Personal experiences of coccyx pain in 2001

How to find experiences like your own

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.

Personal stories can be very helpful, but they may not give a true picture of the success rate of a treatment. See the Treatment section for more accurate information on success rates.

You can add your own story to this page, to ask for advice or to tell others what helped you. Or you could join a support group.

Stacie - Slipped on bus steps - now has plantar fasciitis as well as coccyx pain

Anonymous - I have no idea how my tail bone was broken

Cindy - Fractured coccyx falling on the ice

Lisa - No treatment 6 months after childbirth

Anita Ogletree - THE PAIN!!!

Renee - I have had a tender coccyx all my life

Amy - The doctor wants me to see a psychologist

Candy - Coccyx removed 7 years ago - no pain now

Pam - Any suitable surgeons in Florida?

Beth - Tailbone removal

Len - Physicians in Western Canada?

Sue - Need help

Jeff - Sometimes... fine / sometimes... excruciating

Kim - Surgery success in Arlington, Texas

Tanya - Some great news for sore butts!!!!

Katrina - Update - 12 years old and have had a pain in the Butt for 7 months

Al - Update - Flat stool

Anonymous - Car accident to blame?

Susan - Started with DNC

Linda - CRACK! went my tailbone!

Jon Miles - Update - Cycling accident in 1993. Coccyx removed 1999

Laura - Tailbone pain - no cause

Alice - Young sufferers

Anonymous - Pain in coccyx with no injury

Nancy - Tried everything but still in pain

Kellie - Pain without injury

Sue Rauschenfels - Gel cushion?

Diane Roberts - Coccygectomy saved my life!

Jeri - Need a doc in Seattle, WA area

Cori - update - I felt a pop coming from my tailbone area...

Helen - Slipped Disc ? Don't think so!

Louise - Bowen therapy gave relief

Sara - Slipped downstairs - help!

Julie - After trying many treatments, an unusual manual therapy cured the pain

Debi - Success in Lexington, SC

Lavelle McCallister - Daughter had years of pain - any experienced doctors in Florida?

Jane - This takes some explaining

Anonymous - Update - Pain, pain, go away- don't come again another day!

Anonymous - Update - Coccyx pain for over a year, injections didn't help. Also get pain on intercourse, abdominal pain

Rachel Webb - Long, sharply angled coccyx

Barb French - I'm looking for help

Joanne - Doctor said operation could cause loss of use of bowel and womb

Jenny - Pain caused by childbirth with short labor?

Deidre - Fractured coccyx during childbirth

Phillip - Hello and thank God I happened upon this site

Anonymous - Surgery Update - 11 weeks post-op

Barb - Can't sit, husband getting mad

Anonymous - Vioxx has helped, but surgery is an option

Anonymous - Pain went away

Kay - I Need Some Relief!!!!

Kerri Johnson - Tailbone pain after childbirth

Anonymous - Pain came on slowly over 4 years

Laura - Need advice on my coccyx pain

Jim - Everyday is worse than the one before...

Jon Exley - Self inflicted bruised coccyx

Jane - Coccyx wags backwards and forwards

Wendy - Headaches can also be attributed to coccyx - cured by removing coccyx

Jennifer - Pain turned out to be caused by a pilonidal cyst

Tony - Update - I feel like I've had my butt kicked in Texas

Shani - It hurts when I sit down and when I get up

Pamela - I had the op

Rory Greenwell - update - Severe pain for over 2 years. Now had coccyx removed

Irene - Need help in NY or NJ for PT and Orthopedist

Anonymous - I am losing all faith in everything

Ron - Prolotherapy as a treatment for coccydynia

Anonymous - I'm so sick of doctors telling me there is nothing they can do

CS - What a relief to know that I'm not losing my mind

Anonymous - Had surgery, 7 months pregnant and can't stand the pain

Jo - Burning sensation in the tail bone area

Rusty - Tailbone pain with constipation

Anonymous - Could this be coccygodynia?

Ann - A comfortable chair

Amy - Protruding tailbone

Diane Sullivan - I am not crazy. I want the pain to stop

Lisa - Update - Rollerblading fall

Tricia - Car accident

Melanie - My pain from a broken tailbone is excruciating

Kevin - Don't know how it happened, it just showed up

Anonymous - Swollen spot on lower back

Wendy - Butt pain

Dan - Killing nerves

Danielle - Fell down stairs - worst pain that I have ever felt in my life

Cath - How did this happen?

Stacie Pouh - Pain free at last

Mary W - Pain relief

Kim and Alan - Kim is facing surgery

Liz - I can't sit down because once I do I can't get back up again

Anonymous - Fanny hurts to sit/Feet hurt to stand




Flat stool

Al

I have noticed that my stool comes out flat when I have a bowel movement. This developed around the same time that I developed arthritis of the coccyx. Has anyone else had this problem?

Reply:

I too, like Al, have experienced flat stool since I developed arthritis in my tail bone.

If anyone has answers to why this would be, I'd love to find out.

Tom

Updated 2001-12-09




Young sufferers

Alice - akwoolley@aol.com

Hello, this is an 11 year old girl speaking/writing. I am e-mailing you because I can't find anything about children suffering from coccydynia. I was wondering if you knew of any product which is more discreet, as all of my friends would laugh at me if I carried a 2ft long cushion around with me to all of my classes. It was bad enough in primary school (I have been suffering for 3 years) when I couldn't bear the pain any longer and took in a cushion.I don't mind if you show this e-mail.

Alice

Reply from Jon Miles:

Sorry to hear that you have been stuck with this problem for so long. It's not only children who don't like carrying cushions around because of what people say - I didn't carry one for a long time, for the same reason. But I know some children can be a lot worse than adults for laughing at you. It would be best if you could get a cushion made that was just big enough for you - maybe half the size of the commercial cushions. You can buy furniture foam (or your parents can) and cut out a piece at the back under the coccyx, and cover it with material.

By the way, did you see the letter from Katrina, 12 years old?

Updated 2001-11-18




Protruding tailbone

Amy - sad@wmis.net

Hi ! I am a 31 active female who has a tailbone/sacrum problem and was wondering if anyone could help me. I was born with a "funny" tailbone. It protrudes out my back and can be felt through my clothing. When I sit , it hurts because of the pressure on that bone.

I went to an orthopedic surgeon who looked at my x-rays and told me that all he could do for me was send me to the U of M to a "sitting clinic" where they could make me pillows to carry along with me so I could sit and be pain free. I had tears in my eyes ! I was soooo disappointed! He said that if that wasn't what I wanted to hear , maybe I should go see a neuro surgeon, but that he would more than likely tell me the same thing.

I read alot of the postings, and everyone seems to have had injuries where mine is a birth defect.....any advice?

Thanks Amy

Updated 2001-07-01




The doctor wants me to see a psychologist

Amy - amyb22@hotmail.com

I have had tailbone pain for the past 5 years, I'm 28 years old.

I have been to many different doctors, one said that I had early signs of osteoarthritis. The last one I went to told me that I had what is called a pain in my coccyx. Its a long weird name. Anyway, he gave me celebrex and basically said that I need to see a psychologist. I am not depressed, but somehow he seems to think that caused this is what he said, it really makes no sense to me. Celebrex does NOTHING at all for me, and is very expensive.

I don't have medical insurance. I am in sooo much pain, that gets worse as the day gets longer. I had never even heard of a pain in a coccyx? Anyone that wants to write me, please do so..

Updated 2001-11-25




THE PAIN!!!

Anita Ogletree chaniah@bellsouth.net

I am not certain, but I think all of this started about 5 or 6 years ago when doctors found fibroids on my uterus. It took me a long time to change doctors after they had done tests and had decided that the pain I was having in my left leg and the bones just between the thighs on either side of the groin was not because of the fibroids. The pain and discomfort had become so intense that I found another doctor who did a test which helped him to see that not only did I have fibroids that were growing but I also had endometriosis. This was spreading to all the major reproductive organs and he suggested that I have a hysterectomy.

After some consideration and prayer, I decided to have it hoping that the pain would go away. For a short while, the pain in my groin and left leg subsided. Then I started walking for exercise. Oh how fun it was - in the beginning. I was determined to keep trying, but my feet and lower back wouldn't let me.

My feet would get numb after about 20 minutes into the exercise. I could see an improvement in my weight and energy, but I had to stop the walking and get some help. I went to doctors and they did tests and said all the found was some osteoarthritis on my spine. They prescribed different kinds of medication. I took some and stopped after hearing that all this medication was doing was messing up my kidneys if I continued to take them over a long period of time. Meanwhile, the pain gets worse and then it subsides.

This year, after doing sedentary work during this time, I began to have pain in my left leg, which extended to my lower back. I thought that I would try a chiropractor as suggested by a co-worker. Two of them tried and tired, and as you know, this only helped temporarily. The pain kept getting worse until it started to affect me when sitting down. I changed doctors again, had X-rays and A MRI done, which showed nothing. I went to a Physical Therapist, who tired but couldn't help. I was in more pain after the stretching and all. I have had to go on a medical leave from work because I cannot sit and we tried different chairs and pillows and sitting positions. The pain now is a 10. The Therapist did mention the coccyx being damaged, but she could not find anyone who could help me. On Sunday, I found this site and all that I have discovered points directly to this being coccydynia. I don't know what type of doctor will be able to diagnose this. I am scheduled to see a neurologist soon. Does anyone have any helpful suggestions about doctors? I live in Birmingham, Alabama and I need help!

Updated 2001-09-22




A comfortable chair

Ann, UK

I just wanted to tell you about a solution of my own that you might consider adding to your site - Having found that a director's chair, as recommended by Kay, is quite comfortable because of the gap at the back for my tail bone to hang over, I recently thought that the same principle might apply with a collapsible wheelchair - i.e. the back upholstery is generally "slung" and and so are the seats, just like a director's chair, but they're more comfortable for longer sitting.

I've bought myself a wheelchair for use to sit at my computer - it's a Sunshine Medical (Tel  UK 01384 446688,) "Breezy SL" self propel lightweight wheelchair that has a fully adjustable back rest (an "optima" tension adjustable back) which has velcro straps under the uphostery. The bottom two straps of the back rest can be loosened to allow you to hang you tail bone over the back without having to cut off any material from the seat. I just use a thin fleece on the seat to give my legs a little padding which also softens the seat edge - Since I got my wheelchair I've experience absolutely no tail bone pain whilst I'm in it and I've tried it out for hours on end.

My wheelchair was quite expensive because I particularly wanted a lightweight one, but I did try out some other cheaper ones that were equally as comfortable, even without the adjustable back rest upholstery, because they had quite a gap for my tail bone to hang over anyway. It's just a question of trying different makes out in a showroom and sitting for a while to test them out.

Hope this might help others - particularly in the work place - being it's a wheelchair you can just wheel it along to other rooms, meetings etc with ease. Could even take it to cinemas and theatres, pubs, evening classes etc etc.

I do get some strange looks when I push my wheelchair and then sit in it, but I couldn't/wouldn't do without it now despite feeling very self conscious at first. Occasionally, if I'm going somewhere with my husband I don't let on I can get out of it - he pushes me into restaurants etc and it saves me having to explain anything to anyone.

I would like to add that not only do I have coccyx pain, I also suffer with Fibromyalgia Syndrome (a chronic condition of unknown origin, although there are plenty of theories, that involves widespread muscle pain, stiffness, severe muscle spasms and overwhelming fatigue amongst other symptoms which include plantar fasciitis) - I'm always pleased to be in contact with others to share coping strategies/treatments.

Updated 2001-10-14




Anonymous

Hello coccyx pain comrades,

It is so nice to find this site. Thank you all for sharing your experience. I too have had coccyx pain for 8 months. I tried massage, ant-inflammation drugs for a month, a chiropracter, and a cortisone shot. No luck. Actually, the shot made it worse for two weeks. One Dr. gave me a preliminary diagnosis of localized arthritis.

I spend most of my day standing. Now my feet have started to hurt. Life is getting more and more challenging. My coccyx pain gets bad enough when I sit for a short period of time. I am so worried about a long flight that I'm afraid to travel. The pain gets worse when I lean back in a chair. Even sitting on my cushion for more than half an hour hurts. I do get ok sleep. My husband cut a hole in my heavy foam pad on my bed, so every night I can sleep over the hole.

Update 18 months later:

I got better when I started to eat more red meat and walk everyday. I still have to be careful. But I am so much better than a year ago.

Updated 2001-05-14




Surgery Update - 11 weeks post-op

Anonymous

Just to give courage to those who might be contemplating surgery, I'd like to say that I'm very happy I had my tailbone removed and feel like I'm almost fully recovered (90-95% better)! Prior to surgery, I had suffered from tailbone pain that began gradually without any injury and became worse (with knifelike or throbbing, burning pain) over two years in an all-day sitting job. I had tried a series of injections, pillows and medications without complete or permanent relief.

It's been about 11 weeks now since my tailbone was removed in January 2001 by an experienced orthopedic surgeon (who has done >50 cases). My recovery has been very fast and I'm back to doing ALL the normal activities, including gardening (with lots of squatting, digging etc.), playing tennis, driving a car, sitting on soft or hard chairs (without any cushions), sitting at the computer (for a couple of hours at a stretch) etc. I still tend to lean forward as I sit and take breaks lying down (mostly out of old habits), but feel like I've got my life back (without having to take daily medications)!

I was deemed a good candidate for surgery, because my coccyx was hypermobile (with telltale pain going from a sit to stand position; also shown on stand/sit x-rays, although the standard x-rays and MRI appeared normal). I got temporary relief from local injections around the tailbone area (which confirmed the source of my pain) and had tried conservative therapies for more than a year.

As I've said before, I'm convinced that more people from this group (t-bones) could benefit from surgery PROVIDED that their pain is caused by the tailbone (not lumbar spine, cysts or tumors etc.) and that they find an experienced surgeon with a good track record (like the one I found through a referral by a member of the t-bones group).

Note from Jon Miles: the surgeon was Dr. Gonzalo A. Covarrubias, but unfortunately as of June 2005, Dr Covarrubias has retired. See the List of Doctors and other specialists

Updated 2001-04-02




Pain in coccyx with no injury

Anonymous

I had pain in my coccyx about 2 years ago. I had not injured myself when it started hurting. I could not sit for very long. I went to the Doctor and she gave me medication (I can't remember what it was) but it helped and the pain went away.

Then a year later I had blood in my stool and had a colonoscopy done and they found 2 polyps which they removed. About 5 months after that the pain in my coccyx returned with no injuries. I went back to the doctor and she gave me the same medication which did not help this time. I had an X-ray done and also a bone scan and they found nothing. I started walking and it seems to be helping.....now I have a pain in my hip!!!

Updated 2001-05-24




I have no idea how my tail bone was broken

I have no idea how my tail bone was broken . . . the most painful of all pains I have ever encountered in my whole life. I haven't come to the conclusion of having it removed, however.

I am on anti-inflammatory medication which seems to relieve a great deal of pain. I take Relafen 500 mg. two times a day, that's a 1000 mg per day and this seems to be helping some. If the worst comes to the worst, I'll have it removed. I hope all sufferers of coccyx pain have a restful summer.

Thank you

Updated 2001-07-21




Pain came on slowly over 4 years

Anon 11 - V8euphoria@aol.com

I have just figured out that this pain I have been experiencing for 4 years, isn't normal after all. I just thought I had a large tailbone and that most people probably feel the same way after sitting for a while. But, I went to the movies with my husband a couple of weeks ago and after 15 minutes in the seat, I had to switch from left to right constantly because it hurt so bad. Of course, being the optimist, I figured they were just poorly cushioned seats.

My grandfather passed away in Florida and I had to drive there from my home in VA. By the time we were on the road 2 hours, I was in tears due to the pain in my tailbone. I then had to drive to Ohio for the funeral and again was in excruciating pain.

I had my husband buy me one of those inflatable donuts, and I sat on it for most of the ride home, it didn't help, in fact it hurt more. I have been having some pains in my knees, ankles and left hiney cheek for years as well, I wonder if they are linked. I didn't injure that area that I am aware of but I am the mother of 4 children, the youngest being 4 1/2 years old. I believe the problems started around her birth. I was only in labor for about 6 hours with her. I have read some of the other stories about the childbirth thing, maybe that is the cause of mine.

I haven't noticed the pain when standing thing though, it hurts when I am sitting or lying on my back. I can feel a dull pain while standing and I sometimes get comfort when my husband rubs the area. Is this the case with anyone else?

I saw an orthopedic doctor yesterday for my knees and mentioned the pain in my coccyx, he said he wanted to do an MRI on my knee first to fix it, then he would do an MRI on my tailbone. At the risk of sounding like a hypochondriac, I didn't tell him that the tailbone pain was worse than the knee and that I have also been having pain in my other knee, my ankles and my butt cheek.

After reading some of the posts on here, maybe I should have told him.

Any suggestions ??

Updated 2001-08-25




I'm so sick of doctors telling me there is nothing they can do

chrisandisis@cs.com

I am a 44 year old male who for the past 4 years has had to endure this tailbone pain. It is so bad sometimes that I literally feel I'm going to pass out when I stand from a sitting position.

I'm so sick of doctors telling me there is nothing they can do. When I ask for pain medication they look at me as if I'm some sort of drug addict.

I mention that my general health does not allow surgery at this time I, am 75 pounds over weight and have high blood pressure. This pain is so terrible I do have thoughts of just saying the heck with it. I have tried the NSAIDs from Aleve to Orudis KT to Naperson. All they do is make me sick to my stomach.

If anyone has a suggestion as to a doctor in the S California area who will treat (at least at this point) the pain, and not say there is nothing prescription-wise they can do for me, I would be so grateful.

Thank you

Updated 2001-09-22




I am losing all faith in everything

Anonymous

I am now 30. About 7 years ago I had an abscess which was drained under emergency surgery. It grew in size very quickly and during the night it was the size of 2 table tennis balls put together. After this operation I was in pain for the following 5 months and after several visits to the surgeon he said that the sinus that created the abscess needed to be removed because that is why I am still in pain. So this was done. The pain was worse and I could not sit down. I had 3 sets of steroid injections under local in the space of 9 months and this did not help.

I then went to a second, third, fourth and fifth specialist to get some answers. The pain was bad I had just got married and things were getting on top of me, depressed and unable to get any conclusive treatment.

The answers they all gave me was you have to have the coccyx removed. This was my last resort and I turned to alternative medicine. Acupuncture, herbal remedies, osteopathy, and pillows. Nothing was helping.

All the surgeons I went to were spinal. Nov 1999 I had the coccyx removed. What a mistake. If I thought I was in a lot of pain before, after was worse (much). I was given pain killer after pain killer. Went to pain specialists to get various cocktails of drugs. Prozac which was being used as a nerve block and morphine. Nothing was helping. With all the tablets I was taking Jan 2 was the turning point for me, I had the most terrible stomach pain and was rushed to hospital. The tablets had damaged my bowel. From that day I decided no more tablets. I had to find another way.

It took me 6 months to come off all the tablets as they had very bad side effects.

I was recommended to see a neurosurgeon about a year ago. The first thing he said to me was I do not know why they do this operation anymore, the success rate is not good. He said straight away Rhizotomy. If I would have gone to him first I would have probably needed two or three injections now the coccyx has been removed it would need a lot more.

I have had three so far and it has not started to help. I am losing all faith in everything. I will go anywhere and see anyone just to get rid of the pain. MRI scan shows nothing XRAYS shows nothing, but the pain is still there.

Has anyone got any good ideas?

Updated 2001-10-06




Car accident to blame?

Anonymous

This website has given me new hope. In January 2001 I was in a car accident. I experienced whiplash and hip pain. After months of physical therapy and now 9 months later chiropractic, I still have excruciating pain in my tailbone.

About 4 months after the accident I had my first "flare up." My husband and two children (1year. and 2 & half) drove to Sea World. That weekend I experienced what would become an all too familiar pain everytime I tried to get up from sitting down.

My "flare ups" are so similar and I felt like my symptoms were so consistent that I could not believe no one has said, "I know exactly what you have." Instead it is, "try this, try that, take this medication and rule out all other possibilities."

It wasn't until I stumbled onto your website that I realized I am not overreacting and my pain is very real. Its nice to know what is causing the pain now to find someone who can direct me with which treatment to take. I will update this letter as things "hopefully" improve.

Also, I was in a sledding accident in 1991 which resulted in years of chiropractic for my hip...maybe its related.

Updated 2001-10-14




Pain, pain, go away- don't come again another day!

Anonymous

It's been over a year... August 18 2000 to date. All I did was gardening and pow.... there it is again.. that pain, and this time it wouldn't go away.

Well, six cortisone shots, 3 bouts of physical therapy, about 10 chiropractic visits including Logan treatments, and 3 orthopedic surgeons later I have finally had my coccygectomy by a fine young surgeon down at UCLA.

I am 8 days postop now. Not doing as well as the others, but I am hopeful I will be there soon. The pain is different, not so deep. More like a cut that got some rubbing alcohol in it. Burns and hurts, but not so deep.

Warning for people looking for cure from chiropractor: Short term injuries can be treated via this method, but long term sufferers will find mostly only slight relief due to untreated damage, nerve damage, or scare tissue, etc. Though the pain in the butt may not be cured, other side affects of this injury may be helped by chiropractic care. The logan treatment can help with bladder problems, low back pain, and some muscle cramps.

Posted 2001-10-28

Update:

I'm 3 weeks post-op. I'm not completely pain free YET... but I know I am definitely on my way there. The pain is totally different from before. Did I mention how small the scar is- even now it is hardly noticeable. Yes I still take pain meds, but not for much longer. And it's only been 3 weeks!!!! I'm asking myself now why I waited so long. I know why... I wanted to give my regular doctor a chance... also insurance was giving me some problems.

My doc at UCLA gave me permission to give everyone his name. He is Jeffrey C. Wang (see Doctors and specialists in the USA, California) Please note that I was only his second coccyx surgery. His first surgery was 100% recovered. The way it's looking now, that may be two full-recoveries. This doc is young, smart, and straight to the point.

Updated 2001-11-11




Could this be coccygodynia?

Anonymous

I am female. I went to my doctor in Jan 2001 suffering with discomfort in the rectum (just up and to the right) . I felt as if I was sitting on a rod. I was told I may have bruised my tailbone and it would get better with rest. I was given anti-inflammatory tablets and painkillers. I had shooting pain on taking big strides when walking and a vague ache in my right hip. I suffered (and still do) recurring bouts of nausea and diarrhoea (my body's response to the pain and/or strain in the area?).

By February I had an ache in my groin, lower abdomen on the right which became progressively severe.

By April, my periods were disrupted - they stopped and came back in July and only returned to normal in October (again my body's response to the pain as they are better with rest at home?) The pain in my abdomen/groin was severe and took my attention away from the strange feeling in my behind. This also became the priority for medical investigation - inconclusive.

I ache all the time in the curve under my right buttock. My stomach is bloated. I frequently suffer pins and needles in my right leg and heel pain in my right foot after walking for a while. If I sit badly I get pins and needles in my right arm. I get frequent "ice-cream" headaches on the left of my head. I feel as if the nerves are stretched through my right buttock and over my right hip - as if they are caught in my tail. My abdominal and buttock pain is triggered by car and train seats and the associated vibration. It is present all the time, even on waking and aggravated by sitting in the wrong position (such as a car) or walking at a normal pace. Once triggered the pain stays all day and only eases with complete rest. Occasionally, when walking or moving suddenly, I get a shooting pain up through me as if someone has given me an electric shock. My mobility is decreasing and I feel if I move too much I will rip something. I often have a very strange itching sensation inside my back and abdomen as if something is trying to heal itself.

