by myself today and it was just so boring. Even though I wasn't interacting with the family over the past few days at least I could hear them - today I just had my dog for company (he follows me everywhere and sleeps on my bed with me until it is time for him to go to his kennel at night). I had a bedside meeting with a woman today to discuss the management of the local pool and that was a welcome diversion for an hour. I can't even imagine returning to work next week as my doctor wants me to. I will insist on a further month tomorrow when I see him. I am sure that this will give me the time I need. If I return to work on 16th December then it will be only 3 1/2 days until the end of the school year and I have 5 weeks holiday so that will make things much easier for me to contemplate.

Day 9 - Tuesday I posted to T-bones the following: Well, after meeting with the surgeon today I am feeling so much better about everything. I discussed the reaction I had to the meds last week and he apologised saying I was unfortunate to experience such an adverse reaction. Today he has prescribed for me VIOXX which I had whilst in hospital and didn't appear to react to so should be able to carry on with better pain management and perhaps sleep better. He has given me until 16th December off work and that suits me fine. I will return to work, whether I am totally ready or not, on 17th December so that I don't stuff up my pay over the summer holidays (if I don't return to work by then I won't get paid at all until February 2003 and I can't afford that :-( ). Anyhow, he is pleased with the wound and today cut the knots off the end of the suture (a running, dissolvable under the skin suture) and it should disappear completely in a short time. The wound had closed back up and was looking healthy (not that I could see it of course). He told me to continue doing what I have been doing, I.e. resting on my side and going for walks as can be tolerated. If I have any problems I can phone him or his nurse. Wow, it was such a weight off my mind today. I am pleased that things are going as he had expected and that I am not pushed to return to work too soon. I am also now not falling asleep at the drop of a hat anymore. He told me that he had doped me up with not only pain killers, anti inflams etc but of course opiates and that was why I was so sleepy (duh! I should have known that). It now feels like a curtain has risen and I can see clearly. I can get through the day without having several naps of a couple of hours each. But, I also know that I can't do too much as even with showering and getting dressed today to get to this appointment I was totally stuffed. It took me an hour and a half to get ready - and I didn't even put makeup on!!! LOL. My concentration span is not great and I am constantly up and down trying to orientate myself - but that is not a big burden. Home help kicks in tomorrow so I have someone coming in an hour each day (Monday to Friday) to do housework and preparing the evening meal and once a week I get the home help back for whatever extra is needed for an hour and a half. Over the next four weeks that amount of time will decrease but that is okay as by then I should be able to manage the basic household routine without getting too tired.

DAY 11 - Thursday Hi everyone, today has been a really bad day for me. I spent an extra long time on the computer last night and woke this morning with severe pain - almost like I had broken some ribs. I have been feeling really horrible all day and forced myself to get up and have a shower about an hour ago. Now I feel more alive. I spent all morning sleeping fitfully and this afternoon just trying to get comfortable in bed. My wound is feeling strange too - almost a pulling sensation with some numbness but it is not painful, per se. That is all from me for now - I have to cut down my computer time for the time being.

DAY 13 - Saturday I have just come home from my first proper walk outside since my op. It was slow, and painful, but I did it. It was nice to see the kids from school greet me as I walked up the street, "Hi Mrs King, how are you doing?", etc. I will try and do a walk everyday as this walk made me realise how lazy my muscles have gotten from lying around so much. I did find out that walking up and down even small inclines hurt like hell so the walking will be confined to even stretches of pathway. I can't even walk up steps as this creates a pulling sensation on my butt and is quite unpleasant.

2 WEEK POST-OP UPDATE HI all, here I am 2 weeks post-op update. I feel so much better than this time last week, even heaps better than Friday of last week. I still can't sit normally on a chair but I can sit for longer on my computer chair - sitting forward and not putting pressure on my butt. It has meant that I can go into my favourite site (www.tradme.co.nz) and into the cafe for a chat with my friends there. I have had some wonderful chats with people from all over NZ, Australia and some world-wide.

