Personal experiences of coccyx pain in 2003

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.

Anonymous - Update - Ehlers-Danlos Syndrome, hypermobile type

Stefan - Update - Pain disappears when buttocks are separated

Mike Davison - Update - Success with the surgery

Dina - Update - Success with surgery

Helen Buckthorp - Update - After 13 months of pain, manual therapy cured me in one hour

Kirsten - Update - Pregnant and receiving injections - not related to childbirth after all!

Jen - Update - Please help, I can't take it any more!!

Michelle - Update - Fell off Water Slide.....OUCH!!!!!!

Linda - Update - Coccyx removal

Denise - Update - Fractured coccyx during childbirth

Anonymous - Update - There are excellent alternatives to surgery!

Anonymous - Update - Losing weight made the coccyx more painful

Colin - Update - Cortisone injection seems to be helping

Sharon - Update - Fell asleep in the bath

Brenda - Update - Self-manipulation of the coccyx

Sally - Releasing caught nerve ends

Laurie - The doctor refuses to give me any more medication

James Taylor - My very first broken tailbone

Caroline Martin - Coccydynia after gastric bypass surgery?

Maurice - Jumping injury

Kevin - NMS Solutions helped me immensely

Tony Ryan - Fully recovered after 3 months of painful coccydynia

Manuel - It works!

Anonymous - Update - Removal of pilonidal cyst

Whitfield - Painful sitting and walking after falling down stairs

Jennifer - Had pains in the butt for as long as I can remember

Erin - Help for women with coccyx pain from having a baby

Kim - Temporary fix

Kim - Protruding tailbone

Kelly - Surgery failed, rhizotomy a success

Anonymous - Found a chair that helps

Dorcas - Tailbone pain cured!!!

Deborah - Old tailbone trauma causing problems

Helene - Deformed coccyx - removed!

Karen - Had coccygectomy after other treatments failed

Jody - Operation by inexperienced doctor

Casper - Coccyx doctor recommendation for Finland

Anonymous - Could my fall 35 years ago be the cause of my pain?

Sylvia - Tried everything except surgery

Shar - Doctors acted like I was making the pain up

Monica - Doctors in the Netherlands?

Anonymous - Fell down the stairs a year and a half ago

Rose - Osteopathy treatment

Karen - Update - Bone scan after numerous other scans

Peggy - Born with a long coccyx

Jim - Fell on my wazoo skateboarding - Shapiro made me 90% better

Hillary - Pain came back six years later

Spike - Ulcerative proctitis? IBS? Arthritis?

Gail - Long and deformed coccyx

Donna - Update - I've fallen and I can't get up!

Stubborn Patient - How to get treatment -- my story

Ammon Lovell - Update - Inhaling helium made me pass out

Tim Naus - Need some help badly

Serge - Acupuncture worked for me

CMA - I feel like I have given up on ever getting better

Mada - Coccyx pain without trauma

Anonymous - Will the pain ever go away?!?!?

Nancy - Doctor ordered mammogram (?)

Nad - Muscle spasm caused the pain

Mark - Not decided yet

Marina - Update - Broke my coccyx 3 months ago. I can't take the pain anymore!!

Katie - Jumping off 70 foot cliffs

Jen - Update - Dislocated and fractured

Angie Gray - Travel tips (lying down!) UK to Dr Maigne, Paris

Ooouch - Power boating accident

Anonymous - Pain and a lump or swelling

VB - Sudden pain in the night

Marian - Any doctors in London or surrounding areas?

Jon Ellingboe - Fell backwards in the street, got a bruised tailbone

Hope -Update - Found "my fountain of youth" with coccyx removal

Cheryl - Make a tailbone cushion from kids' swimming noodles

Sharon - Update - Broken T-Bone and surgery to come

Bob Knetl - Coccydynia resulting from unrelated surgical procedure

Anonymous - Coccyx pain after childbirth

Sue Allen - Pain came and went and came back again

Marcel - Could this pain be caused by my coccyx?

Leah - Coccydynia and future children?

Susan - What can I do now?

Rob - I am sure my coccyx is broken

Melissa - Removal of pilonidal cyst caused scar tissue and pain

Malinda - Looking for doctors in Florida

Krys - Will I be able to cycle again?

Antonina Breen - Thirteen year sufferer

Anonymous - I can't think of anything I have done to get this

Wes Harper - Happy ending from nerve stimulator

Anonymous - All terrain vehicle accident

Anonymous - Coccyx bent to 90 degrees

Anonymous - Recovery after two years!

Steph - In need of HELP

Nicki B - Cindy please reply to Nicki B.!

Leslie - Stationary bicycle caused the pain

Angie - Update - Going in for surgery

Susan - Surgery to remove tissue caused a fistula

Pollie - Need a comfortable cushion

Lisa - Roller blading spill

Katie - Update - Scared for doctors appointment

J Barnard - Rectal discomfort

Annie - Any sufferers in NJ, USA?