I have had ultrasound, x-rays, barium enema, internal examinations, physio and an MRI scan - all inconclusive. It is now November. The doctors have no idea what is causing my problem and can only treat the pain. I have been taking painkillers, anti-inflammatory tablets and anti-depressants (I have been told that they have some effect on this type of pain if taken at night - help to relax the muscles and change the brain's reaction to pain). I have also tried arnica cream and tablets.

I am not depressed and the pain is very real. I adore my work and am happy in my home life. Although I fear that I will become depressed as my life - both work and social - have been put on hold this year. I am terribly frustrated and looking for a name for the problem and appropriate treatment. I am fortunate enough to be able to work from home otherwise I don't know how I would cope.

Could this be coccygodynia?

The worst of the pain is in my abdomen with only discomfort and occasional shooting pain in my tailbone when I bend forward or move from sitting to standing. I have trigger/tender points in various places up my spine to my neck but the most tender point is in my bottom. My tail area feels very odd and heavy all the time.

Reply from Jon Miles: This doesn't sound like the normal symptoms of coccydynia. Maybe it could be pudendal neuropathy, or some other trapped nerve problem, or a muscle/ligament problem. Have a look at the What is coccydynia? page. And have a look at the Investigations page, for the tests that can sort it out. The tests that you have already had help to rule out some conditions, like cancer, but they are not much help in telling whether or not it is coccydynia. The best tests for this are the dynamic sit/stand x-rays, and the injection of local anesthetic.

Updated 2001-11-18




Fanny hurts to sit/Feet hurt to stand

Anonymous

I have had cocyx pain for some time with little help from anti-imflammatory mediciness.

I have noticed that I do get some relief after a Medro-Depo shot (in hip like for allergies, not in coccyx) that last for a few weeks at best.

I am now having terrible pains (aching) in my heels of both feet during the day and horrid burning sensations in feet at night.

I am not sure what doctor I should see - I have been seeing GP. HELP!

Updated 2001-12-02




Vioxx has helped, but surgery is an option

Anonymous

I have for no reason had pain in my coccyx for about 1 year. My doctor gave me Vioxx which has helped immensely but still much pain going from sitting to standing up. I am going to ask for the cortizone shot and then if that does not help coupled with the medication I am going to request surgery.

Waiting until it goes away (my doctor told me sometimes it takes 3 months) is not an option. With almost a year just waiting for the shot I feel I have waited too long.

Thank you for your site and thanks too for those that have shared their experience. It has helped me plan what to do next in my particular situation.

Updated 2001-12-30




Swollen spot on lower back

Anonymous

I am a 47 year old female and have been suffering from low back and leg pain for several years. About 3 months ago my Doctor (Spine Specialist in Minnesota), after pushing in and around the tailbone gave me the injection. This immediately stopped the pain for about 2 hours, and then I really struggled for the next 2 to 3 weeks. It helped mostly with the leg pain. I am scheduled to go back next week for a 2nd injection. I suffer almost constantly.

I continue to work but it has been very difficult. I also have a swollen spot on my lower back, which at times swells up and looks like a knob sticking out, usually after working 3 days or having to sit for a long period of time. It is very frustrating and I do not know what I would do if I didn't have this site to read. I have felt for some time a connection between bowel movements and my tailbone pain and just read today that others have also felt this.

Updated 2001-12-19




Had surgery, 7 months pregnant and can't stand the pain

Anonymous

I have learned a lot reading your site, and thank god I found it. I live in the US, in Connecticut next to New York.

My doctor is treating me terribly, I have to get a new one. I guess a Neurosurgeon is best. I am in tears. The doctor walked out from my last appointment, and I said "wait, what are you going to do for me?" He says nothing - I am pregnant. This is after he told me, when I announced my pregnancy, that I was crazy and should of had my tubes tied. Last visit he said that he gave me the ratings he did for disability because it doesn't matter what he says, or me, that anyone would say that I had no business getting pregnant if my back and neck hurt this much. He is cold hearted.

I fell on ice in January 99 going to work. It was black ice with no salt or sand, I had a laptop in my hand which must of twisted and weighed me down. I waited one year to have the tail bone removed as the doctor said I would not be able to walk if I broke it at the joint. The only thing that looked bad out of an MRI and bone scan was that there was no fracture line, just a total black tail bone. I was told I probably hit a blood supply and killed it to the bone. My neck and head and arm ribs were hurt too. Maybe my headaches (still present) and neck are from the back, from what I am reading.

I had the tailbone out in January 2000 and was told it was a mobile fracture, which explains why I live with 2 tush cushes and kneel at my desk and can't drive to work 5 days a week. I was pregnant at the time of surgery and didn't know it and the doctor said "well, the worst that could happen is you lose it", and I did! Now he is outright cold and not treating me due to another pregnancy. I am 7 months and can't stand the pain, my hips kill me and my pelvic bone too, I CAN'T SLEEP! If I do fall asleep I wake up with bad pain and use ice and tylenol.

I know I am rambling, but I have to have relief. I feel like an idiot and that no one believes me, even the doctor that did the surgery and saw the break! I am told 'no' to what I tell him. He said just because I say I can't sleep and sit and have my child (4 year old) sit on my lap or do any activities or school at night or workout or clean that I still have no effect on my life. I almost wish I was paralyzed so I wouldn't be in pain. I can't do anything anyway.

I have never missed worked except for the surgery, or the day here or there for test and epidural injections (they do help). My vacation time for 2.5 years has been all related to my injuries.

When it is your tail bone and a workers comp case it is a double whammy against you and you. I just want to be pain free, a zillion dollars from workers comp isn't going to get me anywhere if no one will help me. I wasn't checked again after the surgery to see the status of the sacrum or pelvis, I am in PT for pain relief and the doctor didn't even schedule another appointment for me.

It is an embarrassing injury and you are treated like a crazy person and it can drive you crazy. I get scared thinking about my life tomorrow, next week, next year, 5 years, I imagine in 10 I will be unable to function at all.

I currently can hardly walk up stairs, I don't know why going down is o.k. but I think I look like someone with multiple sclerosis or something when attempting walking upstairs, especially the more tired or worn out my back is!

I am having a c-section and a cortizone epidural injection the day after the baby is born in July but think that I should give up on the Ortho now and get a Neurologist and should of went to a neurosurgeon before.

A few months ago I would of said I was better by 40% prior to surgery, but I never slept then and lived on pain pills and ice packs!

Updated 2001-05-20




Coccyx pain for over a year, injections didn't help. Also get pain on intercourse, abdominal pain.

Anonymous

A year before my coccyx pain began, I had a cyst on the outside of my coccyx area. This went away with antibiotics.

A year later and I started experiencing a slight, dull pain in my coccyx on sitting, similar to what I had with the cyst, so I went to my GP to get antibiotics before it got any worse. He said there was no cyst and that I had coccydynia and he could give me a steroid injection to solve it. He did this and it was the most excruciating injection I'd ever had. I could hardly walk afterwards and for 2 weeks I was in the most pain ever and had fever and really thought I might die (sounds exactly what Jennifer went through when she was shaking and couldn't move, and I was on drugs to stop me throwing up my pain killers as she was). After that it settled slightly but the pain in my coccyx was worse than when I had gone to my GP and has been like that ever since. I have most pain on sitting and bending, but also if I walk a long distance or if I lie on my back or if I stand for a long time. The only activity I can do without any pain in my coccyx during and after is swimming. Absolutely everything else in my day to day life causes me pain.

I'd had the coccyx pain for about a year when I started to get a burning pain during intercourse. At first I didn't think it was related and I had all the STD and GUM clinic tests which were clear and ruled anything like that out. The only thing I am waiting for is to see a gynecologist (in a few weeks time) to rule out endometriosis, but from my symptoms I don't think I have that (after speaking to other sufferers). I have noticed that if my coccyx pain is particularly bad then the burning pain during sex is much worse. Sometimes I get hardly any pain on sex and this is when my back is not bad too so I think they are related though no doctor can see this. I have also been getting lower abdominal pain for nearly a year which is not extremely painful but is always there and occasionally gives me a stabbing pain. An ultrasound scan ruled out cervical problems.

I have had two injections and manipulation under anaesthetic and these produced no effect whatsoever. The consultant that carried them out has put me on a waiting list for a partial coccygectomy operation, but I was not convinced so I've seen a private consultant for a second opinion. He sent me for an MRI scan which ruled out any infection, abscess or cyst in the area and just showed that my last two coccyx joints are abnormally bent forward. On examination he noticed I have a small hole on the outside of my body near my coccyx, which is a pilonoidal sinus, but the scan didn't show any swelling inside so they may not be related. He does not think the partial coccygectomy operation will help and has recommended specialist physiotherapy to address the pelvic floor muscles. If that doesn't work then he says the only option is 'pain clinic' where they would cut the nerves in my pelvis to reduce the pain.

Does anyone else experience these problems or do you know anything about specialist physio/pain clinic as I can't find much info on the net. If anyone else has pain on intercourse linked with coccyx pain I'd like to hear from you.

Thanks.

Updated 2001-11-18




Can't sit, husband getting mad

Barb

I have had pain in my coccyx for going on 4 years now. One morning while sitting on the side of the bed, I leaned back to put my shoes on and noticed a really sharp pain in my tail bone. I had not injured myself that I could remember. (I was only 50 then so surely I wasn't developing a memory loss.)

As time went on the problem persisted I went to see my chiropractor. He tried external and yes, internal therapy. I found the internal therapy very stressful. I wasn't able to sleep afterwards. My legs jumped like frog legs all night. I did not receive any help from this treatment.

I went to my regular doctor he ordered a series of x-rays ( CAT, MRI, pelvic and abdominal) No problem found. I was then referred to a pain clinic for injections. No help there either. Next I was given drugs. These were no benefit at all. I also had physical therapy, these people were nice but finally admitted they had never helped anyone with this problem.

I travel a lot and also sit behind a desk a lot. I have had to stop going to meetings of any kind because the pain is so bad that I can not stand to sit for more than a very few minutes. I need help to get up after a prolonged period of time and find that too embarrassing to put myself through.

My husband thinks that there should be a cure for this and that doctors should be able to fix anything that is wrong with the human body. Ha. We own an auto repair business and he says that people would not stand for him to give the results that I have had to pay for.

I am now waiting to be referred to KU Med Center in Kansas City. Has anyone had any experience with anyone there? I am a bit nervous after reading some of the results of the surgery and lack of results with anything.

A little more insight into my particular case: I also have lymphedema in my right leg. It is primary lymphedema and has caused me some trouble in the past with swelling and infection of the foot and leg. This, I am happy to say, I have learned to control the swelling and infection with exercise, diet and very careful cleaning of the problem area. I bring this up because for years the doctor told me to keep my feet elevated as much as possible. I got in the habit of sitting with my feet propped up on my desk. Of course, this must have put a lot of stress on my coccyx. No other injury that I can think of.

Now, this also brings me to another problem. I can walk with no problem, in fact that seems to help with my leg problem. However, I can't just stand or stroll, so trying to stand at work makes the swelling in my leg worse and leads to a greater risk with infection. Sometimes I feel that I am one complication after another. For years I had such good health and since I turned 50 I seem to be falling apart little by little.

Barb

Updated 2001-04-15




I'm looking for help

Barb French  groupy12@hotmail.com

Hi! I am a 39 year old women who fell down a flight of stairs 11 months ago.

I have had every treatment and test available in Canada. I have been told that the joint between by saccrum and coccyx was strained. I can't sit beyond 10 minutes and the pain is always there. I find it increases during my period. I am told that surgery would not be of any benefit and that I need to learn pain management.

I am at the end because I can't even work. Can someone help me.

Desperate in Toronto, Canada

Barb French

Updated 2001-10-20




Tailbone removal

Beth, LilRedCvc@aol.com

My name is Beth and I'm 41 years old.

My orthopedic surgeon is John Leach in Columbus, Ohio.

Almost 3 years ago I slipped & fell down about 6 stairs on my butt. I had to have a cortisone shot to make the pain stop so I could stand again. In February, 2000 I had a gastric bypass and lost about 50 pounds. In April, I fell at work and again landed on my butt. I needed another shot. In July my family & I went on vacation. While sitting in the hot-tub, I noticed my tailbone was on the hard surface and it hurt. As I lost more weight the pain got worse and my tailbone seemed to be getting longer. By July 2001 I had lost almost 100 pounds and was getting cortisone shots every 6 months along with taking 25 mg. Vioxx every day (sometimes 2 a day). I asked my orthopedic doctor if he would possible take out my tailbone. He ordered an MRI and after seeing the results said he couldn't promise anything, but he would do it if I really wanted it done. This will be only the second one he's done.

Friday, September 7, 2001 Surgery. I was supposed to be in the hospital for 23 hours of observation after recovery. Things went so well during surgery (he said the tailbone just about fell out) he let me go home after an hour in recovery. My 18 stitches are off to the left side rather than down the middle. The doctor said that way the incision doesn't have to be as deep. I only used 1 Lortab for a post-op headache. The pain in my lower back was much less than before surgery.

Had a post-op checkup on Monday September 10. Everything looked real good. No signs of infection. I can now sit up straight, just have to lean forward to relieve pressure off my back until it all heals.

Monday September 17. Remove stitches. I tried driving but I can't go very far yet. Usually I'm a passenger sitting on my foot or reclining on my side.

Things are improving every day. I am so glad I had it done. I didn't want to spend my whole life carrying around a coccyx pillow.

Updated 2001-09-22




Coccyx removed 7 years ago - no pain now

Candy

After childbirth -- coccyx broken. Put up with the pain for 8 years --numerous doctors -- cortisone injections -- nothing worked. Could not sit for even a short length of time in a well-cushioned chair.

Removed coccyx 7 years ago. Took 6 months to get over surgery. Absolutely no pain now.

Would do it again!!! It worked.

Updated 2001-02-24




How did this happen?

Cath - CathMc07@aol.com

My story is as follows: I was in a squatting position; then with clients legs in my arms I pushed up with my thigh/buttocks. I was attempting to put the clients legs up on the bed. I felt a pain in my right thigh/buttock area. It was bearable and I continued.

When the client was in their wheelchair I then went into a kneeling position. I reached over to my right to take hold of the clients shoe when I heard a crack and felt an explosion of pain radiate throughout my lower body area.

It turns out that I have a fracture through my coccyx bone. Quite painful and no position seems to give much relief.

This happened 4 days ago so it is all new to me. .

Most unusual I believe as I have been told that a fall is usually responsible for this kind of injury. I had no previous injuries to this part of my body.

Can anyone give me any insight into how this might have happened?

Any similar experiences out there?

Any info gratefully received.

Cheers Cath

Updated 2001-06-09




Fractured coccyx falling on the ice

Cindy - oshea1028@aol.com

I fractured my coccyx in January after a fall on the ice. After several months I still have pain. I can not sit up straight, If I lean back it hurts. I have a lot of the pain to the left of my tailbone. The pain radiates around to my hips and down to the beginning of my thighs. It will ache for a few days then go away and start up again, however, the pain in my tailbone is always there when I sit.

I went to the doctor on Monday because I couldn't sit or stand for long. It hurt to stand up straight. It hurt whenever I sat and I always have to lean forward a bit. It was so uncomfortable and the pain was becoming unbearable.

The Doctor took an x-ray of my pelvis. I got the results yesterday from a nurse at the office (my doctor was out of town) she said that there looks like there is a thickening of the bone where my spine connects to my pelvis. Has anyone heard of such a thing? She told me nothing can be done. I have an appointment next week with the doctor. For now I am taking naproxen, it helps a little but there is still some pain. Does anyone have suggestions or advice? Please let me know

Updated 2001-07-21




I felt a pop coming from my tailbone area...

Cori - COwen98@aol.com

I have been having tailbone problems since summer 2000. I think it might have happened when my horse decided he didn't feel much like riding and he decided to try to buck me off. Well, he wasn't successful but after he bucked me about 10 times about a week or two later I started to have tailbone pain.

I have seen 2 orthopedic surgeons and my PC doc and NONE of them have any type of answer or cure for me. I too went to the Texas Back Institute and found it to be of little or no help. I can't even get the stupid place to call me back to make a follow up appt. Sheesh! The doctor at the TBI told me to see a chiropractor, but I still haven't tried that, I'm too chicken.

Anyway, my pain seems to be getting progressively worse and tonight while out to eat at a restaurant I moved forward in my chair and felt a "pop" in my tailbone. Has anyone else experienced this? It was pretty painful.

Anyway, the two orthopedics told me that I probably just pull the ligaments in my tailbone and that there is really not much you can do about that. I did have an MRI done on the area and according to both doctors and the radiologist, it did not show anything broken or otherwise wrong...now what? Has anyone else been told that they tore ligaments in their tailbone?

I have tried to use a "doughnut" while sitting at the computer and driving, but it doesn't seem to do a whole lot. I am also starting to get tingling in my left leg and mostly my left foot, constantly! Has anyone had this problem that they might be able to attribute to the tailbone?

Update July 2001

Since I last posted a message I have had 2 sets of Cortisone (dep/medrol) shots. I think they helped a bit but the pain is back again.

I went to a PT and she told me that my body is out of alignment and that is why I am having the tailbone pain. She said my hips were really out of alignment. She worked on my tailbone from the outside and gave me some exercises to do when I got home. I decided not to go back because I don't really have too much faith in PT's. My doctor, the anesthesiologist, sent me to see one PT that actually does the manual manipulation on the tailbone through the rectum. They put me with another PT and said she actually specializes in tailbone injury, so I went to see her and decided that what she was doing and what she told me to do at home was bogus. I live out in the country and do not live anywhere near a PT so the thought of going 2 times a week for six weeks just wasn't going to work!

Anyway, I just wanted to update everyone on my latest attempts at pain relief. I also saw a chiropractor about 5 times and he adjusted my tailbone each time and I think it actually did a some good, but again, he is so far away from my home, that with work and taking care of many animals at my house, I do not have time to see him on a regular basis.

Ok, now for my big question: Has anyone out there had a Rhizotomy done on their tailbone? That is what my doctor is now suggesting. She said she and her brother, also an anesthesiologist, and herself have done several with good results. Her brother only had one patient that it did not work. I had a rhizotomy 10 years ago by the same doctor, for an upper back injury and I think it worked well, but I don't know how well it will work on a tailbone. I would like to hear back from anyone out there that has had a rhizotomy or is thinking about it and what they think. Please post this message and let them see my email. If anyone has any suggestions or comments they can email me at COwen98@aol.com. Thanks so much for your time. Sorry this is so long and messy, but I am in a huge hurry! =)

Cori

Updated 2001-07-01




What a relief to know that I'm not losing my mind

CS -  cws762@hotmail.com

I'm 39 years old and in very good shape physically . I live in the Dallas, Texas area. I've suffered from tail bone pain since the summer of 2000. Coincidentally, I first noticed it while I was at home for a few days recuperating from gallbladder removal surgery. Since then, the pain is often excruciating... and then sometimes I feel no pain at all. It seems that just when I think to myself that it's finally better, it comes back again even worse than before.

Like some others I've been told, my pain is most severe when I stand up from a sitting position. And the slightest touch of the area can send me through the roof (sometimes anyway).

My doctor last year suggested that over time my pain would subside. He talked about general inflammation that should resolve itself within a year. Well, guess what? It's still here... and worse than ever. My wife told me the same thing based on an experience she had with it years ago.

I've got my annual physical next week, during which I plan on bringing this up AGAIN.

Anyway, I have a question for the other men who suffer from this pain. Do any of you also experience generalized pelvic pain or symptoms associated with chronic prostatitis, or have you been diagnosed with chronic prostatitis? I was told that I have chronic prostatitis and "pelvic floor dysfunction" about a year before my tail bone began hurting. I'm wondering if there is a possibility that this could all be connected to the same condition.

I'm basing this theory on the fact that it appears more women suffer from coccyx pain than men... and coincidentally, the vast majority of people that suffer from "pelvic floor dysfunction" are women.

Any thoughts would be appreciated. Feel free to contact me at cws762@hotmail.com

Updated 2001-10-28




Killing nerves

Dan - neonwish@msn.com

My name is Dan and I am a school psychologist in RI.

I have suffered with coccyx pain for several years. I have had surgery to remove my tailbone, implanted electronic devices directly on the site (a major surgery to me) and I currently have an implanted morphine pump set at a high level which releases morphine directly in my spine. This pump is big and quite disfiguring and a sort of last resort given the dangers of having things inserted in your spinal column which relies on machinery and a computer chip. Even this has not significantly helped me anymore than taking medications orally did.

At this point it is recommended that I have the nerves around the site where it was removed. I wonder if anyone has had this procedure and how well it worked. Particularly someone who has had their coccyx removed prior to this treatment. Having had so many failures I am extremely worried about having this one.

If anyone knows about this please contact me

Thank you.............

Dan

Updated 2001-12-02




Fell down stairs - worst pain that I have ever felt in my life

Danielle Clark - dclark@bigpond.net.au

My story is I fell down a very steep wooden staircase and my bottom landed on the corner or edge of one of the stairs. It was the worst pain that I have ever felt in my life. I have had in the past a broken nose, dislocated elbow, severely torn ligaments and those injuries did not even come close to pain I felt the day I fell down the stairs.

The doctor examined my coccyx and said that there was no way that I could have broken it and that it was just bruised. The doctor would not provide adequate pain medication and told me to get over the counter pain-killers. The pain had not lessened by the weekend so I went back and was given and x-ray which showed no evidence of a fracture.

Four doctors and six weeks later I was still bed/couch ridden with pain and went and saw another doctor who could feel my coccyx bending a little more than normal and ordered a nuclear bone scan which showed high evidence of fracture at the saccro-coccygeal junction. The radiologist said that the nature of my injury would not have shown up on an x-ray.

I used a keyhole and ring cushion, which were useless and if anything made me more uncomfortable. I believe this was because my injury was on the upper section of the coccyx and lower section of the sacrum and when you sit on one of those cushions that area of your body touches the back of the cushion.

I could feel a clicking sensation when I sat down, especially going around corners in the car.

Getting from a sitting and standing position took courage as I could anticipate the pain that was just about to happen and I would yelp and cry when I did eventually change positions. There was nothing to describe that sort of pain and it is really one of the worst injuries to get.

A night I could sleep only on my stomach and I would wake up so stiff and sore and I could not change positions. I ended up getting physiotherapy on the rest of my back to help ease that pain caused by the odd postures that I had to adopt to compensate for the broken coccyx.

In my experience, people don't take this sort of injury seriously, including some doctors and even find it quite funny and there is not much sympathy out there.

My advice is to demand further tests if your x-ray is negative and you are not getting better.

Thanks for reading, sorry its so long!

Danielle Clark.

dclark@bigpond.net.au

Updated 2001-04-04




Success in Lexington, SC

Debi - Howsonfire@aol.com

My secretarial chair tipped over and dumped me out. I landed on the heel of my shoe, fracturing my coccyx at a 90 degree angle, with the tip poking right into my rectum. After 6 unbearable months of sitting on my doughnut and trying one anti-inflammatory after another, we scheduled surgery. My doctor told me afterward that when he entered the incised area, my coccyx was just barely connected by a thin piece of tissue. This explained the pain I had during sex, when I had the urge to have a bowel movement, and basically when I was awake.

Surgery was the best thing for me. I was out of work for 6 weeks, returned to work (with a new chair) sitting at my computer and have had no ill effects since. Every human body is different and everybody reacts differently to pain, so this may not be the treatment of choice for everyone. Unfortunately, you have no way of knowing ahead of time how your recovery will be, but if you follow the doctor's post-op instructions to the letter, your chances are better than good for a full recovery. My injury was rated as a 5 percent disability, which is nothing at all. If I had it to do over again, I wouldn't have sat in that chair, but I would have followed the same course of action.