I have been taking it easy in and around home and went for another small walk yesterday. Even though the weather was very winter-like it was refreshing to get out of the house for a while! Needless to say that I am bored silly (as I have such a busy work and community life) that I am finding it hard being more or less confined to home. I still spend the greater part of the day lying in my bed and hubby bought me a tri-pillow last week and that helps with the other aches and pains I get from lying on my side. I just wish I could sit up in bed instead of lying on my side all of the time. I have another 4 weeks before I go back to work so will slowly build up my strength over this time.

3 WEEK POST-OP UPDATE Hi all, well here I am at 3 weeks post op and I can feel an improvement every day. I even went into town Saturday (to watch Christmas Parade) and Sunday (to do grocery shopping) but of course lying across back seat of car - not the most comfortable lol. I cleaned the fridge out today and have decided to force myself to get dressed everyday and try and be a bit more active. Bending etc is still painful and proper sitting is out of the question. I have 3 more weeks before I go back to work so am looking forward to further improvement. I experience a pulling sensation when moving and sharp pain when I have overdone it. Even though I look 'normal' people now expect me to do all the usual things that I have done in the past and don't understand that I can't do it all yet. This coming weekend is the weekend I put together the local paper so it will be interesting to see how I cope with that perched on the edge of the chair.

I still retreat to my bed straight after tea at night as it is the only place where I am most comfortable. I tried to go without the Vioxx the other day cos I didn't think the pain was too bad and very copable BUTT I found out differently - now I make sure I take it even though it doesn't last the full 24 hours. Damn. This weekend is also our local (and very first ever) Christmas parade and we will be in it for our local paper so will be spending some time this week painting the banner. I have to borrow an Overhead Projector from school to do this. I will also be taking digicam photos for the paper so it will be busy and no doubt I will be quite exhausted but it will be something entirely different to do.

4 1/2 WEEKS POST-OP UPDATE I am now 4 1/2 weeks post-op. The first week was fairly horrendous. I spent 2 1/2 days in hospital and then home where I slept for most of the next five days. Unfortunately I had a severe allergic reaction to the anti-infamms prescribed and so had to stop them and had 4 days or so without any pain meds until my postop appointment with the surgeon. Yeouch!! I was then prescribed Vioxx which although helps does not last a full 24 hours and as I only have enough for one month I cannot increase the dosage so persevere. This week has been a much better week for me. I am able to sit for periods of time in the leaning forward on the back of the legs position but normal sitting is definitely out. I find that lying on my side in bed is now becoming painful as it appears to cause pressure on the now non-existent tailbone area but I can lie for short periods of time on my back. Being on my feet all day is tiring also. Nowhere is comfortable but at least I can get up and about and do things instead of staring at the four walls in my bedroom. Today, after having 5 full-on days of doing stuff, I was just mentally and physically exhausted and had to spend the day in bed. I got very little sleep but did rest and managed to read some of a book too. That is something I have noticed is that since my op my concentration span has been not there at all but is now slowly making an appearance and I can concentrate on watching TV or reading a chapter at a time of my book (Faye Kellerman's newest novel). I still experience pressure when bending forwards and I try not to wear trousers etc as that creates pressure when bending or sitting and even when lying down. It is not really pain but is very uncomfortable. If I have sat for too long or done too much I do get shooting pains from my tail up my spine and it can be rather immobilising. However, those episodes are becoming much fewer but do serve to remind me of my current limitations. I am still convinced that this operation was the best thing I could have done for myself and the way my healing is going I am sure that it will be a 95-100% success so long as this 'pressure' feeling goes away. I am expecting to return to work on 16th December and as it is only 3 1/2 days until the end of the school year should not be too much of a burden. The Principal said she was keeping the 2 people employed to fill in for me on upon my return so that I didn't over do things. That was just so nice of her. I do get very tired and am inclined to ignore what my body is saying but I have to remember that I am still healing and to take things easy!