You can use my name and my e-mail address, because I think there are a lot of people out there in pain because they are afraid to take action.

Debi

Updated 2001-08-25




Fractured coccyx during childbirth

Deidre - deidreandanthony@paradise.net.nz

It's really encouraging to see I'm not alone! I fractured my tailbone during a relatively short 'normal' birth. We all heard the CRACK and once I was moved I was in severe pain, which the doctors and nurses brushed off and told me to get up and around - it was impossible. I needed assistance to get up as I was in so much pain.

A word of encouragement for woman with similar experience and wanting more children - I had two more children and experienced minor pain after the second and almost none after the third!!

This happened ten years ago and I still suffer if I have to sit for long periods or on hard surfaces - but certainly not to the same degree as when it first happened.

Thank you for sharing your experiences

Deidre - New Zealand

Updated 2001-11-18




Coccygectomy saved my life!

Diane Roberts of Riverside, California - diane_roberts@yahoo.com

Please include my e-mail address if you decide to post my story. Part of my success stemmed from the ability to contact a couple of other women personally who had coccygectomies. Their support was wonderful.

I've been trying to decide what would be the best way to convey my experience in a "short but sweet" fashion. I've decided to go for the "" approach! Some of the bullets may not actually have anything to do with why I suffered from coccydynia but since they were considered by the multitude of professionals I consulted, I've decided to include them.

Here's the most incredible part:

Thanks again, Jon, for your efforts and I would be happy to correspond with anyone considering a coccygectomy as I truly believed that it saved my life!

Sincerely,

Diane Roberts of Riverside, California

Updated 2001-05-08




I am not crazy. I want the pain to stop.

Diane Sullivan - Diane.Sullivan@med.va.gov

My name is Diane. I am a 34 year old, mother of 3. In August, I slipped and fell, badly bruising my coccyx and sacrum. Sitting or standing for any length of time is very painful. I am controlling the pain with anti-inflamatorys, muscle relaxers and physical therapy. The physical therapy is not helping. Any type of physical activity including sex is very painful.

I am seeing an orthopedist who I believe thinks the pain is all in my head. I have never experienced anything like this. I was told the xrays and MRI are inconclusive. I am not crazy. I want the pain to stop. I would like to know what type of doctor specializes in the treatment of this type of injury and what treatments work best. I would welcome any suggestions. I want my life back.

Updated 2001-11-25




Slipped Disc ? Don't think so!

Helen Fletcherl@irwinmitchell.co.uk

About 3 years ago I damaged my back lifting weights in the gym - which resulted in me going to the doctor where she told me that I had slipped a disc - the pain was awful and I ended up being off work for quite some time.

After bone scans and MRI scans it was decided that I should have the injection and maniuplation for my coccyx. After having this done I must admit the pain did ease but it came back with a vengence and continued to get worse. So again after several hospital visits I was put on the waiting list for the same procedure - which after 3 cancellations I was finally admitted.

This time it did not work and as a result I am now having physio - because the surgeon doesn't know what else to do - I've been told that the surgeon could have disturbed the coccyx which has had an effect on my pelvis, saccum (both have slipped) - anyone have any suggestions? I just don't want that man going anywhere near me ever again!

Before all this happended I was a fitness fanatic - but now haven't been able to go to the gym which is frustrating!

Updated 2001-09-24




Need help in NY or NJ for PT and Orthopedist

Irene - larry.hart@csfb.com

I'm using my husband Larry's e-mail since I'm home after the 2nd car accident hurt my coccyx again (coccygodynia, sacrum and sprain). I had a MRI test and got diagnosed with 2 herniated discs on spine: a small one L3-4, another one L5-S1. And a disc bulge on spine L4-5. Luckily none are leaning on a nerve. I'm home on disability recovering for at least 7 weeks. I already sore (misspelled) an orthopedist, who says not much for treatment except anti-inflammatory and Physical Therapy or traction.

After reading www.coccyx.org website, I ordered coccyx seat cushions: Relaxo-Bak and a Tush-cush. I like Tush-cush better.

I don't tolerate well NSAID's. Did anyone ever try Celebrex medicine? I have some stomach problem with it too.

Is there any good Physical Therapist in New Jersey or New York? Also the name of a good orthopedist? Any type of PT that works?

You can e-mail back to me at husband Larry's e-mail: larry.hart@csfb.com

Is egroups.com a good chatroom to join?

Thanks,

Irene Hart

Updated 2001-05-20




Coccyx wags backwards and forwards

Jane Sampson - jane.sampson@veritas.com

I am now 25 and started having pains around 1989. I went with my mother and saw my local GP in Western Australia about the pains I was having in my coccyx. I informed her that I was getting pains when I sat in L-shaped chairs of an acute angle, as opposed to obtuse, or leaning forward while sitting down for long periods of time. It hurt even more when I tried to get out of the chair. I could feel the pain as I started to lift myself from the chair. When I get into a position of half standing that's when the pain would reach the highest point. I would eventually stop there for about a couple of seconds because I couldn't move without feeling more excruciating pain. Once the pain subsided and I could feel that it wasn't going to hurt anymore that's when I could stand up fully. With this information she said that I would need x-rays to determine the problem.

So during that week I went to the radiology clinic and had an x-ray taken. (I had my mother there with me). I took the x-ray and summary of the results to another GP since she was unavailable. He read out the results and it read "There is an anterior slipping of the coccyx in relation to the lower sacrum. There is incomplete fusion at the anterior aspect of the upper coccygeal segment rather that due to fracture." After reading that summation to me he showed me the x-ray. The point of where the sacrum and the coccyx met there was quite a gap and that's where my coccyx leant/bent forwards as if to sit on it. And looking at it further, there were gaps between each segment in my coccyx, but not as pronounced as the gap between the sacrum & coccyx.

He then proceeded to have me lie down, where he would physically try to move my coccyx. He put his finger in my anus and then push it backwards & forwards and forwards to show/explain to me why it hurts. He then tried to "pull it back" to alleviate pain temporarily. After, that he sat me down with my mother and explained that when I sit down in certain positions I am placing more pressure on my coccyx due to the angle it is already at. And the reasons why it hurts, is when I get up "it wags backwards & forwards". I thought great, I'm deformed. I feel like a dog because I have a true tail that wags. I asked him what would help to stop the pain. He stated there really was nothing that could be done. He said I could get pregnant and that would push my coccyx backwards, to which my mother look absolutely horrified. (As if her daughter at the age of 15 is going to get pregnant to help her butt - I don't think so).

He then said I would just have to be careful of what chairs I sat on. They had to be comfortable and preferably not hard, something with cushioning. He then suggested this cushion filled with air shaped like a doh nut. This cushion when sat on, placed no pressure on the coccyx because you weren't really sitting on it. My coccyx would actually be in line with the whole. So mum decided to buy for me it would this would help me.

I didn't mind this cushion but I found it really embarrassing. It temporarily helped, but you had to inflate it to your comfort. In the end, I gave up on this cushion (I have no idea where it is now). It hasn't hurt since then until recently. And that's because of the couch I'm sitting on at home.

I can understand and live with not having a cure as such for this problem. I was just glad when I first went to a Doctor, that they were able to explain me what was wrong and why it hurt. Now it's up to me to understand & know my own body and work out a pain-management solution.

But, in relation this whole problem I have (which I don't know the name of - if there is a name), I was ecstatic when I found this website. To be able to find other people out there with similar conditions to mine, was a relief. If I tried to explain this to people when they saw the look on my face when I tried to get up from a chair, was very difficult and embarrassing on my behalf.

After reading other people's situations, I don't want to have my coccyx removed since it serves a purpose in my body structure. Also I do not want to have cortisone injection because my pain is not that bad and you can only have so many injections in your lifetime - before side effects start setting in.

This letter does not give a cure and will not help everybody, but hopefully after reading this article you will learn to know your body after the experiences you have been through. From there you know what situations/positions not to get yourself into, so as to alleviate pain in day-to day activity. But, if you are in pain all the time and the only alternative left is radical treatment then, there are a few websites that show summations of research into case studies undertaken on cortisone injection into the spine & removal of the coccyx. Hopefully, these will answer some of the pending questions you have about the treatments.

I would appreciate if anyone could give me any insight into the term for (if any) on "incomplete fusion of the coccygeal segment". On looking through everyone's submitions of their experiences, it seems that most people have experienced pains resulting from a fracture rather than incomplete fusion.

Good luck to everyone, and may the pain subside!

Jane Sampson

My email address if anyone would like to contact me is jane.sampson@veritas.com

[Note from Jon Miles: Jane was diagnosed with "incomplete fusion of the coccygeal segment" and others have been diagnosed with fracture of the coccyx. It seems that both of these diagnoses are usually wrong, and are based on the idea, given in medical textbooks, that the coccyx is normally fused into one piece in adults. This is not true - doctors who have examined uninjured coccyxes have found that they normally consist of two or more pieces. Doctors who do not have experience in this area look at an x-ray of a coccyx of someone in pain, and find that the coccyx is in several pieces, and think that either it has been broken, or it never fused together properly. Also the idea of getting pregnant to reduce coccyx pain is bizarre - pregnancy is often a cause of coccyx pain!]

Updated 2001-06-09




This takes some explaining

Jane - jane.foster2@ntlworld.com

I am now suffering extreme pain from a bruised coccyx and just hope that it heals quickly, as I do not want to remain like this for too long.

A long story involving a pair of new bedroom curtains, a chair and a wrought iron bed. I fell of the chair and impaled myself on the bedstead resulting in damage to my coccyx. Try explaining that to everyone, and I get yer, yer, nod, nod, wink, wink. I can assure you it was not very funny at the time but can now see the funny side.

Can anyone tell me how long this problem with sitting and getting up will last.

I am at present off work but cannot remain so indefinately.

Jane

Updated 2001-11-03




Sometimes... fine / sometimes... excruciating

Jeff   deer97fan@aol.com

I have read these posts, and although my situation isn't nearly as bad, I think it's related. Any advice is welcome.

I fell about 2 years ago landing square on my butt from about 5 feet in the air. I didn't see a doctor because I had always heard that even if the tailbone was broken, there was nothing that could be done - it just needed time to heal. I figured I broke it or badly bruised it as I couldn't sit - I couldn't drive - unless I was leaned over to one side not putting any pressure on it. Even standing up from this position was dreadful. It took about 3 months before I felt that I was back to normal.

Within the past 6 months I have noticed the pain coming back. It doesn't hurt when I'm sitting... but getting up or sitting down, and even walking after sitting for awhile is painful. When I get up - it's a shooting pain. When I sit down - shooting pain. When I'm walking - it's more of a stiff dull pain. It perplexes me as I can ride my Harley for 20 hours straight and feel little to no pain - but getting on and off of it - are a nightmare. Does this sound at all related to what you all are talking about? Is this an early warning stage? What help should I seek to try to remedy this? Thanks for all the pertinent information.

Updated 2001-09-30




Pain turned out to be caused by a pilonoidal cyst

Jennifer. Singjenn@aol.com

Because this story is long, here is a brief summary from Jon: Jennifer had bad coccyx pain for years, and medicines and a cortisone shot didn't help. Her doctor then removed the coccyx. Afterwards the wound opened right up and became infected. Trying to heal it up was a very long and very painful process. A second surgery didn't even help. Eventually she went to another doctor, who referred her to a surgeon. This surgeon saw straight away that there was a pilonoidal cyst in the hole. He removed the cyst, which was the size of a tomato. Jennifer's original pain has now gone, her wound is closed, and she is doing fine.

Jennifer's story:

I had been having extremely bad tailbone pain for about 6 years. The pain was sharp and piercing at the top of my butt crack. There were times when I could barely sit or even lay down. When I would move the pain would get worse. I tried all kinds of pain medicine but nothing worked. I went to my family doctor when I was about 16. he told me it was because I had "no padding on my butt." I thought that was not right, but I left it alone. Shortly after I got married last May the pain got worse. It was so unbearable I finally went to a doctor again about the pain. He started about an inch above my tailbone and he said that when he got to the right place to tell me. I didn't have to tell him because when he pushed on it I screamed. He felt really bad for hurting me. He thought for a minute and told me he had no idea what was wrong, but he wanted to get x-rays of it. Then the doctor referred me to an orthopedic surgeon. I brought my x-rays with me. He looked over them and didn't say all that much about them. He asked me when I hurt and I told him. Then he said there was a few things we could do for the pain. Surgery, which was a last resort, cortisone shot, an anal exam in the office, or manipulation under anesthesia. he did the anal exam in the office to see if it was mobile. He said he couldn't tell because I was tense. The only other thing he could do right then was the shot. Me being a scardy cat, I didn't want the shot. But I decided it might help me and I was so wanting to get rid of the pain. The needle going in didn't hurt too bad. it was him injecting the medicine that made me scream my head off!!!!!!!! OUCH!!!! I took a minute to compose myself then I hobbled out of the office and into my car. He asked to see me again in two weeks to see if the shot had helped. The next two weeks I think I was in more pain then I was before the shot. I went back on October 2nd. I told him it didn't help at all. He said the only other thing we could do was manipulation under anesthesia or the surgery. We talked about it for a little while and we decided that I would feel more comfortable with having the surgery. I felt that manipulation would be a waste of time. So surgery was scheduled for October 17th.

The morning of surgery I was excited to finally be getting rid of my pain, even though I knew it would be a while before I could sit normally. My parents came up for the surgery ( I was living in VA at the time). I was on so much medicine that it made me sick. I threw up the day after about 5 times and the next day was a lot more. So they called me in some compazine for the nausea. My daddy left a day earlier then my momma did. She stayed to help my husband with supper and things. The Friday morning after my surgery everything was fine so she decided to make the 5 hour trip home. That night I began to feel really strange. Around 8:30 was when it all started. I was laying on my side on the couch when I realized I couldn't get comfortable. I thought it was just the couch so I went in the bedroom to lay down. He asked me where I was going and I said, "Just to lay down." After laying down on the bed a few minutes I realized what was wrong with me. My muscles wouldn't let me relax and I was tensing up. I walked back into the living room where my husband was and I told him that I knew what was wrong. So I thought the shower would help. He walked me back to the room and turned on the shower water. We walked over to the center of the room so I could get undressed. I started to walk and from my knee caps up my legs were "stuck" together and the bottoms of my feet pointed outward. I got scared because I couldn't walk. I wasn't in pain but it felt really strange. My husband asked me what was wrong and I started to cry because I didn't know. All I knew was that I couldn't walk. He got me to the bed and he called a friend who lived in the same building as we did. She ran over in about 3 seconds. By the time she got there my whole body was shaking, my mouth was drooping and I could barely open my eyes. She sat on the bed with me and tried to keep my arms still. The more she held me down the more I seemed to shake. Then My husband called my momma. He told her what was wrong and she told him to call the doctor. He called the doctor and he said it was a reaction the medicine I was taking and that it should go away. Soon after it got worse so he got ready to take me to the hospital. It was a task getting me to the car. We weren't far from the ER at all. Luckily, they weren't busy and they helped me right away. it took about one minute for them to get the IV in me. They were really fast that night. They didn't know for sure what was wrong because they hasn't asked me yet, they just knew I needed an IV. Soon after the ER DR came in and talked to my husband to find out what I was taking. When my husband mentioned the compazine the DR told him that was what was making me do the things I was doing. It turns out that I was having a distonic reaction. Visually it was like a mix between a stroke and a seizure. For me, I felt no pain, just a lot of uncomfortableness and tightness of the muscles and fear as to why I couldn't stop shaking. They gave me some medicine called cogenten. It worked almost instantaneously. I felt amazingly better. They just told me to stop taking compazine and I should be fully recovered in a couple of days. I went to the DR the next week for a checkup and told him we went to the ER. He explained that compazine effects the nervous system and that's why I had the reaction.

We decided to go home (NC) for a few days. We left that Friday. I was doing real good, just a lot of oozing from the wound. That Tuesday night (Halloween) I went to use the bathroom. After I while I looked down in the commode and it was full of blood. When I wiped, I had blood and blood clots on the toilet paper. it scared me. I called my husband in to help me get up then he took me in the room and looked at it. He told me it looked like it had come open. So we called the ER and they told me to come in to have it checked. The DR's looked at it and said to my husband, "Have you seen this?" And he told them he had just looked at it. The he went over and looked at it again. They said that it was open and that I needed to have a surgeon look at it the next day. They were a little confused to how it looked. They packed it for me and we went home. The next day we went to the doctor they referred me to. He said that it had split open but that there was only one stitch holding it together (The doctor used absorbable stitches). He snipped that stitch and it split open all the way down the where the bone was . . . .about 3 1/2 inches. he told me I needed to go back to VA ASAP to see my doctor and that he was going to pack it. I said Ok , because the nightn't realize how important my butt was to my walking until this happened. I was in tremendous pain. He started to pack it. I started to scream because it hurt like crap! I was in so much pain I couldn't take it. After about 15 minutes he finally finished. It was all I could do to walk. The next morning we left at 7 am so we could get back in time to go to the DR in VA. When I saw him he told me I had an acute infection. He told my husband that it would need to heal from the inside out and that he would have to pack it once, if not twice a day. He sent us home with a bunch of saline solution, gauze, long Q-tips, and tape. That night JR (my husband) was going to change the gauze. That began a long journey. He barely got 1/4 of an inch out and I wouldn't let him touch it anymore. We fought about it and I told him there was no way I was going to let him or anyone else do it. He was so upset for hurting me he cried. he called his momma and told her he couldn't do it. That someone else would have to. So we went to the ER, again. I was in a tremendous amount of pain. They gave me an IV and then some morphine. After about 10 minutes I asked the nurse when the medicine was supposed to start working. She said, "It should have already, do you still hurt?" And I said that I did. They gave me something else that was supposedly stronger but it didn't help either. They told me to go back to the doctor the next day. So we did, again. He said that I had to have it packed and that if I didn't it wouldn't get better. I was in tears of the thought of having to do that every day. he said that they could have nurses come every day. So we decided to do that.

The next morning at 8 am, the nurse came. My parents came back up to help JR with supper and for support. We went in the back bedroom so she could change the gauze. I laid down on the bed and she leaned over me to grab the gauze. I asked her if I told her to stop if she would. She said yes. She leaned over me again and I started crying and wouldn't let her do it. After about 5 minutes of trying to talk me into she said, " We won't do anything unless we have your permission." Then I told her I didn't want it done. But my husband chimed in and said that it had to be done and to let her go on and do it. She grabbed it and pulled about 1/4 of an inch out. I screamed STOP sooooooooo loud. the she remembered she needed her scissors and they were in the living room. So she went in there to get them My mama asked if she was done and the nurse said, "No, I barely got any out." So my momma came back there to help. The nurse started and I tried to get away so My momma had to hold me down. It was awful. My daddy had to leave because he couldn't take the screaming. Finally she was done. Then for the next few hours I was in tremendous pain. Then it would get better. Lisa was the first nurse that came to see me. I had several different nurses; Lisa, Diane, Joanna, Valerie, and Bev. Some days were better then others because the different nurses did things different from each other. When Joanna came she was awful. She was really nice, but she did the packing too slow. I remember one day before she started I told her that if I asked her to stop if she would. She said she would. She started the packing and I couldn't take it. I yelled at her to stop. She didn't stop. I yelled again..and she still didn't stop. Then I yelled, "You said you would Stop!" I started kicking. The I yelled at her, "You're too slow. STOOOOP!" But she wouldn't. I knew they weren't meaning to hurt me, but since they were the ones doing it, I screamed at them. After the nurses left it would start all over again . . . the next thing I knew it was time for them to be back.

I was put on antibiotics for the infection. Only after a week of being on it the doctor took me off, even though I had green stuff still coming out. He was asked several times to do a culture and he refused to do it. Even the nurses that came to see me said it would be a good idea. But he would not do it. I went to the doctor every Wednesday during the packing. We did the packing from November 4th to December 12th. I had gone to the DR for my regular visit and he asked me what I wanted to do. I wanted it closed up. I couldn't take the stress and the pain of having it packed every day. It was really taking a toll on me and my family. So he told me I could have it cleaned out and restitched or have a whirlpool treatment or keep doing the packing. So we took a few days and decided to do the surgery. it was scheduled for December 13th. it went well. He used unabsorbable stitches this time and thicker stitches. I went in December 28th to get them removed. I had about 15 stitches. He took them out and it fell open again. But it wasn't as deep as it was before the surgery. It was about 1/2 an inch. he told me to clean it out twice a day with the shower. he said, its gonna ooze some and its gonna bleed some but everything should be fine. He told me to come back in a month and it should be healed by then.

So we scheduled an appointment for January 26th. I went back and it was the same as far as the naked eye could see. He sent me home and said come back in three weeks. I went back and it was the same. So he gave me a cream called silvadene and told me to come back in three weeks and it should be healed. I used the cream for the first time and I had green stuff come out. So I called the DR's office just to see if that was supposed to happen. The nurse called me back and said that the DR wanted to see me to make sure everything was fine. I went in the next day and he said everything was fine. I still had green stuff coming out. So I didn't use it as often. I went back to my next appointment and the same thing. "It looks fine. Come back in three weeks and it should be healed." It wasn't. And I still had my original pain.

The Sunday before my next visit I had a problem with my wound. I was using the bathroom and it began to bleed tremendously. It was pouring out like water does out of a faucet. I had blood clots and it scared me to death because I couldn't get it to stop. My husband took me to the ER. When I came back for my next visit I told him about two days before and how much it bled. He said, "Well, I told you it was going to bleed." I said, "No, it was a lot of blood and I had blood clots, too." He said, "Well when you see blood on gauze its gonna look like a lot of blood." I said, " Listen to me, I didn't have gauze in, I was using the bathroom. The blood was pouring out like water out of a faucet." He didn't say much after that . . . he kind of stumbled around his words. Then he told me that he was leaving. I didn't know what he meant. But he said he was leaving that practice. I asked where he was going and he was hesitant to tell me. But he said Northern Virginia. I was very suspicious, because all of a sudden he was leaving. Then he told me, " Now it's mainly wound management and you might need to see a plastic surgeon who might could help. I can refer you to someone." The I told him I was leaving for a month while my husband was out to sea. He asked to see me one last time before he left. We made an appointment but I didn't go because I was here in NC.

I made an appointment to see my family doctor in NC for a second opinion. I told him about the bleeding I had had recently and he told me it was a blood pocket that should have been drained. He said it was odd that I was told to leave it with no dressing on it. He looked at it and said from what he could tell it looked ok but wanted me to put neosporin on it and come back in a week. The next week I went back to him. He said he wanted to refer me to a general surgeon who he felt could do a better job then he could.

The next week I went to a general surgeon. He took one look at it and said, " You've got a hole at the top of the wound, and there is a pilonidal cyst in there. We'll have to put you to sleep and cut out around it and stitch it back up. If we don't do that you will not heal and that's probably why you still have your original pain and it has been there from the beginning." He put me on a strong antibiotic to keep infection away and asked to see me back in two weeks. I went back after about two weeks and he explained how the surgery would work. He drew a picture of the wound for me and showed me where the hole was. He said they inject blue dye into the hole and watch where it goes. And where ever the blue dye goes, that is where the "bad part" is. They cut all of that out plus some and then sew it back up. We scheduled the surgery for April 11th. It was my third surgery for tailbone problems. I got all my records from the nurses, DR's visits, and ER. So many things were overlooked and I feel he neglected to do certain things so I am trying to sue him.

SURGERY UPDATE: While I was in the recovery room after my surgery, my husband and my sister came in and told me what the doctor found. They told me "he got it all out. It was the size of a tomato. he had to scrape all the way down the bone." I was so upset at my first dr. I started to cry . . . I was back at the beginning again and I was so angry. I could not believe how my other doctor could miss something like that. It really upset me. I was so tired of all this. After about another hour I began to come out of anesthesia. I really wanted to leave so they let me go home. The next two days were so amazingly different from the first days, even weeks after my first two surgeries. The difference as like night and day. I was able to walk, but very slowly. I felt great and didn't need much pain medicine. When I went back to get the stitches taken ut I was so nervous. I had about 15. He took them all out and it didn't fall pen. it was a miracle!!!!!!!!! All of the before would have not happened if y first doctor had found the cyst.

LAWYER UPDATE:

It is my opinion that lawyers are incompetent. The first lawyer I contacted told me I couldn't base a medical malpractice case on something that a doctor had just told me. I don't know what she was talking about, because I was basing it on what the doctor didn't do, that he should have. The second lawyer I talked to, wanted to take my case. But due to me being out of work since last October and medical bills, we can't afford to pay for the doctor's evaluation that is required to proceed for a medical malpractice case. So I decided to look for another lawyer and see if there was something else that could be done. I found another lawyer a few days ago and sent my story (all of the above this part). I got a letter today saying they could not help me, and they hoped I wouldn't be disappointed. I am so frustrated. I can't believe that you have to have almost $2,000 to sue a doctor for wrong doing. If we didn't have all the bills and things we could afford it, then again, we would have no reason to sue. I am very frustrated because I can't get any help and we don't have the money.

UPDATE ON ME:

I am doing fabulous. My original pain is gone and my wound is no longer open. I owe it all to my latest doctor and to the healing power of the Lord. Without that, I have no idea where I would be now. I still want to sue my doctor. As of now, I have a little less then two years to sue him. Once two years is up, I can't do anything. I have wanted so badly to call my first doctor and ask him if he has any idea what he put me through, but I know it won't do any good, plus, I don't know where he is. I have learned a lot from this ordeal. The next time I go to a doctor it will be someone I have been to before, and that I trust. I have also learned that I am not as strong as I thought I was and that I need to work on that. Today, I still get choked up when I think about what I have been through. I knew my husband loved me, but what he went through and did for me was amazing. I had so much help from him and he made me feel so loved. I know that everything that happened was not the doctor's fault, but the point is, is that he diagnosed me wrong, and failed to do certain test to determine the cause of the pain and infection. To anyone who has pain like I did, please talk to your doctor about the possibility of a pilonidal cyst. They don't show up on x-rays. I would hate for this to happen to someone else. If you are lucky, your doctor won't be as ignorant as mine.

Updated 2001-06-24




Pain caused by childbirth with short labor?

Jenny

I was very interested in Mary Bisago's article (March 2000) with regard to short labors possibly being a contributory factor.

I first experienced pain when I was expecting my eldest child twenty four years ago, but it disappeared after he was born, I subsequently had two other sons, although I do not remember having coccyx pain with pregnancies. My first labor was 8 hours which is relatively short for a first born, it was a normal delivery although there were some complications and my son was born with dislocated hips (which were thankfully rectified before he was 6 months old). My subsequent labors were very short, around 2 hours.

I am now 50 years old and have been suffering pain again for approximately four years, having read the ' What is coccydynia?' page I can relate to some of the possible causes, I am presently overweight although I have joined a weight watchers group because I thought this may be the reason I am suffering again. My GP prescribed Ibrufen but it did not help. The level of pain fluctuates from really painful to none at all, although a fall a couple of years ago may have aggravated the problem it was not the cause because I was already suffering pain.

I would be interested to know if any link has been made with women who have had hysterectomy's as I know of other ladies who also suffer and we have all had the same operation.

Updated 2001-04-25




Need a doc in Seattle, WA area

Jeri - j.js@verizon.net

I broke my tailbone for the first time when I was 14. It became abcessed and was a thoroughly nasty experience.

About 3 weeks ago, the day before I was to leave for a year ago planned 6 day Vegas trip, my office chair ran out from under my butt while I was leaning over to get something out of a cabinet.

I fell full weight on my tailbone on the hard chair mat. I have been in almost constant pain ever since.

The day after my return, I was trying to get caught up on the work I had missed and the dang chair did it again (seatbelts maybe?). Since I had to leave again in 2 days, I decided to see my doc and hope for some relief. She gave me the " we don't treat that, take tylenol and use a donut pillow" advice and I went sadly on my way. The second trip was even more difficult.

I am hoping that someone out there has the name of a good doc in the Seattle area or Edmonds area.

Thanks, Jeri

Updated 2001-11-25




Everyday is worse than the one before...

Jim Bugg

My wife has had a severe case of coccydynia for almost 2 years now. She's unable to sit or lay down for any more than 10 minutes at a time. She's unable to lay down and has been sleeping on the living room couch since the August of 2000 as it's the only place she can get comfortable enough to doze off to sleep. She needs to take painkillers every night just to help take the edge off of the pain so can doze off to sleep and even then is awake through most of the night trying to fight off the pain.

Since the birth of our son in November of 1999, her pain has increased more and more to the point now that it's almsot unbearable. She can't do even the most simple of daily tasks without basically being rendered a cripple for the rest of the day. We consider it a good day when she can go for a walk around the block with our 20 month old son.

When my wife was younger (10 years old), she fell on her tailbone rollerskating (tells you how old we are). She broke her tailbone, but it wasn't diagnosed as such. She complained of severe pains in her legs and lower back, but was told they were only growing pains and that they would go away. 20 years later at 30 years old, those pains have not only not gone away, they've stolen away her most precious time with our son and have almost confined her to the living room couch. With her immobility, she's unable to even get down on the floor because she can't get back up. We can't do regular things that we would normally take for granted because everything revolves around her condition. It affects us mentally, physically all those around us.

As with many people here, we have horror stories of visits with our "doctors" and "specialists". We've even had one orthopaedic surgeon tell us "it's not cancer, so ignore the pain and get on with life. Go do some exercises and you should feel better". When I told him that my wife was only 29 (at the time) and had been sleeping on the couch for a year and then asked if she had to sleep there for the rest of her life, he again stated that it wasn't cancer and yes, she would have to sleep there for the rest of her life. Simply astounding.

My wife also has another condition called MCTD (Mixed Connective Tissue Disorder), a derivative from the Lupus family that manifests itself in very painful, arthritic ways. Her joints will get very sore and swollen and her skin will feel like it's on fire. If you'd like to read more about our situtation, I made a website called www.CureMyWife.com. Everyone here is more than welcome to visit and post their story or advice in our Forum. We all need support, so the more the merrier.

We've only now been able to get an appointment in September with a doctor who will see her about her coccygodynia. The hardest part is getting people to believe you as it doesn't show up on any regular testing methods. This docotor has done coccygectomy's before, so we're hopeful that he can steer us in the right direction.

Thank you and God Bless,

Jim Bugg

www.CureMyWife.com

Langley, BC Canada

Updated 2001-08-25




Cycling accident in 1993. Coccyx removed 1999, now 90% better

Jon Miles - contact me here.

The short version of my story

In 1993 I injured my coccyx in a bicycle accident. At first I tried to ignore the pain and carry on with my life as normally as possible, expecting my injury to heal by itself.

When I eventually went to see my doctor, I was put on oral NSAIDs (painkillers), with no effect. I had an x-ray, MRI scan, examination by colorectal surgeon. I had physiotherapy, which made it worse. I tried TENS, which had no effect.

I was sent to a pain clinic, which recommended NSAID suppositories and anti-depressant drugs to dull the pain. They did dull the pain, so the doctor told me to sit longer, which made my problem and my pain worse.

I was given a semi-permanent nerve block (freezing nerves). It worked, but only for 3 days. I had corticosteroid injections, which reduced the pain for a few weeks, then it came back.

At that point I felt that I could not continue working in my condition. I did not want surgery, but felt that I had no alternative. I had the coccyx removed in 1999. Recovery was very gradual. It took about three years to reach 80% better than before the operation, and a couple more years to reach 90% better.

What I wish I had done at the start, knowing what I know now:

I would take the problem seriously right from the start:

  • visit the doctor straight away, and ask for an immediate appointment with an orthopedic specialist to get the right tests done.
  • take some weeks off work to allow it to heal
  • avoid sitting whenever possible, use a coccyx cushion if I had to sit (see section on coping with coccyx pain)
  • use drugs as little as possible - if they mask the pain, you sit longer, and may make the problem worse

See treatment of coccyx pain. The first treatment I would try would be manual therapy from one of the therapists who have had success with other patients (see list of doctors and other specialists).

If manual therapy was not successful, I would not bother with corticosteriod injections, as these do not give long-term relief. As I live in southern England, I would travel to Paris to see Dr Maigne for investigation and treatment. Since my pain was caused by a direct injury to the coccyx, I believe I would be a good candidate for surgery.

If I was still in pain a year or two after surgery, I would try tri-cyclic anti-depressant drugs to dull the pain. If that was unsuccessful, I would look into the possibility of using spinal stimulation to avoid feeling the pain.

me with my coccyx Me and my coccyx

Background I am a physicist living south of Oxford, England. I was born in 1949, and I am married with two grown up children.

1993 I rode my bicycle over a drop, lost the pedals, and fell heavily with my coccyx on the tip of the saddle. It was very painful, especially when sitting on soft seats. However, I altered my life as little as possible, expecting the pain to go away in time.

After 3 months the pain was less than at first, but it was painful when sitting for a long period. I had no pain when standing, walking, lying, defecating. It was no longer improving, so I visited my doctor. When he manipulated my coccyx it was uncomfortable, but did not hurt as much as sitting. The doctor advised me to try oral NSAIDs (painkillers). They gave no improvement.

1994 I found myself sitting in awkward positions (like on one buttock) to relieve the pressure. My back was becoming very painful. I visited a chiropractor, who relieved my back pain, but had no effect on my coccyx pain. I went back to my doctor, who referred me to colorectal surgeon. He was unable to find the cause of the pain, and suggested referring me to an orthopaedic surgeon.

1995 The orthopaedic surgeon told me this type of pain is difficult to investigate or treat. He ordered an MRI scan - which was normal. He suggested I try a physiotherapist. My physiotherapy started with ultrasound and gentle manipulation of coccyx. The treatment was interrupted by a holiday: walking, cycling, almost no sitting. At end of the holiday, the pain when sitting was greatly reduced. I returned to work and to physiotherapy. The physiotherapist pressed harder on my coccyx, resulting in a sudden return of pain - as before the holiday. I had x-ray and ultrasound investigation of abdomen - normal. I tried commercial TENS equipment - no effect.

1996 I found a paper in the Lancet [a medical journal] quoting a 70-80% success rate in Leicester, treating coccydynia with cortisone injections and manipulation. I showed it to my doctor, who referred me to the local rheumatology clinic. The rheumatologist told me the Leicester treatment might help, but it was not certain. He had no anaesthetic list, so suggested it should be carried out by an orthopaedic surgeon. My doctor referred me to the local orthopaedic clinic. I saw a different orthopaedic surgeon from before. He was unsympathetic, and could not find any notes about me or the letter from the doctor. He suggested I should be referred to the Oxford Pain Relief Unit.

1997 I went to the pain unit, where the doctor told me the damage must be healed by now, and only the pain is left. [This advice was quite wrong, though I did not know it at the time. It is clear from research that a coccyx joint may be damaged, and keep dislocating for years.] The doctor suggested trying pain treatments in turn, starting with milder ones. I found that NSAIDs in creams or gels had no effect. NSAIDs in suppositories had some effect. Amitryptyline had some effect.

1998 By now I was using both NSAID suppositories and amitryptyline, but the pain level rose back to what it was, and more, and lasted longer. The pain unit doctor gave me an injection of local anesthetic around the coccyx to find out whether that gave temporary relief, which it did, showing the coccyx was the cause of the pain. My pain on sitting was now preventing me from sitting down at all at work. The pain unit put me on a pain management course, which gave some help in coping with the pain. The doctor gave me cryoanalgesia (freezing the nerves). This relieved pain, but effect of it wore off after 3 days.

The drugs had not helped me, and the side-effects were very unpleasant. I decided to come off drugs. The pain was not much worse, and I felt much better without the drugs. I asked my GP to refer me to one of the doctors in Leicester who was an authors of the medical paper I had found earlier. He did so, and the Leicester doctor gave me a corticosteriod injection in his office. Initially the pain was worse, then reduced after 5 weeks waiting.The doctor in Leicester told me that he would find a surgeon in Oxford to give me any further injections.

1999

An Oxford surgeon gave me an a corticosteriod injection with manipulation under light general anesthetic. Again the pain was worse initially, but it reduced 6 weeks after the injection. The pain was now about 30% of the level before the two injections - nearly back to how it was before I took amitryptyline. I started sitting for short periods. I took my family out for a meal! I increased sitting, up to 2 or 3 hours a day, and the symptoms got worse again - back to how they were before the injections. I had to reduce my sitting again, just for travel and meals. After several months of standing all day at work, my feet became very painful. I started kneeling on a chair part of the time, and took a camp bed into the office, to lie down when I was reading. I was also getting what they call 'wind-up pain' at the pain clinic. It is a hypersensitivity of the skin to touch or pressure. I got it on the buttocks or hips at different times. I used to have to be careful about the clothes I wore and make sure there were no wrinkles in the sheets I lay on.

I felt that I had now tried everything short of surgery, and could not continue the way I was living. My life was falling apart, and I would either have to have surgery or to stop working. My orthopedic surgeon agreed to surgery. I thought that there was a good chance of success, but I realised that there are no guarantees. My surgeon has removed 4 coccyxes before, all resulting in reduced pain.

4 days after surgery

I'm now lying at home on the bed on a 'pressure relief' mattress topper (eggbox foam), with the cat asleep beside me. My wife's at work in the junior school nearby, our daughter's at school and our son's away at university. And I'm lying on my side exposing myself, to let the air get to the wound. So long as I lie like this and keep taking the drugs (diclofenac suppositories and high strength coedine/paracetamol pills) the pain's not bad (and sometimes disappears altogether).

My surgeon (James Wilson-MacDonald) had told me that the operation was not technically difficult and takes about half an hour (he has done 4 before). He said they give a shot of painkiller and one of antibiotic before they start.

I woke up in the recovery ward plumbed in to a saline drip and a pain pump (one of those devices where the patient presses a button to get a small shot of morphine). I had to press it 15 times to quell the pain. My wife and daughter came to see me in recovery. I kept dozing off while I talked to them, and being woken up by an alarm because my pulse dropped below 40. The night was fairly restless, but I felt pretty good the next day and could get around trailing my drip-stand behind me. The surgeon said it had gone well, and if I felt OK I could go home, so I did.

Since then I've been lying around. I get a bit of pain sometimes, especially if I'm late with the drugs. Yesterday I toddled slowly down to the local health centre for the nurse to check my wound. Normally it is a 5 minute walk, but it was more than 10 now. She told me it looked OK, which was a relief as I had been worrying about wound infection.

I had asked the surgeon if I could have the coccyx, and he gave it to me in a jar of formalin.

Pictures of my coccyx after removal - from back and front before cleaning . . . .

coccyx from back coccyx from front

and after cleaning . . . (all ruler markings in centimetres)

coccyx from back after cleaning coccyx from front after cleaning

10 days after surgery

I'm making progress. I feel like I'm healing up inside now, as I have been able to decrease the medication and I feel more mobile. I caught myself taking the stairs two at a time yesterday. I tried sitting down for 10 seconds, and it didn't hurt. But I'll leave it another week or so before I try any longer.

I was worried about the external healing, as the wound is still weeping and there is a break in the skin along part of the join. But I saw my local doctor today, and after he checked me he said it looked fine for 10 days. He said cuts in that area may take a long time to heal, but the skin there is very resistant to infection (it has to be). To help it heal he suggested salt baths, drenching it using the shower head, and drying with a hair dryer.

21 days after surgery

Progress is slow but steady. I have now given up the pills during the day, and just have the diclofenac at night. This is less medication than I was on before the op, but then I was going in to work before. It hurts to sit down, but this is an immediate pain due to the surgery, not like the slow growing deep ache before. Only time will tell whether that has gone. I now sit about 10 minutes a day to eat dinner, using a wedge. When not sitting I sometimes have some pain, sometimes just a pulling sensation, and sometimes nothing! One kind of pain that went a few days after surgery was what they call 'wind-up pain' at the pain clinic.

I went swimming a few days ago (I checked with the doctor first). Before the op I used to go once a week and swim 40 lengths (1000 metres), as the only exercise that didn't hurt my bum or my aching feet, after standing most of the day. (My feet still ache at times - I hope I haven't done them any permanent damage.) This time I did 10 slow lengths, mostly using my arms, with breaks for recovery. I had to go to bed early that evening. That's another slow process - getting my strength back. But I suppose that's just having an operation at nearly 50.

I'm thinking of going in to work part time in a week or two. Of course things are piling up there, and there are some things that it is more trouble to pass on to someone else than to do yourself.

1 month after surgery

After 3 weeks the pain had gone down enough so that I could give up the last of the medications, the diclofenac suppositories. I felt pretty good for a week after, and was optimistic that I would be back at work soon. However, after 4 weeks, the pain got worse again. I then remembered that the diclofenac took about a week to work after I started taking it, so I suppose the increase in pain now is due to a similar delay on stopping. However, the pain's not bad, and it's nice to be off drugs, so I'm sticking with it.

I think at this stage the pain is still worse than before the operation, though it is difficult to be sure, as before I was taking medication and sitting. I am seeing the surgeon in a couple of days, and if he gives me the OK I will be going back to work 6 weeks after the op. My employers promised to get me a sit/stand desk (one that you can move up and down) so that should help. Even so, I may need to start taking the drugs again when I am back at work. The medical papers say 3 to 5 months average time for the coccyx pain to go after surgery, so I must try to be patient. (AAAGH! My patience and endurance has been strained to breaking point so many times over the past year, I should be used to it now.)

2 months after surgery

At two months I feel a bit less pain each week, and I have now passed the point where I am better off than before the operation (Hooray!). Progress is still slow but steady. I was surprised at how long it took me to get my strength and stamina back. Even now I feel that I am only about 80% of the way there. But I can manage 1000 metres (40 lengths of the pool) again now.

When I visited the surgeon for a check-up, he said the tissue around the area was still 'indurated' - which means stiff. He's right - if I feel it, the muscles either side of the wound feel as if they are tensed. Apparently this is normal, and goes off. I have now found out that the gap in my scar was due to the 'dissolving' suture not dissolving. At 6 weeks after the op, a nurse fished out an end, and pulled 6 or 8 centimetres of suture out. It went all the way up the scar, and after 6 weeks inside me it was still like a length of nylon fishing line. According to the nurse, surgeons get the impression that these dissolving stiches work better than they really do, because nurses keep removing the bits that don't dissolve.

I've been back at work for 3 weeks, mornings only. I still don't sit down at work (I didn't before the op). However, they're supposed to be getting me a sit/stand desk - one you can move up or down, with everything on it - so when that comes I will be able to alternate sitting and standing. So, I am not out of the woods yet, but I'm going in the right direction.

3 months after surgery

Well, it's continuing slow but steady improvement. I can now sit on an upright chair, leaning forward, for a couple of hours without any increase in pain later. That is a great improvement on how I was before the operation. I am also in less pain when not sitting now, 0 to 1 on a scale of 10. I'm taking it very slowly to increase the sitting time, because of all the times when sitting too long left me in increased pain for days after.

The worst thing is still driving a car - that is still worse than before the operation. The operation seemed to move the pain back and up. But it is still decreasing. Mind you, I haven't tried driving a car for the past 10 days, because my car was stolen from an Oxford car park. I'm surprised any self-respecting thief would bother with it - it was a boring old family car. The police found it, damaged, and the insurance company have written it off. Being without a car for a few weeks doesn't bother me too much, as I go into work in a car pool, and we can get lifts or buses to most places.

I went to see the surgeon yesterday. He was pleased with my improvement, and told me that I would probably go on improving for a year after the operation. The more I hear about this operation, the more I realise how slow recovery is.

4 months after surgery

It's been a month of ups and downs for me. I got a Volkswagen Golf, by the way, and its firm seat felt quite good without a cushion, but I didn't dare try it with no cushion for more than 5 minutes. At the beginning of the month I was feeling better, and started to cautiously expand what I did. Everything seemed to be going fine, till I drove 20 minutes to pick my daughter up from the railway station. It felt OK at the time, but I suffered extra pain for a week after it. Very depressing. This delayed reaction makes it so difficult to know whether you're doing any harm.

I decided that the cushion on top of the car seat was raising my bottom up so that the bulge in the back of the seat (intended to fit in the small of your back) was pressing on it. So I got the knife out, and cut a plug of foam out of the car seat to turn it into a tush cush (details here). That seems to help. A week ago I drove into the local hills (10 minutes each way) and went for an hour of mountain biking - which was nice! It's strange - no-one else I know with coccyx pain can ride a bike, but I have no problem.

After all that, I think my situation is much the same as it was a month ago - which I reckon is about 50% less pain than before the operation. Which is a great improvement, and well worth going through the operation for, but it would be sooo nice just to sit down without pain or worry. You know just how I feel!

5 months after surgery

Three weeks ago they delivered a sit/stand desk and a fancy office chair for me at work. (4 months after the operation! - but they got them, which is more than many employers would do. The chair was about 750 dollars and the desk about 1500 dollars. I'm glad I wasn't paying.). At that point I started staying all day at work - up to then I was working at home in the afternoons.

I find the desk more help than the chair. It is one where the weight of what you have on the desk is balanced by springs, and you unlock it and pull it to any height you want - it only takes a few seconds. It is made by EFG in France, who have a small web site which does not show the desk. I try to vary my position often, changing from standing to sitting to kneeling (on the base of a backless chair) to lying. I think that changing position and stretching exercises help to stop you getting locked into these awkward positions.

I get a stiff back from time to time - I think it's because I'm more comfortable leaning forward, so in a meeting I will be leaning on my elbows all the time. I go to a local osteopath, who sorts it out. I tell her to keep well away from the (ex-)coccyx area.

I find I can avoid any real pain pain in the bum - the most I get is discomfort - if I stick to my rules. These are:

  1. Take the diclofenac daily (I stopped this for a while before I went back to work, but I had to restart it).
  2. Sit only on a coccyx cushion or leaning well forward on a firm seat.
  3. Don't sit more than 20 minutes at a time.
  4. Don't drive more than 10 minutes at a time.
  5. Do the stretching exercises daily given to me by the Pain Clinic (these are not coccyx-specific, but general ones to avoid back pain)
  6. Keep fit by exercising daily - walking/swimming/badminton/running/cycling

It's not easy sticking to these week in and week out. But if I break one of the first 4, I am punished with a week of extra pain. I feel that I am a bit better than last month, but change is very slow now. But I can get on with my life again, which was impossible before the operation.

6 months after surgery

Progress is slow, but despite ups and downs it's going in the right direction. At first after the surgery I could feel an improvement each week, now it's each month. I can now drive for 20 minutes at a time! This is important for me as that's how long it takes to get to work. I'm in a car pool, but it's difficult if others are away. I've put a slab of foam rubber on the back of the car seat from my waist to my neck, so my bottom is not touching the back of the seat at all. And of course I cut out a slot in the base of the seat.

In the months before the operation I was feeling desperate - as if it was only my will-power keeping me going, and I was hanging on by my fingertips. I decided that if the operation didn't give me any relief, I would have to give up work. Now I feel much happier, and I can face the future.