5 WEEKS POST-OP UPDATE I had my final visit with my surgeon this afternoon and he is very pleased with my result. He explained that during the op he removed as much of the inflamed tissue as he could and that the rest will clear up over the next few months. He said that within about 2 months or so I should be almost back to my old self (without the PITA, of course) and that I should be able to do all the activities I used to do without getting as tired as I still do now. I told him that it was a big change from before the op and that I was really pleased with how it was all going. I am back to work on Monday for the final 3 1/2 days of the school year and then have 5 weeks holiday and begin my new working year on 21st January.

6 WEEK POST-OP UPDATE To all, my first day back at work was tiring, to say the least, but I got through and left early at 2 pm. I experienced some shooting pains in my sacral area but not enough to floor me! Today was better and managed to stay until my normal finish time of 3:15 pm but I am oh so tired of standing all day! However, it is only 1 1/2 more days then the summer holidays start and I don't have to worry about work until 22nd January.

From Trudy in New Zealand

Updated 2002-12-22




Dislocated coccyx

Vicky Harrison - OliversMum@hotmail.com

I suffered a dislocated coccyx during labour in April 2000. I was referred to an orthopaedic specialist but unfortunately the referral letter went missing (NHS!!) and I wasn't seen until September 2000. The doctor confirmed that the coccyx was severly dislocated and I had a manipulation with injections in the November.

Since then I have suffered constantly with the pain and the only thing they can offer is a coccygectomy which they really do not recommend if I can manage the pain myself. I wondered whether the 5 month delay in my condition being diagnosed may have worsened my problem (which I think is true) and if there are any other procedures other than removal of my coccyx that you may have come across.

It is really helpful to hear other peoples accounts of their problems as it is reassuring to know that I am not the only one suffering.

Many thanks

Vicky Harrison

Leeds, UK.

Updated 2002-02-03




Just started having pain

Wanda - wanda@carterkingco.com

In the past week I have had some real pain at my tailbone. It hurts when I get up from sitting down. I have no pain when I stand or lay down. I have not seen a doctor, I guess I'm waiting to see if I just bruised it. I did have a hard fall about three weeks ago, but I fell forward (broke my hand) and I don't think that would affect my tailbone. Would it?

Anyway, it's very interesting reading these experiences.

Updated  2002-07-21




Prolotherapy or corticosteroids

Wendy

I wanted to tell you that I've gone through prolotherapy. About a year and a half ago I went to my general practitioner and she referred me to a "pain management" doctor. He diagnosed me as having "ligament laxity" and suggested I go through the series of prolotherapy. I had 4 shots on either side of my lower spine for the full series - The pain of the injections was bad enough, then the pain of the injuries to the ligaments. Then the fact that it did not relieve any pain. I went through the entire series again, after taking time off to see if the treatment worked, with a stronger dosage. Again, no improvement. In addition, the doctor would not listen to me when I asked questions, and I really think that he didn't believe me when I told him that I was getting no relief. After finishing the second round, I never went back. At any rate, I was completely discouraged.

It wasn't until this past spring that I gathered the courage to go to my G.P. again, and she recommended an orthopedic surgeon group. There I found a wonderful pain management specialist, who diagnosed the coccydynia within minutes of my telling her my symptoms and stories. She viewed my previous x-rays and gave me a corticosteroid injection that really helped for about 3 months. I went to physical therapy for 2 sessions, but was not convinced that the physical therapist had any knowledge of my problem, and was simply giving me the basic, run-of-the-mill exercises. I have just had my 3rd shot since last January, and am waiting for it "to kick in".

So you can see, that I am very excited to have read your site, as my story now does not seem so bizarre! I really AM normal, and not the only crazy one who has ever had these weird symptoms. I have never sustained any injuries, but am about 30 pounds overweight. I'm in the middle of weight loss right now, as I am convinced that my symptoms will lessen when I weigh less. Another interesting note: I was taking Spinning classes at my gym (biking) when my symptoms first occurred. Maybe that has something to do with it...

Updated 2002-01-27

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