7 months after surgery

I spent half of the past month feeling depressed, because I had a flare-up of pain which didn't pass off after a week, as it usually does. It's not that the pain is intolerable - I still felt better than before the operation. It's that it's going the wrong way. But half way through the third week, I realised something different was happening - sensation was returning to areas around the scar that had felt dead since the operation. I had some strange sensations as the feeling returned. Sometimes I had stabbing pains, and part of the time I felt as if I had a book stuck between my buttocks. And I found that if I ran my fingernails over one patch of skin, it gave me a feeling like nausea. Wierd.

Anyway, the flare-up of pain has passed off, and my bum feels more like normal than before, though the process of feeling coming back has not finished yet. I'm taking it as a good sign that the tissue is still healing itself. The area without feeling before (around the base of my spine) was also the area where pressure for any length of time would set off a flare-up of pain.

8 months after surgery

The odd sensations I got as feeling was coming back carried on for more than a month altogether. Since they stopped, a couple of weeks ago, I haven't had any flare-up of pain that lasted more than a couple of hours. That's a great improvement on before, when I used to get flare-ups lasting a week sometimes.

Mind you, I am still avoiding anything that I think might set it off again. I still avoid sitting down when I don't have to - I am typing this kneeling on a cushion, as I have done for more than a year now. And I am very slowly weaning myself off the drugs - I don't want to do it too quickly in case it causes a reaction. This problem has made me a very cautious man!

So, I'm still getting better slowly. It's difficult to put a percentage on it, after so many things have changed. I would guess I'm 60 or 70% better off than before the operation. I'm still hoping for more, but I could live with this without complaining.

9 months after surgery

Last month I said that I was avoiding anything that might set off the pain again. Then the man I car-pool with had to go into hospital for an operation to repair a disc in his back. The first week I drove in to work 3 times and was fine. The second week I drove in 4 times and was fine - until the 4th day, when a flare-up started again, and lasted a week again.

So I decided to get a motorbike. In Britain you have to take a day's training before you can take a bike on the road, and then you're limited to 125 cc until you've passed your test. I took the training, and bought myself a little Honda C90 (does that count as a motorbike?). It has a flat seat so I can sit well back and lean forward. No problems. I'm feeling pretty good again now.

10 months after surgery

For the past month I've been puttering around on my little Honda C90, to avoid having to sit in a car seat. It's served me well, even if it is a bit feeble. If I need to keep on using a motorbike I'll get something more powerful (or convert the driver's seat of my car to a motorbike seat?). The past week or so I've cycled in to work several times. My route is cross-country, and in the winter it's too muddy, but it's dried up now and it's a joy. Once I get out of town I'm on bridleways and little lanes, and often the only other traffic is the horses being ridden out of the stud farms and racing stables to go for their exercise.

I've still been improving. The area with no sensation around the top of my scar has shrunk again. I can now sit for a total of 3 or 4 hours a day if I don't sit back. But I don't sit if I can avoid it, as it can get tiring, avoiding sitting back. I have had about 6 weeks with nothing more than occasional discomfort now. But a couple of days ago, when we had some friends round, I set off a minor flare-up. I was lying across a bean bag (if we didn't have guests I would have been lying on my side on a setee). I must have been careless in the way I lay, and when I got up I knew something was wrong. I get a strange tingling irritation and hypersensitivity around the area. I think it must be due to the minor nerves being cut during the surgery. It's nothing like the pain I had before surgery. Still this flare-up has been less than previous ones, and seems to be fading faster. Two steps forward and one step back, but I'm getting there slowly.

11 months after surgery

I try to avoid driving for longer than half an hour, because that has caused a flare-up of pain in the past. I wasn't sure if it still would, but I wanted to be careful. But I was caught in a traffic jam, and found out that it still does cause a problem. I must stick to my half hour.

On the other hand, I have been sitting longer. I find that on a reasonable padded upright seat I no longer need a coccyx cushion. I attended a two day meeting that meant sitting down for 7 hours each day. Of course I would have stood up or left if I found that it was causing a flare-up, but I was fine. Except that I was pretty tired - I was leaning on a table or sitting straight upright all the time, never leaning back. So I was pleased with myself. I am still not sitting if I can easily avoid it, but I feel I don't have to worry any more about sitting up.

I also did a bit of rock climbing and abseiling this month. It's 30 years since I did any climbing that needed a rope, and I've never abseiled before, but the chance came up to have a go under the guidance of a professional, so I took it. It was a bit tense walking down the rock backwards, but I was tied on well, and it was a really good experience.

I hope you're feeling well, and thanks to everyone for their good wishes. The kindness and support I have had throughout this saga have made a big difference in keeping me going. Keep smiling!

2000-05-17 - 1 year after surgery

It's a year today since my operation, so I will compare my situation now with what it was before the operation.

Before the operation:

A year ago, I had tried all the remedies I knew of, and they had either not worked or were only temporary. I was on 100 mg diclofenac suppositories and 8 Remediene Forte tablets a day. The remediene, which is a narcotic opioid, had strong side effects, including constipation and muddying my mind. The drugs masked most of the pain, but I had some minor pain nearly all the time. I avoided sitting whenever I could (which led to painful feet) and did not drive for more than half an hour. I felt that was getting no enjoyment out of life, lying in a daze most of the time I was not working. I felt I could not carry on working like this, and would have to give up my job if I could get no improvement in my condition. Having the operation was the only alternative I could see to resigning my job.

One year later:

Now I am on very little medication: a low dose of prothiaden which may or may not be having any effect. I can now sit upright or leaning forward for 7 hours a day if necessary, but I still cannot drive more than half an hour. Normally I don't have any pain, just occasional discomfort. My life is mostly back to normal (I can go out for a meal, for instance), but travel remains difficult. I use my motorbike, a train (sitting where I can lean forward, or standing) or get a lift from friends or use a taxi (lying down in the back of a taxi causes some surprise). Putting a figure on the difference from a year ago is very difficult. My guess is 70-75% better.

2001-08-17 - 2 years 3 months after surgery

Change has been slow over the last year. First of all, following the recommendation of the Pain Relief Unit doctor, I increased my dose of the tri-cyclic anti-depressive Prothiaden (dothiepin) from 25 mg to 75 mg a day. It has a side effect of making it hard to wake up and get going in the morning, which wore off after a couple of months. It didn't have any noticeable effect on the frequency of flare-ups.

Sometimes a flare up is caused by something obvious, like having to sit somewhere uncomfortable, and sometimes there is no obvious reason. These flare-ups are not particularly painful, though they are distressing. The skin on the back of my hips becomes hypersensitive, and the general area of the coccyx uncomfortable. The only way I can shake it off is by avoiding anything that causes any pressure on my buttocks or back for several days.

I can sit leaning forward in meetings etc, if I have a good cushion, for a couple of hours at a time. But unless the seat is just right, I notice that my thighs get uncomfortable and inflamed quite quickly, and that this can lead on to a flare-up. I didn't want to go back on to anti-inflammatory drugs, so I decided to try a remedy that has been proved effective in arthritis - another inflammatory condition. Fish oil containing omega-3 oils has been shown to improve arthritis. I was already taking 3 grams a day of fish oil (containing 1 gram of omega-3 oil) on the recommendation of Sally Cowell, and on the recommendation of a colleague of my wife's who gets arthritic pains. After reading up the literature on arthritis, I increased my dose to 3 grams of omega-3 oil a day (10 large capsules each with 1000 mg of fish oil in, as the fish oil is only 30% omega-3 oil). I have been taking this for 9 weeks now, and the medical papers say that improvement takes 12 weeks to show, and can increase in effect over a year. So I don't know yet how effective it has been.

A few weeks ago I had my last visit to the Pain Relief Unit in Oxford. The doctor told me that the fact that the hypersensitivity no longer appeared on the left was a good sign. He accepted the use of the fish oil as reasonable, and suggested that I consider taking 1 gram a day of glucosamine as well, as trials have shown that this is better than placebo in reducing inflammation. I have decided that I will wait a few weeks before trying this, to see the effect of the fish oil first. (The glucosamine did not help.)

My wife and I went on holiday to Belgium recently, me carrying my cushion everywhere with me (now just a plain firm foam cushion). All the travel was by train. I found I was able to sit out on the pavement cafes for a couple of hours every night, and travel by train with no problem.

Over the past year, feeling has been gradually returning and becoming more normal in the area around the scar, particularly on the left side. Over the past couple of months, the flare-ups have been only on the right side! And I can go a couple of weeks between flare ups sometimes. To sum up, I have had improvement over the past year, but it has been very slow. I now reckon I'm 80% better than before the operation.

2002-11-03 - 3 years 6 months after surgery

It is now nearly three and a half years since I had surgery to remove my coccyx. Recently my wife and I had two weeks holiday in the Peak District (Derbyshire, UK), mostly walking and cycling. At the end of this, I found that my remaining pain was substantially reduced - maybe now 90% improvement after surgery. But after two weeks back at work, I was back to how I was before the holiday (80%).

It is difficult to know why I had the improvement and why it later disappeared. Comparing what I did on holiday with what I do at work, there are not great differences. On holiday I walked and drove more than when at work, cycled and sat about the same, kneeled less.

There are a couple of things that I find very helpful to keep the remaining pain under control. One is fish oil capsules, as used for arthritis. I take 9 a day of 'EPA fish oil concentrate 1000 mg', which corresponds to nearly 3 grams a day of the EPA and DHA that reduce inflammation. And I take a low dose (75 mg a day) of Prothiaden (dothiepin), a tri-cyclic anti-depressive drug which has a side-effect of dulling chronic pain. Doctors usually prescribe another tri-cyclic, amitryptyline, because it is cheaper and has been tested more, but it has worse side effects than dotheipin. All the anti-depressives take a few weeks to work, and the side effect of feeling drowsy in the mornings is worst in those first weeks.

2004-02-15 - 4 years 9 months after surgery

Not a lot of change over the past year or so, except that I have reduced the dose of Prothiaden to 25 mg a day, without increasing the pain. I continue to avoid sitting when I don't have to, but sitting for a few hours at a time is no problem, so long as I can lean forward. If I have to lean back for a long time, it causes strange, unpleasant sensations on my back and thighs, which can persist for a day or two. I attribute this to nerve damage.

If I stand still for too long, my feet hurt, and carry on hurting the next day. I think that this was caused by standing all day for months on end before my operation. So long as I make sure that I avoid the behaviours that cause problems, I don't suffer any pain, and only occasional discomfort.

2004-09-19 - 5 years 4 months after surgery

After reading the book The Biology of Acupuncture, by George A Ulett and Songping Han (see the Acupuncture and electro-acupuncture page), I bought an LY257 stimulator. After using it for a couple of months, my pain level reduced significantly. Before using the stimulator, the pain level had been 80% better than before the operation, and improved to 90% better. The timing of this improvement could be coincidence, of course, and I might have got better without the use of this device. There is no way to tell. But I will, of course, continue to use it, hoping that it caused my recent improvement, and that it could produce further improvement. I have stopped using any drugs, but I still take fish-oil.

2007-07-03 - 8 years after surgery

I am still at about 90% better than before surgery. I do not take any drugs regularly, but long journeys can cause me discomfort, so I take painkillers beforehand. I avoid sitting when I don't have to, but I am alright in meetings of a few hours, or going out for the evening to a pub, restaurant, etc. At work I normally alternate between standing (I have a sit/stand desk), kneeling, sitting and lying on a camp bed behind my desk.

2015-09-27 - 16 years after surgery

I get a bit of neuropathic pain occasionally (that is, pain that comes from the nervous system itself, not signalling any damage to your body), in the form of a tingling pain across my lower back. It's not bad, discomfort rather than pain, but it's worrying, as I know it will get worse if I don't avoid sitting altogether for a day.

A couple of months ago I had a flare-up of this pain, that wouldn't go away even when I avoided sitting for a week. I found that using a TENS machine helped a lot. First it gradually reduced that tingling pain until it disappeared unless I sat down. Then I found that if I wanted to sit, I could sit for up to half an hour without setting the pain off, if I had the TENS running (electrodes placed either side of where my coccyx was) all the time I was sitting.

Note that this may not help for normal pain, and blocking the pain of, for instance, a dislocating coccyx, to allow you to sit for longer could make the underlying problem worse.

2018-09-30 - 19 years after surgery

Update about neuropathic pain.




Burning sensation in the tail bone area

Jo -  LJOEDOVE@aol.com

My husband has been suffering from a burning sensation in the tail bone area for months. One colo-rectal doctor said he had a rectal fissure and suggested repairing this, but not removing the tail bone. He said removing the tail bone was an old procedure and that he rarely performed this surgery any more because the results were usually not good. I might add that this doctor said there was no pilonidal cyst.

My husband had the fissure repaired but still had the pain or burning sensation as he describes it. He next went to a surgeon who said there was a pilonidal cyst and just in case the pain was not coming from it, he would remove the tail bone just to be on the safe side. After this surgery, he developed an infection and it took months for the incision to heal.

It has now been about a year, and he still has this same burning sensation worse than ever. He hurts now when he is standing. It was only hurting when he was sitting. He says this burning is in the area below where his incision is. He feels like it he could take a knife and split that area he would feel better. I might add that there was no redness, swelling, or drainage to even indicate a pilonidal cyst before he had the surgery. Since his incision has healed, every thing on the outside looks normal. I would like to know if anyone has had a similar problem. He is very discouraged.

Thanks, Jo

Updated 2001-08-25




Doctor said operation could cause loss of use of bowel and womb

Note from Jon:

What Joanne was told by this doctor is not supported by the evidence. The results of medical trials covering more than 200 coccyx removal operations all over the world did not result in any of the patients losing the use of the bowel or womb after surgery.

Joanne - joannemcclellan@amphenol.co.uk

I'm Joanne I fell over and dislocated my coccyx, after about two years I started to feel discomfort by my coccyx. I went to the doctor who referred me to the hospital. I had physio for about a month, this did not work so I was referred to a surgeon. Dr Kisiri told me last Dec that he would put me on a waiting list to have my coccyx removed, this being the final remedy for the pain. He told me that there would be a lot of blood loss and a chance of infection. He had only ever done two other cases before. I asked if they were ok now. He said fine.

I finally got an appointment for 24th July 2001 after writing a letter to Dr Kisiri asking about nerve damage and the birth canal and if the bone would puncture my bowels if I ever fell or rode a bike. (my bone is dislocated 45 deg angle towards my bowels.) My boss prompted me to ask about the nerve damage after talking to his osteopath. I went along and after 2 hours of waiting I was taken into a room where there sat 3 doctors, not one English one, and two nurses.

The main doctor asked me if I knew the pros and cons of the operation. Yes, I said and repeated what I had been told. "You know it is 50% chance of whether it will take the pain away and there is nerve damage that will affect your muscles", the Doctor said. "No - I was not told about that, what muscles?" I said.

"Do you know that your bottom muscle is attached to the coccyx and you could lose the use of your bowel? And if you are a woman you could lose the use of your sexual organs?" I think he meant womb, so you could end up with it prolapsed. Plus the coccyx affects the birth canal; if it is there, dislocated, it could get in the way of the birth and if you haven't got one you could still have problems. I was not told any of this in December.

I am 34, just married, and if I had been told these problems last year when I was spoken to I would have told him not to bother putting me on the list and I would put up with the pain. The Doctor I saw yesterday said that it was all in my notes and that I had been told all about this. Anyone can write something down and not tell someone. If he had told me this last year do you think I would be sitting in front of them in awe that they were going to take my pain away without any problems? I don't think so.

So I have decided not to go ahead with the op and wait for a break through of new surgery or information on this op in years to come. I will also go private as you get treated with respect and not called a liar. That Doctor has wasted my time, the doctors times and National Health Service money. He tried to cover up the other doctors mistakes of not telling me everything.

It seems from reading the e-mails that most males come out of the operation ok, but us women have more problems. In the long run I don't think surgery takes the pain away. Most people are still not sitting properly.

I think I'll put up with the pain I have now and sitting awkwardly rather than going through the pain of surgery and end up with more complications and pain than now.

Updated 2001-07-28




Self inflicted bruised coccyx

Jon Exley

I bruised my coccyx in April this year, while playing soccer with friends. I'm 26 and it has to be my most painful experience yet.

I really didn't think I would fully recover, but two or three weeks later I was back to normal, and my whole back felt stronger than ever. This wasn't acheived by anything more than regular exercise and common sense. I haven't experienced a relapse - but I'm always cautious and try to exercise every day.

I believe it was a combination of factors which contributed to my injury - all self-inflicted - sitting too long in front of my pc at work, snowboarding falls, soft bed, not warming up enough before sports, and heavy drinking the night before!!

I have now learnt my lesson, but I'm sure I'll suffer again in the future.

Updated 2001-10-28




After trying many treatments, an unusual manual therapy cured the pain

Julie jams007b@hotmail.com

Dear Jon,

I found your web site a few months ago when I was in the midst of an extremely frightening and painful bout with a painful tailbone. I am writing to you with a story of healing, and the events that lead up to it... as I think your web site could use such information.

Briefly, my problem began about September of 1999 for no apparent reason. I was doing a "temp" job where I sat sedentary for the whole day in front of a computer. Although I was aware that the chair I was sitting in was pretty horrible, since I was only at the job temporarily, I didn't want to make a fuss. At any rate, by the end of the day I started to notice that my tailbone was numb. To make a long story short, as each week passed the problem got worse until eventually it was painful to sit. Consequently, as soon as I was able, I either stood or laid down, in order to take the pressure of the tailbone by sitting. After about 6 weeks of laying on my couch in the evening, I could no longer lay on my back. So I started laying on my side, but soon that was uncomfortable as well as I felt this tremendous pressure around my tailbone and lower back area/rear end. All during this time I kept going to my doctor for relief. My doctor performed numerous test, x-rays, etc... but finally told me she had absolutely no idea what was wrong with me, or what to do with me other than refer me to an orthopedic surgeon to possibly have the tailbone removed. This frightened me tremendously so I started to do research on this apparently rare problem. I found your web site, and one other, and quite frankly, after reading some of the messages posted, I was even more terrified than before. After seeing an orthopedic surgeon, who advised me strongly against even considering surgery to remove the tailbone (he said I would probably be worse after surgery), I began a quest to heal myself and find answers to this puzzling and painful condition.

I tried acupuncture, which gave me some help in coping with the pain, but did not heal the condition. I tried chiropractors, which did nothing. I tried a chiropractor who specialized in Active Release Therapy (ART) which helped a bit with the feeling of pressure and inflammation, but did nothing to help the underlying problem - sore, painful tailbone! I tried Reiki. I tried massage. I tried myofacial release. You name it, I tried it. I was absolutely desperate to get better. Finally, just before Christmas of 2000, and about 17 months after the nightmare began, I happened to be at acupuncture one evening when a lady waiting in the lobby asked me if she could catch a ride back downtown with me. It was a snowy night and she was unable to get a cab. Since it was on my way I said sure. This was a fateful moment for me, although I did not realize it at the time.

On our ride back into the downtown core of our city, we chatted. She casually asked me why I was going to acupuncture. Not wanting to get into detail about having a sore tailbone, I simply said I had been having back problems and was hoping acupuncture would help. She began asking me numerous questions about the nature of my problem, and when I seemed a bit taken aback, she explained that she too had suffered for years with back problems until she found someone who did "Manual Therapy". I had never heard of this therapy but she briefly explained it as an old, old therapy that is based on the concept that if your skeleton, not just your spine, but your shoulders, rib cage, hips and spine are not straight and balanced, it can create havoc with your body. Since I had literally tried everything else I could possibly think of, and was getting more and more frightened and desperate... I asked for the name and phone number of this therapist.

I called the therapist immediately upon returning from a brief Christmas vacation. She works out of her home and is flexible in seeing patients in the evening or on the weekend. I went to see her a couple of days later on a Wednesday evening. She elaborated a bit on the therapy and told me it was developed by a Dr. Hess in the 1920's. He learned the principles of it from another elderly doctor at that time, so in fact, one could assume it originated in the 1800's. At any rate, the therapist herself had visited Dr. Hess about 20 years ago (say around 1982) when she herself was in desperate condition with a back and neck problem of her own. Indeed she was in such bad shape, she had to drop out of college as she was unable to cope. Dr. Hess helped her to return to normal and, well to make a long story short, he ended up taking her on as a student and taught her "Manual Therapy". Manual Therapy is indeed based on the premise that our skeleton must be in alignment and balanced, or our health will suffer as a result. When I explained my problem to the therapist, she was very low key but quietly said she thought she could help me. She asked two things of me. The first one was to commit to seeing her for at least four visits. The second was to stop all other forms of therapy. In other words, not to go to acupuncture, or massage, or the chiropractor. This way she would be able to tell if her therapy was helping me.

The therapy sessions themselves last one to one and a half hours each. She charges $40 Canadian per session and visit are usually one week to 10 days apart. You lay on a table, fully clothed, much like you would for a massage or a chiropractor visit and she assesses how "even" you are. She immediately told me that I had a twist in my hips and a bad twist in my shoulders. The therapy is hard to describe, but only consists of her gently pushing on a hip, or your rib cage, or your shoulder. I know it sounds strange. When I was driving home after the first visit I shook my head and thought "well here I go on another desperate wild goose chase". I felt no different after the first visit. I felt no different after the second visit. However, when I was driving home from the third visit, I felt "different". It's hard to describe, because it was subtle, but I just felt straighter. The next day I noticed that in fact I did feel better. My tailbone was far less painful and I was in less discomfort. As well, I could feel sort of a flickering-fluttering-pulsing sensation in my tailbone area -- like blood and oxygen was finally getting to an area that hadn't had it for a very long time. After my fourth visit, I couldn't believe how good I felt. I just had my fifth visit and I feel almost completely normal. This is in 5 weeks! In fact, the therapist feels that with perhaps one more visit I should be "right as rain". Then it is her suggestion to only come see her if I am having a problem or feel out of alignment. She felt if I practiced the posture she coached me on and followed the stretching she recommended, I would only have to see her once or twice a year. Obviously, this woman is not in it for the money. She simply wants to help people.

Anyhow, that's the short version of a long journey. However, if felt strongly that there needed to be a voice of "HOPE" for those of you that are suffering from a painful tailbone and see no cure/hope/light at the end of the tunnel. Perhaps once you've read my story, you may feel this is something you want to find out about. If so, please e-mail me and I will be happy to give you more information if I can.

Take care and hope you're all better soon!

Updated 2001-02-24




Pain in the butt

Hello my name is Katrina -  dcam@sympatico.ca

I'm 12 years old and have had a pain in the Butt for 7 months. I go to school on a regular basis but push around an office chair from class to class. I have had this pain in butt for a long time now and it seems like it will never go away. I have had MRI's, cat scans, bone scans, cortizone injections and TONS of x-rays. All the doctors don't know what's wrong with me and believe me when you don't know what you have it can get pretty scary at some times.

I had one doctor who told my mom she believed I was faking. Before this pain in the butt I danced 4 nights a week 3 or 4 hours a night I was in competition dance. And this doctor said to my mom she thought that I hated competition dace and wanted to Quit, but I did not know how to tell her. I WAS SO UPSET! Then other doctors are so nice.

Any how I have had 2 cortizone shots in the coccyx, and have a manual manipulation of my spine during surgery. I have also been on 3 different anti-inflamatories. It's been a long haul.

In 1 week I'll be going to Sick Kids Hospital in Toronto to se the orthopedic doctor we are going to suggest the removal of the tail bone. If any one can give me any encouragement or thoughts they would be greatly appreciated. I'd love to read your opinions or thoughts!

From: Katrina

Posted 2001-04-04

Response from Karol Johnston

My daughter is also 12 and has just in the last month started to feel great pain in her coccyx. X-rays have been taken and have shown nothing. So our own search to this begins. I just wanted to tell you there are young people out there your age going through the same thing and you are not alone in your pain. My families thoughts and prayers are with you and I hope that you soon find relief for your pain and to hang in there.

Updated 2001-10-28




I Need Some Relief!!!!

Kay Arthur - express_hockey@email.msn.com

I never thought I could feel such pain!

I fell down my back steps in 1992 and was out of work for about three months, but after the initial injury my pain basically went away. Then in 1998 I had disc surgery and I felt the most horrible pain, worse than I could ever imagine! It starts in my right hip and shoots down my right leg into my right foot. The last time I had the pain my right foot stayed numb for about 1 hour and my leg felt like it was waking up from being asleep. I go to an osteopath regularly and she helps some but sometimes it is AWFUL!!!!!

I had two epidural steroid injections in 1998 and am considering another one and have an appointment with an acupuncture doctor tomorrow. I am glad to know that I'm not the only one who lives with this kind of pain.

Thanks for letting me share.

Kay Arthur

Updated 2001-08-25




Pain without injury

Kellie

I have been experiencing pain for 6 months now with no injury that I'm aware of. The only thing I remember happening at this time was I had lifted a lot of boxes - some quite heavy - which resulted in initial back pain. Then the back pain became "tailbone" pain.

I've been x-rayed twice which showed "nothing". I had tests run on my stomach because I started experiencing extreme bloating in conjunction with the pain - nothing there either. I even had my female organs checked to see if there was a possible "domino effect" occurring - everything was clear.

Now I'm trying the chiropractor who is using electro-shock with ice packs, then adjustments. I immediately feel relief, but the pain comes back within 1 to 2 days. He seems to think that I have inflammation in that area which has caused the muscles to somewhat constrict, resulting in malfunction of this area. He feels that with continued treatment and specific exercises, the muscles will re-build to the point of "holding" the coccyx in the correct position. We'll see.....??????

Kellie

Updated 2001-07-01




Tailbone pain after childbirth

Kerri Johnson kjohnsonusa@mail.com

I want to thank you so much for your site! I (like many others I've read) have had severe tailbone pain after giving birth. To stand-up from a sitting position was extremely painful and sitting on a hard surface was just unthinkable. I voiced my pain to my doctor who said it was probably just 'severe bruising' from childbirth since I pushed so hard for so long. When the pain wasn't going away, my husband and I insisted on x-rays which showed nothing. My doctor was still concerned about my pain and said he wanted to refer me to an orthopedic surgeon for more evaluation (I luckily have a caring doctor).

I had several people tell me that pain from a tailbone injury could last up to two years - which had me very worried, especially when I think about returning to work which involves lots of getting up and down from sitting (ouch). Today I decided to search the internet for more information and found your site. I now know this is what I have and am so relieved I know what the pain is from! I've printed out several pages and are taking them with me to my appointment with the orthopedic doctor. My husband is very worried after reading about coccyx problems, but I'm relieved I now have answers and know things can be done. Thank you again for posting all this information. I found no other site containing information on this subject and will keep posting my experience for others to learn from.

Kerri Johnson

Anthem, Arizona

Updated 2001-09-02




Don't know how it happened, it just showed up

Kevin - JOY664@webtv.net

I have to use both hands to help me get up after sitting down for 5 minutes or more, with terrible pain coming from tailbone as I'm trying to stand up. Yet if I press on it, I feel very little pain.

I'm 44 years old

Kevin G.

Updated 2001-08-27




Surgery success in Arlington, Texas

Kim

Hi. My name is Kim and I suffered with severe coccyx pain for almost a year after a fall on a hardwood floor. After seeing a doctor who prescribed some medications and a "donut" to sit on for a few weeks, I was finally referred to an orthopedic surgeon. Dr. Charles Vavrin, prescribed some stronger medications and then referred me to a physical therapist for manual manipulation. (for those of you that don't know what that is... it's not very pleasant, but I was willing to try anything!)

After several weeks of manipulation, the therapist informed Dr. Vavrin that it wasn't budging. Relieved that this invasion was over, we then tried cortisone shots, which did help for a while but the pain always returned. Finally, Dr. Vavrin suggested the surgery. He told me it isn't done frequently and isn't always successful but it had brought almost complete relief to some of his patients. I agreed without almost any hesitation. I was so tired of not being able to sit for more than 10 minutes at a time. I wanted to sit through an entire movie and stay seated at church longer than to merely pray for relief!

Dr. Vavrin preformed my surgery at Arlington Memorial Hospital in Arlington, Texas on the Wednesday before Thanksgiving in 1997. It was a day surgery and I was home by 4:00 that afternoon. I was in quite a bit of pain through the Thanksgiving holiday but was equipped with some pretty good drugs. I returned to work on the following Tuesday still in much pain and wondering if it was worth it. It was!! The most difficult part was how long it took to fully recover. I was still having pain 2-3 months afterwards, but nothing like I was feeling before the surgery.

I am fortunate to be one of the success stories and would recommend the surgery to anyone that has dealt with coccyx pain. If your in the area, may I suggest Dr. Vavrin. He is very good and has a great sense of humor (if that's important to you). Three years later, I am still pain-free and have no regrets.

To make a long story even longer, I actually found this site because a close friend of mine fell on the arm of a chair and thinks she might have injured her coccyx and I was trying to get some information on what to do until she can get into see her doctor. Hopefully she will heal quickly and wont have a story to share!!

Updated 2001-04-15




Kim is facing surgery

Kim and Alan - alankim828@adelphia.net

Kim is facing surgery. She saw a doctor that kind of discouraged her from surgery. He said he only did 3 surgeries. One person got a little better. One person was the same, and one person got worse. We live in south Florida. Would any of your members have surgery in this area where they can recommend a surgeon?

You can tell other people to try lidoderm patches. It numbs the pain and takes away 25%. Its not the total answer but it will help.

I know any recommendation would be at our own risk.

Thanks Jon!!! Kim & Alan

Updated 2001-12-19




Need advice on my coccyx pain

Laura - damotts@execpc.com

My coccyx pain started for no apparent reason about 2 years ago, in June 1999. The only contributing factor may have been a long car trip at the time. I never remember receiving any trauma to my tailbone, and both my children's deliveries were uneventful. The orthopedic surgeon I saw said the pain was referred from my lower back where I have some mild degenerative disc disease--but I've been told it is not any worse than could be expected for someone my age (48). He prescribed nsaids which after 5 days didn't help but also caused diarrhea. I subsequently tried Celebrex which also caused diarrhea. I am not a fan of long-term medications anyway.

I've seen 3 physical therapists with no success. The most recent one said I had tight hamstrings and I did stretching exercises which ultimately did nothing to help. I also recently saw an occupational therapist who specializes in pain management for people who have tried everything else. At first she said I had some structural problems she could work on but suddenly decided the pain was from emotional trauma and tried to do "somatoemotional release" on me which I didn't buy. I've seen a chiropractor who said he thought my coccyx was not in alignment but after 8 adjustments agreed he couldn't help me. (Other doctors have said my coccyx is in the right position.)

I saw a pain management doctor who had an MRI done. Coincidentally the MRI showed me to have a large renal cyst the size of a grapefruit--I had to have an ultrasound to show that it was merely a cyst. (Because I have no symptoms from the cyst, we just leave it alone.) He gave me an elaborate procedure twice in which I had to be under mild sedation when he threaded a catheter into a canal in the sacral area and injected a solution to break up scar tissue which he said was causing the coccyx pain. Neither of these worked. Finally he called his colleagues who said to give me a "cortisone" shot. In June of 2000 I received a shot of Dep-Medrol which I understand is like cortisone and I was so happy that after a couple of weeks, my pain was 95% relieved. I hoped that the 5% left would resolve if I waited. After 4 months I was still feeling pretty good but wondered if another shot would resolve the final 5% pain that was still there. I had heard that sometimes more than one shot is necessary. The doctor agreed and I received the 2nd shot on October 31. Since then the pain is worse than it ever was! The doctor would not call me back for 2 weeks, and then he said he didn't know why the pain was worse unless maybe he bruised the bone. He pretty much threw up his hands and didn't want to have anything more to do with me. According to my medical record, both shots were done in the same manner with the same medication, so I just don't understand why the 2nd one made the pain worse. I brought my records back to my original orthopedic surgeon and he did not see anything to indicate that the pain doctor did anything wrong. The orthopedic surgeon recommended trying one more shot which he said he would do, but I am so afraid that perhaps it would worsen the pain even more! I regret so much having had that 2nd shot!

I currently am scheduled to see a physiatrist who supposedly has treated coccydynia, on June 13, the earliest I could get in to see him. He is at the Medical College here so I hoped he would be in on the latest research. But I overall am not too hopeful, especially after reading all the stories on this site. I feel lucky in that there are others who seem to have much worse pain than I do but I still get despondent when I think of living with this the rest of my life. I am sure if I had a coccygectomy I would be one of those for whom it would not work, so that scares me. I usually do not have pain when standing or walking. I usually can find a relatively comfortable position to sit in if I pick the right chair and position myself just so. I am able to sleep at night fairly well but it often hurts when I change position at night and will sometimes waken me. I do worry that it might get worse as time goes on.

I never thought I would resort to writing this--I always thought I would be one of the lucky ones to find relief. I am also a rather private person so it is hard to write, but I feel I need to ask if anyone out there has any words of advice. I have a couple of specific questions: Has anyone ever heard of the "cortisone" shot at first helping, and then actually making it worse? Does anyone have any thoughts on why this might happen? What do you think about trying it one more time? If I did, I wish I knew how to find a doctor who has done quite a few and has a good track record. How do you go about finding a doctor who has had a lot of experience successfully treating coccydynia?

Has anyone heard of good practitioners for coccydynia in the Milwaukee, Wisconsin area or in the Chicago area? Sometimes I think of going to Clear Passages in Florida but due to finances and the fact I have two children 10 and under make it very hard to consider, and then I think about how it very well may not help.

Thanks for listening--it feels better just to write about it to people who are in similar positions--if anyone can offer any advice, please email me.

Sincerely, Laura

Updated 2001-05-24




Tailbone pain - no cause

Laura - laura@higgins-thorne.on.ca

I have had a pain in my tailbone since January of 2001 after a 7-hour drive. The pain went away in the next day or so. But the pain recurred in small bouts over the next few months, particularly after sitting in chairs that caused me to "lean back" (eg. theatre seats). However, in June, the pain worsened significantly and was pretty much constant. I tried sitting on a donut cushion and taking Advil. I tried physiotherapy. The physiotherapy treatment of ice and ultrasound seemed to help a little, but some of the exercises aggravated the pain. I got X-rays which showed nothing. The only treatment that seemed to have any effect was acupuncture. And for me, I felt worse for the first day or so after the acupuncture, but then felt a lot better in subsequent days.

Since September, the pain has been greatly reduced and only recurs when I have been sitting in a bad chair, or driving for a long period of time--and then I usually recover quite quickly. I have been trying to reduce foods from my diet that tend to aggravate inflammation in the body. This may be helping too. Reducing the stress in my life has also helped. I find that when I am under a lot of pressure or emotional strain the pain is worse or recurs more often.

I have a bone scan scheduled and am not sure if it is going to be of any help in finding out what the problem is. The doctor suggested it when we weren't sure what to do next. But I am very uneasy about having foreign substances put into my body (particularly if they are radioactive) and so am very nervous about having it done...especially if it is not useful at all. Did anyone have any results from a bone scan that explained their tailbone pain?

Has anyone ever found a bone spur on the inside, rather than the outside (where you could feel it) of the tailbone? Could this be a cause?

I would love to hear from anyone with similar experiences or any insight causes/solutions.

Laura

Updated 2001-12-09




Daughter had years of pain - any experienced doctors in Florida?

LaVelle McCallister - nolemerc@aol.com

I have a daughter that is 14 years old and has been through several years of tailbone pain. Within the past few months we have been seeing an Orthopedic Surgeon at Shands Hospital in Gainesville Florida. Next week we will undergo one injection to see if it can offer any pain relief. My daughter, Cecilia, feels that it is a waste of time, but is eager to try anything to relieve the pain.

The surgeon informed us that he would not be able to do a coccygectomy on Cecilia and that Shands wouldn't be able to perform this procedure. I am now worried about finding a facility in Florida that has experience in this type of procedure and if they will except our HMO insurance. If anyone has any ideas of an experienced Dr. in Florida, please email me back, I would love to hear from you.

Thank you,

LaVelle McCallister

Updated 2001-04-28




Physicians in Western Canada?

Len - lpbrink@telusplanet.net

I found your website several months ago after looking for information on Coccydynia.

I have had a history of low back pain over the last twenty years but during the last 5 years the pain has increased in severity. I am on large doses of oral Morphine but this has little effect on reducing the severity of the pain.

I have had multiple investigations including x-rays, blood tests, CT scans, MRI and Bone scans. I have seen multiple specialists including Hematologists, Physiatrist, Rheumatologists, Internal Medicine as well as Physiotherapists, Chiropractors and Acupuncturists. I have received several injections by an anesthesiologist at a pain clinic under CT guidance.

The Mayo Clinic recently diagnosed my condition as Coccydynia and recommended that I attend their Pain Management Program. They never discussed the possibility of having the Coccyx removed.

Several local doctors have confirmed the diagnosis by internally checking the areas of tenderness in the tissues surrounding the Coccyx.

I have read about Dr. Jean-Yves Maigne of Paris who devised an X-Ray technique which compares movement of the Coccyx in standing and sitting positions. He states this approach is necessary in order to evaluate and cure the problem.

Unfortunately I am finding that most Physicians are not familiar with this technique, even though I live in Calgary, Alberta (western Canada) with a population of 900,000 people. Dr. Jean-Yves Maigne also cautions the patient that removal of the bone must be done very carefully and slowly to avoid any damage which could compromise the result. He recommends a surgeon with experience.

I would appreciate anyone knowing a Physician that can firstly evaluate as to whether I may be a suitable prospect and if so perform the surgery. I would prefer to have treatment done in Canada but would also appreciate the names of any treatment centres in the U.S.A.

I am not bed-ridden with this condition but my quality of life is poor. I rarely drive my car and must stand while eating my meals. When I lie down my low back muscles go into spasm which causes me a lot of additional pain.

If anyone can help please contact me at: lpbrink@telusplanet.net

Len

Updated 2001-06-09




CRACK! went my tailbone!

Linda - AyraLin@aol.com

Please NO laughing at the description of my accident!

I'm female, 50 years old and in fairly decent condition. Went on a vigorous hike up to Carlton Peak overlooking Lake Superior. There was a beautiful view on a perfect October autumn day. To my misfortune there was also a set of four old cement foundation stones from a long-gone fire watch tower. These cement blocks had giant metal bolts sticking up - used to attach angle iron tower legs to, I suppose. I tossed my jacket on one - to allow myself to cool down and have a little trail lunch. Ahhhh...what could be more perfect!

I finished lunch and needed to adjust my hiking boots - without a thought, I firmly plopped my bottom down on the cement block - RIGHT ON TOP OF THE BIG BOLT - CRACK! went my tailbone and I collapsed in sudden pain. My hiking partner assisted me to stand up and I was barely able to move for the pain. I had to hike down and back on 4 1/2 miles of wooded trails!

This happened on October 7, 11 days ago. Now when I sit, turn bend over I am struck with sudden stabs of pain in the coccyx that cause me to cry out.

Can anyone tell me if this sort of thing ever heals without problems? How long could this take? I have read over the web site information, and have book-marked it for future use if healing does not take place. Is there anything I can do to encourage recovery since this is so early in the game? Any suggestions welcomed!

Linda

Updated 2001-10-20




No treatment 6 months after childbirth

Lisa

It has been 6 months since I have given birth to my second child. During the birth I had to do some heavy pushing. She was having a hard time coming down so I kept working at it. After one good push she came down, but in the process of her moving down I felt a pop. I told the nurse what I felt, but nothing was ever made of it. After the baby was born and the epidural wore off I thought that I was just sore. I was hoping that's all it was.

The next day I could hardly move. It hurt to lay on my sides, could not lay on my back, could almost not even walk. Childbirth is painful enough - this pain was indescribable. I wanted to scream every time I had to move.

There were never any X-rays done at that time because the doctor said there was nothing that could help it if the tailbone was broken anyway. I suffer through the pain. I cried all the time. When I should have been laying down to get rest after the birth I did a lot of standing because I could not sit, and I was tired of laying on my side.

Well after weeks of severe pain it slowly got better and the popping that I was having with it started to stop. I also started to see a chiropractor which did not make a difference. The problem that I am having at this point is that I can't sit for long periods of time in a chair or in a car. And I am having trouble getting over the fear of doing anything because I am afraid of doing anything that may hurt it all over again.

Lisa

Updated 2001-04-15




Rollerblading fall

Lisa  ldusseau@visteon.com

Fell on my tailbone on concrete while Rollerblading two days ago and the pain is incredible! Mild throbbing while laying or sitting but pain is worst when getting up from a seated position.

Called my doctor this morning. I am currently using the ring cushion but it offers only slight relief. I'm also icing and taking ibuprofen. My job requires mostly sitting in front of a computer.

Is there anything else I should do and how long before I can resume my regular sports?

Regards, Lisa D.

Update:

Hello. I just wanted to give an update on my August 4th Rollerblading accident and what I've gone through so far. My doctor ordered X-rays and they didn't show a fracture or dislocation (fortunately). She gave me a prescription for Darvocet which took the edge off but didn't eliminate the pain. I purchased one of those pillow rings to make sitting at work tolerable. I went to my chiropractor last week and the adjustments seem to help. I'm also going to a sports med facility (as a result of landing on my upper back and elbow in the first fall) and they might give me an ultrasound treatment. I don't think I fell directly on my tailbone, but somewhat higher and off to the left. I'm slowly but surely getting better.

The thing that I don't understand is how callous and cruel some people can be about this injury. It is not funny and not something to be mocked. They really don't understand how ungodly painful it is. The first few days were by far the most painful thing I have been though in years and ranks very high on my "worst pain" list. I knew that when I bought the ring that I would be teased at work and that unfortunately is the case. I can certainly appreciate how years of pain like this might ruin one's quality of life. If I ever overhear somebody teasing someone else about tailbone pain (or any pain in that area, for that matter) I am going to intervene and demand they stop!

Good luck to all of you and I am with you in prayers and spirit!

Regards, Lisa D.

Updated 2001-08-25




I can't sit down because once I do I can't get back up again

Liz - lizababe40@hotmail.com

Hi

In the last couple of weeks I have suddenly and out of nowhere developed a really excruciating pain in my coccyx. I didn't fall, nothing happened and I'm a healthy 23 year old.

I can't sit down because once I do I can't get back up again.

Liz, Ireland

Updated 2001-09-22




Bowen therapy gave relief

Louise Lucas - belle@technet2000.com.au

Post-labour I suffered a tremendous pain upon sitting and was duly fobbed off by the medical staff. Having been a theatre nurse for many years I was offered and refused an operation as I did not believe the results would be worth it. My coccyx was not broken just misaligned badly.

Finally after no success with pain killers, physio etc. I discovered Bowen Therapy - a type of Physio and thankfully after two treatments I was completely recovered after nearly two years of constant pain. It was like a miracle as I would have paid anything at the time to get rid of the pain.

Happy to share this experience with anyone as I am so grateful for the relief I have been given.

I wish you every success and thanks for the opportunity to share my experiences with you.

Best wishes

Louise Lucas

See also Gill's story

Updated 2001-11-25




Pain relief

Mary W - john_w_29461@yahoo.com

This site is wonderful. You may use my story. I hope it helps someone.

My coccydynia was caused by the doctors trying to turn my baby. First I thought I was crazy. The doctors made me feel this way too. Finally I found a doctor who helped me out of sheer true concern. After two years of constant pain, not able to lift my baby and not able to sleep. He gave me back my life. He tried the injections, which helped for a few months. He then put me on a drug called Cataflam 50mg three times daily. (I tried others, which didn't help the pain go away) There are hardly any side effects and I can function like a normal person with this. Once the tablet wears off I can tell and it usually takes 20 minutes for the pill to take effect.

I understand the women who pain increases during their menstrual cycle. My pain does as well, but I just increase the dosage that week (4 times daily). I hope someone can get relief from this drug as I have. It has truly given me back my life. Thanks to that wonderful doctor who believed my pain. By the way.. at the time he treated me he was 76 years old! Since he has died, but I will always thank God for him!

Mary W.

Note from Jon Miles - Cataflam is a brand name for diclofenac, sold under many other names, and found by other people to be helpful with this pain.

Updated 2001-11-25




My pain from a broken tailbone is excruciating

Melanie - MGCassells33@aol.com

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.


Hi

I am a 41 year old schoolteacher, married with 2 children. I fell down my stairs on November 8 2000. At first, there were waves of pain that would make me nauseous, it was impossible to sit or even lie down, the only relief was standing. Driving in the car brought tears to my eyes when I had to go around a corner.

I never considered going to a doctor because we are always told that there is nothing that can be done for a broken tailbone. Eventually, I decided to visit a well respected chiropractor. He began treatment without taking x-rays because, in his defense, I was a bit vague about the exact area of pain. When he did x-ray, he immediately discharged me as a patient. The break is fairly high up on the coccyx and as he explained to me I have an unusually long tailbone. He indicated that there was nothing that could be done.

My pain is at times excruciating. Remaining seated for any length of time is impossible. I have tried pillows designed specifically for the problem. I sit forward and stand as much as possible. If I am unlucky enough to lean back at all, the pain is as severe as you can imagine and sometimes I think I will not be able to get up. In fact I can feel the bones separating when I stand up so I know I am not healing.

Do you know if there is any danger of infection in this area?

Well, I'm so glad to have found this site. Everyone around here is sick to death of hearing about it. Thanks

Melanie

Langley, BC Canada

Updated 2001-08-25




Tried everything but still in pain

Nancy Cramer namay@enter.net

A surgeon removed my entire coccyx 12-1991 after 2 years of pain. The pain has never left me. I have tried acupuncture, physical therapy, water therapy, chiropractors, pills, shots, heat, cold, rubs and patches. The pain goes on. The nerves are exposed when the coccyx is removed and the doctors don't tell you this. I was told "have the surgery or your coccyx will puncture your bowel"' so I did what the good doctor said.

I lost my job, friends, the ability to do most of the things I like and care about. I went to the law and my doctor had sent me running from doctor to doctor until the time lapsed to sue.

Now I struggle to do the smallest housework and cooking, my children live in another state and riding in the car hurts, as do the steps to their houses. It's hard to sit, stand, walk, ride, bend, or lift much at all. Even as I sit and type, the pain is with me.

I need some advice and someone maybe to talk to who knows where I come from. I have many doctors horror stories, also ways that I hold onto my faith to "smell the roses when all else fails".

Anyone with this dreaded disability please contact me and we can help each other there the long painful days. I await word .

My many thanks

Nancy Cramer,

605 4th St Belvidere NJj 07823

Updated 2001-08-05




Any suitable surgeons in Florida?

Pam   -  PTippins@aol.com

I live in Central Florida and am a member of an HMO*. I've called all the orthopedic surgeons on my plan and none of them do the procedure. I wonder if anyone knows of a qualified orthopedic surgeon in the state of Florida, or even perhaps a general surgeon who might do this surgery?

I have a severely displaced, subluxating coccyx, visibly prominent, which has caused nerve damage down both legs( via EMG testing) The lower lumbar disks are painful, with multiple trigger points in that area, as well as around the sacroiliac joints, into the hips. I work at home (thankfully) as a medical transcription and am required to sit for several hours during the day. I'm in constant pain, despite the use of narcotic analgesics and would like to get this procedure done. My neurologist concurs that this is necessary.

Any help would be appreciated.

Pam

*  Note from Jon: Not being in the USA, I didn't know what an HMO is. I looked it up on the web. For anyone else in ignorance, this is what I found:

An HMO (Health Maintenance Organization) is a health plan that is also involved in how your health care is delivered. Managed care refers to health plans coordinating your health care with you and the providers that participate in the health plan. HMOs are the most common type of managed care.

A Medicare HMO is an HMO that has contracted with the federal government under the Medicare+ Choice program to provide health benefits to persons eligible for Medicare that choose to enroll in the HMO, instead of receiving their benefits and care through the traditional fee for service Medicare program.

Updated 2001-07-21




I had the op

Pamela

I had the op just over nine and a half years ago when I was 35. I still get pain, but nothing like I was getting. I still have to sit on the sofa with my left leg tucked up under me, it helps with the pressure on my tail, or what remains of it. I avoid hard plastic seats as much as I can, and church pews!!

I was out of hospital within 24 hours, and back to work in 2 weeks, I just had to avoid bending down a lot. I'd had the steroid injections, manipulation and heat treatment therapy, the op was the only option left, and it was the best of them all. It hasn't cured the problem but it is a lot less painful than it was.

Updated 2001-11-11




Hello and thank God I happened upon this site

Phillip  PJandCG@aol.com

I am 26 and for the past two months have noticed an uncomfortable pain growing from my "butt". . . LOL. I joked for a while with my family and friends stating that I had tail bone cancer, I know not really funny, but I was beginning to worry.

It is 12.30 in the morning and I just got home from an evening at the theatre. Let me say while sitting, trying to enjoy the performance, my bone steadily began to ache.

On the drive home I mentioned to my friend that my butt is getting worse. He laughed and said once again for me to go to the doctor. I hate doctors, although mine is very cute. I can just imagine the situation. Hey doc, as I pull my pants down, my butt hurts.

OK, back to getting home tonight. I decided to go to web MD, research my problem. Bang coccyx whatever pops up on the screen and your site soon follows.

I am not crazy . . I am not alone . . I do not have "butt cancer". I still am in pain though, although I feel better because I am not alone. . .

Updated 2001-10-14




Long, sharply angled coccyx

Rachel Webb - webb@smartchat.net.au

I have suffered since being a child with coccyx pain. I have a long coccyx which is sharply angled. My orthopedic surgeon has suggested for me to have it removed 3 months after the birth of my first child.

My surgeon has given me his recommendation that I have a caesarean section rather than a natural child birth due to my tailbone issue, as he is concerned it may cause problems passing and associated pain.

My obstetrician's opinion is that I have a natural child birth, as the coccyx will move when the baby passes through and at worst my tailbone will crack.

I wondering if there is anybody who has knows more information about childbirth and coccyx issues, as I am trying to decide what to do? I do not want to suffer any more pain, or complication with birth due to this issue and need more information as I don't think the obstetrician has ever experienced anyone with a angled coccyx before, just normal damage through childbirth.

I would appreciate any advice, or to hear others opinions on the matter.

Yours faithfully

Rachel Webb

Sydney - Australia

Updated 2001-12-09




I have had a tender coccyx all my life

Renee Donalson

I just found this wonderful site, thanks to Jon and am hoping for some answers!

I have had a tender coccyx all my life, I am a 35 year old female. Doing things like sit ups, I would have to lean to one side of my butt cheek coming up, etc. Well the pain has gotten very intense these past few years and now it is intolerable. Sitting on our soft couch, standing up from the sitting position and lying on our soft bed all cause intense pain.

I can feel my coccyx and it is the very tip that hurts the most. I cannot feel any abnormalities and have had an x-ray, cat scan and just had an MRI, they all came back normal :(   I am at my wits end here.

My mother tells me that when I was born, at my six month check up the pediatrician told her that I would probably have pain with my tailbone and may need surgery but she cannot remember for the life of her what he called it. The pediatrician had told my mom that when I got older, that's when the pain would get more intense. Has anyone had these same symptoms and born with it? Even when I am in the shower and I run my washcloth over it, it sends me through the ceiling. On top of my lower back pain from a bulged disc and my right atlas in my neck being out, I am going crazy.

My pcp has me on 40 mg of methadone per day and soma muscle relaxers three times per day and it doesn't even phase my tail bone pain at all... Please help if anyone can give me any information at all... I am reading all I can on this site and hoping to learn more...

Thanks in advance!!!

Renee Donalson

Updated 2001-11-18




Prolotherapy as a treatment for coccydynia

Ron - FXSBPAUL@aol.com

Had coccyx pain for a year. Saw chiropracters and physical therapists with no results.

Had prolotherapy (rejuvination of damaged tendons and ligaments attached to the coccyx) and started feeling relief immediately.

75% better at this time, still in treament.

Do yourself a favor----look into this!

Ron

(See also section on prolotherapy - Jon)

Updated 2001-10-28




Severe pain for over 2 years. Now had coccyx removed.

Rory Greenwell -

(link to update October 1999)

(link to update February 2000)

(link to update July 2001)

Me too! I had me 400 lbs of steel come down with me on a concrete floor... been dealing with severe pain in the area for over two years now. I worked as a mechanic in a large Ford dealership at the time. I had completed my apprenticeship and acquired my licence at this dealership, my employment with this firm had been a good one for 8 years.

April 25th 1996, the day of the accident. I'm pulling a large air jack (400 lbs) through the automotive shop, when I slip and fall backwards, with this jack in my arms. I land on my tailbone and sacral area with the jack landing on top of me. I laid there for a long time (10 - 15 min) before I could move, managed to lift the jack off me and get up to report the accident to my employer.

They drove me down to emergency and an x-ray was taken of my tailbone and lower back. I was sent home with a "bruised coccyx". But the intense pain continued for months afterwards and was not getting any better. I went to many specialists, and even tried acupuncture, but nothing helped. I have tried the cortizone route - it only made it worse. It felt great the day of the needles (boy do they hurt going in !!) but the relief was only for that one day. The needles leave you very sore and aggravated for 'bout two days. The anesthetic properties wore off in one day.. then things were actually worse. I could feel the pockets of goo in there and they felt like very irritating lumps, and tender to boot.

WCB (Workmans Compensation Board of British Columbia) kept sending me back to work, only for me to give up because of the pain in my lower back and tailbone. Finally, WCB sent me down to Vancouver for MRI scans to be done. The scans showed a disc bulge in the lower back that was interfering with my sciatic nerve. But the MRI plates did not show any of the tailbone area, the most painful part of my injury. When I asked why the coccyx was not included in the pictures, the specialist with compo told me that they rarely take pictures of this area because there is nothing that can be done about it anyway.. . . but they did find a disc problem, but it really didn't need to be operated on.. . I was adamant about the pain in my tailbone, but he said it was nothing to worry about and that it would heal in time. He didn't have a picture to look at and never examined the area in which I was in pain.. . . . . .

I was sent home again and told to go back to work.. . . . again. My employer had to keep me on light duties all this time because I could not function as a mechanic. Just driving a vehicle is extremely painful for me to this day.

WCB saw that I was not improving, and decided to send me to a pain clinic in Vancouver for six weeks. The daily regime was to exercise as a group and then attend classes about the human anatomy, how to deal with stress, pain, life in general. But I was never evaluated as to what part of me hurt. If I inquired (and I did) about my injury to my coccyx, I was told that it would get better.. . !

The exercise program was very painful for me, and the instructors always turned a blind eye to the fact that I could not lay on my back and was in severe pain anytime we did sit-ups or anything that required me to be on my butt. I was a wreck by the end of this program and the administrators knew it. At the end of my stay they said that I was fit to return to work. I still walked with a severe limp, could not ride in an automobile without intense pain, and felt crippling pain in the tailbone area 24 hours a day. But they told WCB that there was nothing wrong with me and I should be back to my work duties in no time. I was ordered back to work, not capable of doing my job. They made their decisions solely on the fact that WCB wanted to see results. I wonder how many souls have been subject to the same treatment. WCB cancelled my benefits in Nov. 97. We are about to lose everything because of a decision made by a group of people who don't care about anything except showing WCB results, and to keep their "success" figures up.

I have come to the point of INSISTING removal of the painful thing, but MD is being veeery cautious. Must be because it is a dangerous op. I don't care anymore. I can't live like this anymore. Can't even take my kids to a movie because I end-up standing in the isles.

Now that I am no longer under the control of WCB, I have seen specialists that have taken a real interest in my problems. They know what is wrong with me and I am on the waiting list for surgery to remove my tailbone. It only took one good X-ray and the help of an anesthesiologist and a surgeon to determine that the discs in my tailbone are damaged and that removing my tailbone will put me out of this misery. Amazing, this took no time at all once compo was out of the picture.. .

Coccyx removed 1999 January 19

4 days after the operation:

I have a REALLY sore ass !! Anyways.. the anesthesia that I was so worried about (makes me sick) didn't bother me at all. I woke up so gently and felt so good that in about half an hour I was out of bed putting my clothes on ready to go home.. . . !! I had asked for a particular anesthesiologist (the one I had been to for pain relief already) and he turned up for me.. this made me feel very comfortable, because I trust him.. he is the one that diagnosed my problem in the first place.. . I was pain free when I walked out of the hospital only one hour after the surgery. They had given me a spinal block and it was still active till about 5 o clock that evening.

THEN things started to hurt.. lol.. . OUCH!! feels like a rhinoceros head butted me!! The next day was hell.. could not move my legs without severe sharp pain. Day 3.. not so bad.. . 60 % of original Day 4.. have to keep reminding myself to SLOW DOWN.. pain only 40 % today.. pretty sore again.. think I did too much yesterday.. lol.. pain.. still 40 % ?? getting better and better. I am thrilled!! the shooting, stabbing pains that consumed my back, buttocks, penis, legs.. are gone they were gone the day I came home.. but didn't want to get my hopes up.. but they are still gone.. . (knock on wood).. I feel sooo much better, regardless of the pain in my butt from the surgery. I know that the surgery pain will be gone in a month.. I am so happy I could flip.. (but I won't cuz I have to be careful of my stitches.. lol) still can't sit down for any length of time.. I am kneeling right now to type this.. sitting is excruciating.. . the doc said that it would be for a month no moving too fast for a month either.. no problem.. a slug would beat me at the 100 yard dash easily right now. I feel I can beat this chronic pain now and get on with me and my family's lives.. . . a few more months and I should be as good as new.

13 days after the operation:

Well... it's been 13 days since the surgeon removed my tailbone. I am able to sit for a while now, but only for short periods. I had my stitches removed on the 27th of Jan by the surgeon that performed the operation. He told me that my coccyx was not attached to my sacrum, it was floating around all by itself. The term he used was "unstable".

When I woke up from the surgery I was surprised to feel calm and rested. I was not sick or in any kind of pain at all. Amazing what a spinal block and a mild sedative can do. I was sent home 1 hour after I had awakened, I actually got out of the bed myself and walked to our vehicle in the parking lot!! I was pain free till about 5 o'clock that evening. Then it started to HURT. moving at all was excruciating. this is a PAINFUL operation, just as I was warned. The next 3-4 days were at least a 10 on the pain scale, tylenol 4 and demerol were administered. The demerol seemed to smooth it over, but made me vomit in the mornings, especially if I drank even a little bit of coffee, but that passed once I knew how many to take and when, and was quite effective in bringing the pain down to about a 6. I could not sit, roll over, move my legs quickly, cough or even think about sneezing, so the first week was hell.

13 days have passed now and I am able to sit and type this.

All the sharp, spiking pains that were present before the operation are gone. Last night was the first pain free night in bed that I have had in almost three years. I remember thinking that I didn't want to fall asleep, because it felt sooo good. Then it was 9 am!

Every day that goes by now is better and better. the healing process is accelerating at an exponential rate. In my own opinion I believe I will be pain free in about two weeks (fingers crossed ). Right now I still feel the muscle fibres and connective tissue pulling sharply if I do anything too fast, and I still don't want to ride in a car yet, or sit for more than a minute.

The surgeons are definitely telling the truth when they tell you that you will be down for a month, this is still quite brutal at times. I think I am faring well though, up and around and it hasn't even been two weeks yet.

My advice to people thinking about this procedure :

1. If you are willing to endure a high level of pain for the first week of post op, this operation is definitely worth it. All my previous pain is gone.

2. I recommend the spinal block for the op.

3. Have lots of pain killer meds ready for immediate use after the op.

4. Make sure that your bed is soft, you will not be able to lay on your back and your hips will ache. (I used a thick foam).

5. You will not be able to shower or bathe for at least 10 days, so be clean BEFORE you go in

6. If you won't be staying in the hospital you will ABSOLUTELY need someone to help you at home, you will not be able to move the second day (I guarantee it).

7. First bowel movement: I was quite scared about this one and made sure that I was EMPTY before I went in. But it turns out that my first movement (2 days after the op) didn't hurt at all, my fears were unfounded....no problem at all (except to bend over and wipe)

8. If you read, now's a good time to do it...............

I recommend this operation to anyone who is thinking of having it done. this condition takes away too much of life, a month of recovery is nothing compared to the benefits. I see myself getting better each day and wish this could have been done and over with 2 years ago more to come.................gotta go now, my ass hurts!!

18 days after the operation:

I am also kneeling and standing and sitting, have to keep moving.. . even without a coccyx. I am also getting a little scared now because pain is still present.. . BUT it is a totally different pain! It is pain from the surgery.. . . . . it WILL take time. This pain is the type that gets better and better every day, I have ups, and I have downs I had a REAL down the other day when I tripped over the coffee table.. . went down in slow motion.. . . BAD.. . felt all the ligaments, stretch, pull, SCREAM.. tears in the eyes, just another day. This really is a tough op.. . . . I've had broken legs and smashed bones (I skateboard and skI and motorbike and do stupid, fun things) pain is not that bad to me.. especially when you know it will only be three months, tops.

This tailbone thing brought me down HARD.. lost my life.. thought about giving it up.. . being in the pain I am in now is nothing, this pain is SURGERY PAIN I now sleep at night, have NO problem getting out of bed in the morning and look forward to a bright new future.. . no matter what else happens I HAVE MY LIFE BACK !!!!!!!!!!!! people are telling me that my whole attitude has changed. I have people coming to visit ME! The surgeon took ALL of my coccyx.. it is no longer a part of my life.. . he showed me how much of it there was.. a good 6 inches.. all the vertebrae.. he only had to pull it out of me, no saws, no knives, no prybars (it wasn't attached anymore) I FEEL MUCH BETTER, the aggravated nerves no longer consume my every waking moment also, the L5 s1 disc in my back has stopped bugging me.. . I tell ya, the irritation of that damned tailbone was as big as a large dinner plate.. my whole body is starting to feel GREAT.. people should know that this IS brutal.. . . . like I say.. I know pain, but this was something to reckon with. BE READY !!! legs and back and "am I ever going to get better" will be on the mind.. . I tell you, I can honestly say that even if I end up with the pain I have now.. at this moment, it will be worth it.. no more "flashing ", "spiking ", tears in the eyes, pain that no one else can imagine. I SLEEP at night !

Oh yeah ....if you think that the coccyx is just "little" wait till you see it in front of your eyes.. . IT"S BIG!!!

08-Oct-99

I have been contacted by more than a few people lately asking me to update my story on Jon's excellent site, so here goes and I will start from where I left off.

End of Jan 99 :

My spirits are quite high now, I believe that it may be all over in one or two more months.

Feb 99 :

The healing seems to have slowed down somewhat. I do not have any discomfort from the surgical site or the stitches anymore, but I am still very tender around the coccyx area. After a long fight with Manulife Financial it seems they may've taken my case seriously (after a year and a half) and are sending some money for my destitute family and I. Anything physical or driving is still excruciating, but I am trying my best. I am gobbling tylenol 3's, but they are not very potent. I decide to start walking as a beginning to an exercise program. The first attempt is to the corner store (about 8 blocks) . Things are going well till the return home. About a quarter way home I realize that this may be a mistake, but I plod on and make it. Whoo !! I slept well that night LOL.

March 99 :

March 6th is the day I finally get my say with the WCB of British Columbia. It is also my son's birthday. The ride to the hotel where the appeal is to take place is very painful (I hate getting into a vehicle these days, I have to ride on the bench seat in the back and lay on my side, thank god my wife is doing the driving and giving me all the support I need) . The meeting takes only 30 minutes and we win, totally !! I could not sit down throughout the gathering and had to use my cane for support, I just hoped that the appeals officer didn't think I was faking or something. I was in agony the whole time.

April 99 :

What is going on ?? Why do I still have this horrible pain ? The pain has moved to the upper portion of my sacrum. I'm starting to wonder if I've gotten my hopes up waaaay to far...........

The docs all said that I would be as good as new in two months and it just isn't happening. This is taking forever.

Have not heard from WCB regarding our decision. What is taking them soo long ?? Manulife is sending me to the YMCA for physiotherapy, I get the feeling that they are going to railroad me and tell me that I'm ok.

I do their exercises, and follow their instructions. It is hurting a lot and I keep crapping my pants................

May 99 :

Saw my doctor this month and told him that the pain was still pretty intense. He told me to forget it and get a job........!!! I ask him how I'm supposed to do that now that all my tools have been repossessed (30 grand worth) and I still can't lift anything and have no energy at all and cannot lay on my back................

He prescribes a drug called " carbamazipine " that is used for epileptics to control their seizures, but it is supposed to help people with nerve damage pain. I take this drug for two weeks and feel absolutely horrible, all I can do is sleep. I am dizzy, nauseous and fatigued the whole time. When I see him the next time I ask to be taken off this yucky crap, so what does he do?? Doubles the dose. It is at this point I decide to find another doctor....................I realize that he has done nothing to help me with my fight with the WCB or Manulife and has actually hindered my progress with bad reports that no-one can read or understand. So I get in touch with some of my chronic pain friends and one of them mentions a name that I recall. A name that I had gone to school with and skateboarded with, I wonder if it is the same person. I call their office and talk with the secretary.

She says that they are not taking new clients at this time but will inform the doctor that I called. An hour later the same secretary calls me back and asks " are you the same Rory Greenwell that used to skateboard with Bruce??" I say "Yes, yes I am!"

I had an appointment to see him the very next week ! Small world huh ??

This new doctor is willing to try any sort of medication that will work for me, thank god...........finally.

Manulife does railroad me and writes a report that is absolutely false and says that I am fit to return to work

Geeeeeez

I write a scathing letter to the head p/t and tell her exactly what I think of her and her methods, three weeks of torture and abuse, just to be told that " I was outta here ". What a crock. Do not trust any of these " so called " insurance companies, they will screw you everytime.............

June 99 :

The appointments with this new doctor are going very well. We have tried an assortment of pain killing drugs, but many of them have gross side effects, but we will keep trying.

I am much more active now, but still pay a high price for doing anything too physical. I love to fix mechanical things and have started to repair motorcycles and other small engines stuff in my spare time and when I can do it without too much pain. Keeps the boredom away and keeps me active anyways.

July 99 :

I truly believe now that there are still more cracks or some kind of damage to my sacrum or upper coccyx. It is still bugging the hell outta me and I am very worried. I tell my new doctor this and he asks if I have had any x-rays since the operation. he is very surprised to hear that no such pictures have been taken, so sends me to the x-ray dept to get some slides taken. They come back negative, but I ask to see them and the technician lets me. I can see what looks to me like more damage, but it is hard to convince anyone so I am at square one again. I also ask him if there is anything I can do about a very large hemorrhoid I have had since the accident and he books me in to see a proctologist right away ! Everytime I mentioned this to the old doctor he told me to " ignore it " or " they heal themselves ". Well it's been 3 and a half years and it hasn't " healed itself ". So I am looking forward to having that little " misery " out of my life. The appointment is for Oct 19th. I'll let you all know how that goes.

My new doc also prescribes Percocet for my pain. Wow ! What a relief ! I can actually sit down and be comfortable on this stuff. Too bad it makes me feel gross, but I will try it for a while and give it a chance.

Aug 99 :

The Percocet is just too much too live with. I find I sleep too much with it and am very lethargic the next day. Too bad cuz it sure works for pain. We are going to try a different drug called MS Contin. It is timed release morphine.

I am doing much more now and can drive for short distances easily enough. I called the anesthesiologist that had given me help before because I wanted some more cortizone shots. But it seems he has turned his back on me, just like my original doctor did, once they realized that I was not getting better fast enough for them. They both said I would be better in two months, but by reading the info on this web site about others I realize that they were both totally wrong. Doctors hate to be wrong. it looks as if I will be recovering from this for years to come, both physically and financially. I do hope to get more of those shots though, they sure did help my lower back......................maybe my new doc can refer me to someone who cares.

The morphine is starting to work wonders. I get up easily, without the " grogginess " in the morning and it doesn't space me out at all. I feel quite alert now (we all need more lerts) and seem to be getting much more done. I am really enjoying working on the bikes, although some days I still cannot do it. This is going to be a problem for me if I do get a job again. I won't be very reliable because there are days when I just can't do much at all.

Sept 99 :

WCB finally paid us, but only up until march 99. They are going by the letter that my old doctor wrote which states " Rory should be recovered in two months ". Geeeez, I couldn't even climb a flight of stairs in march..................

The fight goes on with WCB. I am a little, tiny, teeny bit better every month. The morphine is wondrous. Why couldn't they have tried this in the first place ?? WCB is also sending me to see a psychiatrist " to deal with my depression". I told them that once my family was fed again that this " depression " would probably disappear. They didn't seem to understand LOL. So more to come about that. The first appointment is in Oct................

At the end of Sept I took a serious fall. This was caused by doing something stupid, of course. I will not say why I fell but a very interesting thing happened to me in the next few hours. As the bumps and bruises started to swell up on my right side from my hip down to my ankle (I had landed on my right side, all of it) , I noticed that my left leg felt very odd indeed.

There was no more tingling or " dead " sensations in it. My left leg felt as if it had come back to life and I could feel it again and had all my strength in it. Something which I have not had since my original accident.

I remembered hearing a popping sound as I landed, why do I get the feeling that my left leg had been dislocated all these years?

Anyways, since that dark day at the end of Sept, my left leg has decided to rejoin the rest of my body.........go figure.

Oct 99 :

I am writing this Oct 8th. This is the month where all shit will hit the fan. Manulife has asked for their measley little amount of cash back and after the way they treated us I think I will tell them to go suck an egg. I have appointments to see psychologists, appointments to see surgeons, a letter coming from my doctor explaining to compo why I am on morphine (I think they were very surprised to hear that.....) And a whole whack of other stuff to do and get on with.

I am still partially disabled and have many battles with " insurance " companies to get through. The creditors are still calling for all sorts of things, my credit is a shambles, my finances are a shambles, my pain goes on. Thank god for the support of my wife.

I cannot believe how injured people are treated in this day and age by the very people that are supposed to help us. You could buy insurance till it came out of your ears and it wouldn't do you any good. They want your money right away, but trying to get a dime outta them is like pulling teeth. I have never seen so much denial and corruption in my life.

So...........that's it for now. I know that I have left many things out because it has been a long time since I have done an update.

Thank you all for writing to me, it shows that there are people out there in the same situation and pain as me. Don't be afraid to go through with this operation, it has helped me immensely, it is just taking a very long time to recover. Remember also that I sustained more injuries than a broken coccyx and that these are a factor as well. I do not think that I am the normal case and most times things go much smoother than they have for me.

I will keep updating and answering questions for years to come. Don't be afraid to e-mail me if you want to talk.

Feb 2000

The hemorrhoid situation I had has cleared up by itself. One night, as I was giving birth to a brick, I felt a sharp pain in my anus and concluded that I had gained another hemorrhoid. At first I thought that I would just live with it because I was in to see the specialist in two weeks anyways. I tried to put up with the pain for two days and finally gave up. I asked my wife to take a look for me and tell me what she saw. What she saw was a walnut sized " thingy " poking out of my bowels ! She said that it looked like a purple balloon half blown up, and that we had better get down to emergency right away.

Soooo she drove me to the hospital, stood around for an hour (couldn't sit) and then my turn came. The doctor in the e/r took a look and told me that this " thingy " was known as a "thrombosis", or a "thrombosed vein", and that it was a fair size (one of the best he'd seen) . So he got a needle and scalpel and proceeded to remove the thing. I was shocked at how much " stuff " he scooped out of there. The anesthetic wore off while in the truck on the way home......I was sweatin'!!! It took approx one week to calm down and feel better, by two weeks there was no pain at all. So this thrombosis had been there for 4 years, ready to give way, or blow-up, or whatever it did. I could feel " something " in there ever since I had this accident and it affected my daily life. Anyways it is gone now and my bowels feel MUCH better thankyou very much LOL. The specialist never did get to see it because, of course, it was all healed by the time I got to see him. I had the colonoscopy anyways, just to be sure. Nothing found....clear as a bell (so to speak) .

I started seeing the psychologist. She's very nice. I actually feel that I have an ally now. I got a rotten letter from WCB while in her care because I had missed an appointment (because the hospital visit mentioned above was the night before my appointment with the psychologist) with her. The letter from WCB was rude and threatening and said that I may lose benefits if I continued to miss appointments. I showed this letter to the psychologist. She was NOT impressed with WCB. And they wonder why I'm depressed?????? That whole month was a waste for me, all I did was sleep and contemplate suicide.

I stopped taking the morphine beginning of February. Everyone around me seemed to be so worried about it that I figured I would just stop. The world seemed to tilt on it's axis..........REALLY. I also had flu-like symptoms: very tired, dizzy. Not sick though, didn't do the funky chicken or anything like that..... I didn't crave more either. In two weeks I was fine. Pain is more intense now though.

Saw the surgeon again and asked him to take out more bone in the coccyx area. He examined me and had to refuse another operation. He said that he had already taken part of the sacrum and didn't dare go any further without risking nerve damage and possibly paralysing me. So I asked him what other options I had. It turns out that there IS one more thing we can do to reduce this pain. He suggested PERMANENT nerve blocks. This is a procedure in which the offending nerves are actually burnt or frozen to death, thus stopping the pain signals. I said "let's do it". This will be the LAST option, after this, there is nothing more that can be done. ..........................God I hope it works. So I await a phonecall from the anesthesiologist that helped me out with the cortizone shots and helped diagnose my problem in the first place, Dr. Kraima.

Mid Feb I started a weight training program. I feel so weak and have lost so much muscle in the last year that I have to do something.................. I've lost 35lbs in the last year or two....I WANT it back! I WANT to feel human again!! It is now the first of March and I am feeling much better physically. The muscle tone is coming back much faster than I expected. I just hope that I can keep it up. Some days it is hard to keep going with the nagging pain in the butt.......................

July 2001

(Continuing on from February 2000)

The anesthesiologist saw me every second day to do nerve blocks.

These needles were injected into the sacrum area and contained anesthetics designed to interrupt the pain signals, enough of them and it should stop the nerves from firing and reduce the pain. I subjected myself to about 12 appointments and the area became extremely sore and bruised, butt it seemed to help near the end. We also used the fluoroscope the first few times and lo and behold there was still a segment of coccyx attached to the sacrum (I had been trying to tell him this..). The surgeon had told me that they had already taken part of the sacrum, butt, there on the fluoroscope, proof that he had lied to me, part of the coccyx was still there and painful as hell.

I got an apology from the anesthesiologist, the surgeon had moved away by then (to sail his yacht on the west coast ... must be nice).

The last appointment I had with the anesthesiologist was a complete surprise !

He had phoned WCB about all the shots and they had told him that I had osteoporosis. He blew me off ! Told me that there was nothing he could do for me.

A few weeks after this episode I noticed a white van hanging around our house. I had the feeling I was being watched...

I WAS being watched. WCB contacted me and set up an appointment to see one of their counselors. Turns out that they had video tape of me sitting on my step taking my kids to the dairy queen for ice-cream, and helping a youngster with his motorcycle. The WCB cut off my benefits that day.

I look like shit on the video tape, I hadn't done anything physical and yet they accuse me of being a faker. The whole appointment was a setup from the get-go. I am devastated. what now ?

My only recourse is to file another appeal...

Late July 2000. Wife asks me to leave. I move into my mother's basement. Beginning of the end for the marriage, about a month later I start divorce proceedings. The pain goes on and on and on...

Mid June 2001. Much changes in my life through the winter and into the summer of 2001.

I'll write more about it in another post. for now I am still awaiting my hearing with the WCB, and still wait for the divorce to happen. The PITA continues...

Updated 2001-07-01




Tailbone pain with constipation

Rusty - r_saucer@nortexinfo.net

I was so relieved (?) to hear that I'm not alone. I just had my third child 5 months ago (all c-section births). About a month ago my tailbone started hurting and I also feel constipated (Anyone else have this side effect?).

I'm hesitating on calling the doctor because I know he'll just refer me on to a physical therapist, and I don't have the time nor opportunity for such treatment.

Anyway, my prayers to my fellow pains in the butts.

Updated 2001-12-30




Slipped downstairs - help!

Sara   Purrplrekatts@cs.com

A few days ago I slipped down my friends stairs and I slipped down on my tailbone. It didn't really hurt at first but after I walked and ran for the first two days I can't do anything without being in pain.

I don't know if I should go to the doctor or if I should just leave it alone. Nothing helps the pain except for standing up and I don't want to stand up for the rest of my life.

Sara

Updated 2001-10-20




It hurts when I sit down and when I get up

Hi. My name is Shani.

I have been having pain in the tailbone area for about 2 or 3 months now. I don't know the cause other than I sit most of the day for my job. It hurts when I sit down and when I get up. Now that I am reading about others with this problem it really helps. I haven't seen a doctor yet. Yes, it is O.k. to put my name on the internet.

My email address is Shanir@bellsouth.net.

Thank you.

Updated 2001-07-08




Slipped on bus steps - now has plantar fasciitis as well as coccyx pain

Stacie - stacie@vannet.com

Hi Jon. Reading your page has made me cry knowing that I'm not the only person suffering from this horrible pain.

On March 9, 2000 I slipped on the wet top step of a city bus while I was getting off. After slipping, I fell backwards and smashed my back on the step just below my waist and then continued to bounce down the steps on my rear until I landed on the sidewalk. I screamed in pain and couldn't get up on my own. Two passengers and the bus driver stayed with me until the ambulance came. At the hospital they took x-rays which were excruciatingly painful since I couldn't move my torso or legs without extreme pain. The x-rays showed nothing. They gave me a shot of Demerol and sent me home with prescriptions for Tylenol 3 (with codeine) and high dose anti-inflammatory drugs.

Stacie's bruise

I couldn't walk without pain because of where the step hit my back. There was a huge bruise which went away after a week or so and a bump which is still there. I didn't go to work at all for almost 3 weeks and when I did return, it was only for an hour or two every other day. Luckily I work at a big company which is unionized so they've been understanding that I can't work full-time yet. I'm currently working 5 hours 4 days of the week and thank god for benefits or I'd have no money. I'm still in pain but not as much as before where my back is concerned.

I went to my chiropractor about a week after the accident (I have suffered from upper back problems for over 10 years) and he did very limited treatments since I couldn't move very well. The moving table helped stretch the muscles in my back which hadn't been used much since the accident. Initially, the back pain was my worst symptom but for several months now my tailbone pain has been the worst. I couldn't sit down at all for about 5 or 6 months so I was standing while at work and my husband set up my home computer so that I could stand at it. Eventually, my feet would get so sore that I couldn't stand anymore. I have a condition called Plantar Fasciitis which was dormant for 5 years but since I had been on my feet so much since the accident, the condition had returned. Since the Plantar Fasciitis has returned (it's been just over 4 months), I'm sitting down a lot more so the tailbone pain is aweful. I found that using a donut cushion made my back muscles sore especially when travelling and I'd have to balance on it when the bus/train/ferry moved. I've stopped using it but reading your information has made me think that maybe I should start using it again.

I'm on 25mg of Vioxx for my pain but I still have pain all of the time. I get so down because of the situation and I just want my life back. I used to see a lot of movies but there's no way that I can sit in one spot for 2 hours. The most time I can sit at once is about 20 - 30 minutes then I have to get up and stretch. I've done physio, acupuncture and chiropractic treatments. Acupuncture helped my back pain initially but soon wore off and further treatments didn't work. For my rear pain, nothing has helped except not sitting.

Thanks for having this place to share our experiences. I hope you're feeling much better.

Updated 2001-01-19




Pain free at last

Stacie Pouh

I found your site about 3 months ago and have read all the posts time and time again, determined one day to post my story.

I have suffered tailbone pain for nearly 6 years. I, like many, assumed there was nothing that could be done. Finally, after about 5 years I went to see my family doctor. She suggested seeing a physical therapist to try to help. I did therapy for three months with no results. I just decided to give up and see what resulted. Another year went by and I could not take it anymore. I returned to see her and she said she would try to find a doctor to help me. She hadn't dealt with this before so she was unsure where to send me. After a few days she was able to find one doctor. who dealt with the tailbone.

He was a neurospine doctor. I went to see his associate first (that was standard for this clinic) he recommended a cortisone shot. Having a horrific experience with this I decided to see the surgeon. I underwent a coccygectomy on the 17 of September. My only regret is I didn't do it sooner. I almost decided against it after reading some of the unsuccessful results and my doctor had only done four of them and I would be the fifth. I'm so glad I decided to go through with it.

The surgery was a breeze compared to what I was going through. I am two weeks post surgery and I know it worked. We went for an hour drive and didn't have to slide my butt off the seat to get out. I was so excited. My husband, 24 hours after surgery, said he hadn't seen me get out a chair so easily in over 6 years.

If anyone has any questions or concerns please feel free to email me at kpouh@hotmail.com I would be happy to help in any way I could.

Sincerely

Stacie

Updated 2001-10-06




Need help

Sue - svartman@d.umn.edu

I developed pain in my coccyx Jan. 2000 (so have been battling this for more than 14 months now) and like others, have undergone several treatment options. I did not injure myself and don't know why or how the heck this developed. I first tried ibuprofen for a month--several per day per my physician--that did nothing. From there she put me on a prescription anti-inflammatory drug-- that also did nothing.

From there, my physician sent me to physical therapy. The therapist worked with me for 6 weeks--(I am still doing the exercises and stretches she showed me) and got no relief. Back to my physician for an x-ray. The x-ray showed no fractures etc. From there I was referred to an Orthopedic physician. He gave me an injection of cortisone and another anti-inflammatory prescription drug (this was April 2000). I got great relief for 2-3 months and you guessed it, the pain returned. I put up with the pain for several months and then sought chiropractic treatment. I recently finished up with that and no positive results.

Last week (March 30, 2001) I headed back to the Orthopedic doctor in hopes of getting another injection. He discouraged giving me another one and instead recommended the surgery. He has only performed a handful (which makes me very nervous) and also said it sometimes doesn't work. He also informed me that the healing process is anywhere from 3 weeks to several months. From reading other's stories, needless to say I am not ready or willing to undergo the surgery. I did talk him into giving me another injection of cortisone before I left the appointment, however, he warned me it may not work as nicely as the first one I received one year prior. He was right-- It's only been one week and I have no relief from this last injection. Now what??

Some seem to have gotten relief from acupuncture or massage therapy. These things I haven't tried yet. Is there a way for me to contact some of these folks who have? Any help you can provide would be much appreciated. I'm at my wits end--summer is coming and I want to ride my bike, canoe, and go to baseball games!

I'm a 47 year old female accountant who needs to sit for long periods at work and am very frustrated. I only have pain when sitting or turning in bed at times. It's the sitting that is driving me nuts! Walking, jogging or other forms of exercise (if not sitting) are all great.

Updated 2001-04-04




Gel cushion?

Sue Rauschenfels  srausche@d.umn.edu

I recently visited a new chiropractor and she mentioned that a new cushion made from gel may be on the market (similar to the gel that they put in bicycle seats for women). It is a cushion one could carry with them for airplanes, concerts, bleachers, canoes etc. Do you or any other folks know of such a product and where can I find one? Don't tell me about any "doughnut type" cushions - I've tried them all and don't work.

Thanks for any help you can offer-

Sue Rauschenfels

Updated 2001-12-19




Started with DNC

Had Surgery for a DNC, and the week after hurt so bad. Its been 16 months and I've been to 4 doctors, no help. I need sometimes help getting up. My lower back goes through spasms and I get tears in my eyes. I need some help.

Susan

Taken off  the web:

WHAT IS A D&C?

Dilatation is the dilating or opening of the cervix. This is done by inserting a series of metal rods of increasing diameter into the cervix until the opening is large enough to pass the curette (scraping tool) into the uterus. Another form of dilatation is to insert a laminaria plug (a seaweed rod) into the cervix. After six to 12 hours, the cervix will dilate sufficiently. The curette, which looks like a tiny spoon, is inserted into the uterus and it gently scrapes away at the uterine lining. The procedure takes about 20 minutes.

Updated 2001-07-28




Some great news for sore butts!!!!

Tanya

I damaged my tailbone on a water slide almost 4 weeks ago. Walking and sitting on hard surfaces were fine, but sitting in soft seats, lounges and driving my car were very painful. My regular doctor prescribed anti-inflammatories, which dulled the pain but didn't seem to aid repair of the problem.

Today, at the insistence of family and friends, I went to visit a chiropractor with experience of this problem. He performed a LOGAN PROCEDURE , which is an internal adjustment via the rectum. This sounds dreadful, but the instant relief is worth the embarassment. I am still a little sore, but after only a few hours I can already tell that the pain has gone completely. He did comment at the time that the tailbone was " way out of alignment", and the procedure only took a couple of minutes.

For long term sufferers of coccyx pain, maybe you should pick up the phone and find a chiropractor that performs this procedure. It's worth a try!!!

Updated 2001-09-24




I feel like I've had my butt kicked in Texas

Tony - tonydarl@flash.net

Link to update 2001-08-05

My name is Tony and I live in Dallas, Texas. I developed my coccyx problem about 2 years ago sitting awkward in my chair in front of my computer. I am 46 years old and in decent, physical shape. Never been under the knife, which makes it even more terrifying now that my wife and I are expecting our second child near the end of September. I am in a dilemma.

My first orthopedic doctor gave me three cortisone shots which helped for a while, but the pain came back. He said that he did not know if coccyx has a function, kind of like an appendix, and that he had not done any coccygectomy, but if I wanted he would take it out. I went for a second opinion.

My second doctor who is a reputable doctor in the Dallas area, so I been told, took some x-rays which again did not show much. He examined me briefly and laid out my options, 1) Referral to a pain management clinic, receive some shots, cortisone, Ganglion Impar Block and if they don't work, basically learn to live with it. 2) Remove it, but it is not a common operation. He has done 7 since he became a surgeon 7 years ago, 4 of which thought it was the best thing they had done. The other 3 thought they did not get any relief but not worse either. Recovery is about 2 months, he said.

I am scheduled to see him in a week which I would like to recommend anything possible, sit/stand x-ray, MRI to focus on the coccyx area etc to actually see what is wrong. I will also ask him to let me speak with some of his former patients. The pain clinic is also trying to justify a Ganglion Impar Block injection in the back of my coccyx while my feet are up in the air at their own facility. Not a pretty picture.

I am inches away to get the darned thing removed. I drive a full size Dodge truck (bench seats, it hurts to drive my wife's car) to work about one hour each way. Work 8 hours primarily sitting at my desk and I can even take 2 months off work/normal life for surgery. But that's about it. The success rate for this surgery, in my view, is a relative term. You have been getting better for almost 2 years. Compared to what you were going through before the surgery, that is a successful recovery. My understanding of recovery period on the scale of 1 to 5, 5 being worst is broken down into "three days of 5, two weeks of 4, two weeks of 3, four weeks of 2 and finally four months of 1". You know the saying, "if it doesn't have numbers and pictures, engineers don't understand it".

Being a civil engineer, despite what my first doctor said, I think the coccyx functions as a reinforcing structure to hold the ligaments in an area where it is subject to spreading/tension. Not much of a structure, however, if it is damaged and causing pain. Often removal of such structures would work better with minor life compromises. We have to expect a fairly long recovery period considering we are removing a bone-structure of approximately 1X1X2 inch. The surrounding ligaments would have to be stretched to fill that empty space. What is puzzling to me is that those who have had partial removal of their coccyx did not do any better.

I have only found one (Anon 7) person that has had the success I am hoping to get. If there is anybody else that has had the surgery with similar recovery period (2 months), please email me at tonydarl@flash.net on this site. I have had the pleasure of speaking with Adele and Greg of this site which helped a lot and they are going to refer me to some of those people that have had speedy recovery.

Update from Tony, in reply to an email direct to him. The email was from a man saying he had had part of his coccyx removed a year ago, with no success. A different doctor had now told him that he had permanent nerve damage. He asked Tony what he had decided.

I am sorry about your nerve damage. If there is any consolation, I am in the same shape as you without the surgery. Can't sit any more than 30-45 minutes without getting up for a while.

I did more tests, bone scan, sit/stand x-ray, nothing showed up, said my ortho. He suggested prolotheropy which is injection of some chemical solution in the tail. I checked Jon's web site and got scared about it. I went ahead and saw the doctor to whom I was referred to and he gave me some literature to read to help me make a decision. I haven't read them yet. I don't think that I am going through with it because he said it will strengthen the ligament and won't do anything for a sharp tail bone stabbing the ligament. So I have narrowed my choices to :

  1. live with it
  2. get a permanent nerve block
  3. take the darn thing out.

At this point my wife is 7 months pregnant and I want to be there when our daughter is born and wait until she passes the infancy hurdles, about a year if I can take it.

You can find some good reading materials about "nerve blocks" on the site. I have the luxury of being close to the brother and sister doctors in Plano, Texas that have had success with that. Cori from the web site was contemplating to have it done by them. He was supposed to call me to talk about it. If he does, I let you know. Better yet I'll copy this email to him and to Jon in case he wants to post it. Hope you don't have a problem with that. Nobody knows what's good for us but ourselves. If you are one of those people that have had an unsuccessful partial removal (so far) you ought to share the details with the site for your and other's benefit.

Updated 2001-08-05




Car accident

Tricia - Centerstg@aol.com

I was rear-ended in January 2001. I few days later, I started to feel sharp pains in my low back and tailbone. The pains are still happening 6 months later, and at times are so strong that I can't walk (curling up in a ball on the floor seem to help a bit). Between GP doctors, Chiropractors, Physical Therapists and Orthopedic Surgeons I have been in a doctors office just about everyday since the accident. The sad thing is that I feel that the doctors don't believe me.

See, I am a professional dancer. I teach and dance about 18-22 hours a week. I am (was) hyperflexibile. When doctors do evaluations on me, they assume that I am OK since my range of motion is a bit better than the average person. What they don't consider is my level of flexibility before the accident. Frankly, I am at wits end. My professional career and dream is at risk and I have no "proof" of my pain to help me with litigation.

If you or anyone you know has this problem due to an auto accident, please e-mail me with your story. It would help to know that others are having this problem too.

Updated 2001-06-24




Butt pain

Wendy

I haven't been to see the Doctor yet however I believe that I have injured, if not broken or something my coccyx.

On May the 4th some friends and I from work went out on another friends pontoon boat on one of the area lakes. Well, when we came up near "Big Bridge", my friend Pat said, "Hey, lets jump off the bridge" Of course I was up to it. My friend Pat had already done this many times before, but not recently. The last time she did was about 18 years ago. So here I am a 35 year old woman climbing out of the boat and up the steel ladder up to the spot where we were going to jump from. One of our friends estimated that it was a 50 - 60 foot jump from where we were to the water. For me this was a once in a lifetime thing. I of course will never do this again. I'm alive and don't intend to do it again. It didn't really hurt when I did it. I thought that my feet were the first thing in the water. I guess not. I guess my big ole butt was.

Like I said, this was on Friday the 4th of May and it really didn't start hurting until that Sunday after jumping. Well, it has gotten worse, much worse....like I've just read about all these other people...the pain when trying to stand is bad....I have a pretty good tolerance for pain, but this is ridiculous..... Today, was the first day that it has actually been painful driving...thank god that I stand or walk while I'm at work, that is one thing that saves me.... I guess I'll be going to see the doctor when I can get off work to go..

Updated 2001-05-20




Headaches can also be attributed to coccyx - cured by removing coccyx

Wendy

I'll try to keep this brief...

I began getting stabbing pains in my head that would last for only a split second. By the time I would yell out "Ouch" the pain would have already been gone. I sought out help only to be told that they were called "Ice Pick Headaches" and there was no cure nor did they have any idea how they came to be in the first place (what a waste of time).

Eventually the ice pick headaches became more frequent, and then I started to get real nasty headaches. These headaches got persistently worse and finally graduated to the status of "Migraine". Pulling my hair as hard as I could was the only way to rid myself of the pain ...temporarily. Well .....anyways.... About 5 years of gradually accelerating headaches turned into "Butt Pain". Serious, serious butt pain. I couldn't do anything.

As a vocalist it was very difficult to try and sing because of the muscular activity that is required. I was in my graduating year of college and well ...it was hard. Having no idea that the two were related (headaches and butt pain) I found out that I had Coccygodynia or Coccydynia. It was sort of weird how it was discovered. I was sitting in class (at college) and I couldn't take the pain anymore. I just stood up and said "Bill, I got to go to the nurses office cause I can't take the pain in my butt any longer!" (Bill was my teacher) He just sort of looked blank and said, "Okay." I went to the nurses office and of course the standard questions about "Did you have a fall?" or "have you been lifting anything heavy?" etc were all asked. Once that was all out of the way, she began feeling down my spine. As she went lower and lower, I began wondering how far she was going to go and if she was going to have to start talking dirty to me or something. She (luckily) stopped and said she felt something protruding out. She sent me for x-rays. My bottom two vertebrae bent in at a 90 degree angle and the third vertebra stuck outward at a 45 degree angle. It was the third vertebra sticking out that she could feel. It was also determined that it was something that I was born with because there was no apparent scarring of the bone.

I began a little research and found out that at least three other family members in the extended family tree also had coccydynia. One was my grandmother. It took her 98 hours to give birth to my dad. My grandmother always said it was because my dad was lazy. I guess she was only joking. So ..I went through the standard physiotherapy, then cortizone injections and then finally resorted to the surgery in the summer of '99. I did bleed quite a bit but it's in a place that doesn't relax enough to be able to clot very well. It all worked out in the "end" (ha ha). I have been Butt pain free, migraine pain free, as well as "Ice Pick headache" free ever since. I even tried snow boarding and fell on my butt very frequently with no shock waves of pain running up my spine!

Please note that only the bottom two vertebrae were removed. The third vertebra contains all the nerve endings and all the surgeon could do was file it down as far as he could. It still sticks out a bit, but not as much.

So much for keeping this story brief. I really tried. Hope this helps others.

Wendy V.

Updated 2001-08-25

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