Kay - Coccyx pain and incontinence

Maggie - Bad fall and terrible 'bruised' feeling

Jack - My experience and theory: post-herpetic neuralgia?

Michelle - Worst pain I've ever experienced!!!

Lauren - Persistent pain - going in for surgery

Elizabeth - Cosmetic problem from tailbone injury

Alan - Pain in soft tissue around coccyx area?

Rosamund - Persistent coccyx pain

Nancy Abdo - Ovary removal left me with tailbone pain that won't stop

Lisa - Fell down the stairs

Kathy - Coccyx doctor in Pittsburgh?

Jean - Pain, pain, pain

Elizabeth - Tailbone - lower legs - feet

Angie - Update - It started with a sneeze

Alex - Tailbone pain from furniture assembly

Debbie - Update - Anal spasms and tail bone pain

Sarah - Update - Seasonal coccyx disorder

Anonymous - Ray of hope

Nicola - Does anything actually help?

Anna - Despairing from Kent

Angelika - Hit by a racing dog

Parker King - Acute coccyx pain

Lance - Excessive movie watching as cause of coccyx pain?

Vicki - Injection worked!

Jayne Gerrard - Piriformis syndrome post surgery

James Morris - Coccyx treatment - just had the injection of corticosteroid

Anonymous - Update - Sleeping position caused pain

Rebecca - Thank God I am not alone

Pamela Bishopp - Office chairs with coccyx cut-out - great for home or office

Lori - Can anyone recommend a doctor in the Seattle or Bellevue area?

Bob Knetl - Update - Coccyx cutout chairs

Dee - Tailbone pain after bone from hip removed

Anonymous - Tailbone pain and pregnancy

CJ - No pain when sitting, very painful going from standing to sitting

Anonymous - Pain in the end of the tailbone

Tasha - Huge pain

Rebecca - Childbirth complications

Ashley Loomis - Tailbone removal

Anonymous - Finding a doctor in Washington

Yvonne - Tailbone had done a U-turn to point outwards

Patrice - Prozac and Dr Sarno's book

Nicki B - Tailbone pain caused by rare tumor called chordoma

Kristy Chapman - Pain for 5 years, now going to have tailbone removed

Gogeomol - Fell over the cat

Stacy - I can't sit and I'm at my wit's end

Melissa - Pregnancy and childbirth led to coccyx pain

Matt - I backed into a water heater

Donna Gibson - Wanted to share it at last

Anonymous - I can't sit or stand for long after a fall




Pain in soft tissue around coccyx area?

Alan - weland@asde.net

I'm a 36 year old male who has had pain in tail bone area for 3 months now. I have been diagnosed with coccydynia but there are symptoms that I have not heard of anyone else having & this confuses me. I have pain that feels like spasms that run along side the tail bone & the pain will switch from one side of the tail bone to the other.

Has anyone else experienced this pain besides me???

I have had injections under x-ray that helped some but still have stabbing pains and spasms. My next step is surgery but I'm a little confused with the pain switching sides & spasms. If anyone has had similar pain please let me know. It will make me feel more comfortable that surgery is right thing to do.

Thank you,

Alan

Updated 2003-05-04




Tailbone pain from furniture assembly

Alex - Alex.X.Camacho.-ND@disney.com

OK, so I was putting together an IKEA furniture unit together yesterday and this morning I woke up with a severely painful tailbone. What gives?

The only things I was doing differently yesterday was bending over and kneeling a lot to put up the unit. It took me forever to put it up but who would have thought it would not only make me tired, but that I would wake up with so much pain. I am going to give myself another day to heal up? I have sympathy for all you who suffer from this pain regularly.

My symptoms are the following. I woke up with the pain in the morning. I can sit with no problem. However, when I get up or walk around I have an acute pain in my tailbone. Does anyone have a clue what is wrong with me?

Regards,

Alex

Updated 2003-04-27




Inhaling helium made me pass out

Ammon

Original posting, 2003-08-17:

When I was 13 I did something really stupid. I was at a friend's house and I sucked almost an entire balloon of helium. Well I passed out and WHAM! I landed right on my tailbone. I'm a big guy and at the time I probably weighed 180-200 pounds. When I woke up I found myself in excruciating pain. I couldn't walk straight for weeks. I hit my head on a brick too, but the tailbone pain just drowned it out.

Then little by little the pain went away. For almost 10 years I haven't had hardly any discomfort. Yeah when I sit with a lot of pressure on my tailbone it starts to get sore, but never for long, the next day I feel great. But for the last week I have been in so much pain. I have no idea where it came from. I didn't do anything to disturb it. It doesn't hurt to walk or sit down as much, but when I stand up or sit down, it's a killer.

From what I've read on this website I've gained a lot of knowledge. I thought that I would just tough it out, but it's not worth it. I can't do anything. I finally decided to call a doctor or chiropractor. Thanks for all your helpful insight and tell your kids to stay away from helium!

Update, 2003-08-31:

Since I last wrote I have met three times with Dr. Grant Shapiro of Tempe, AZ. I first met with him on a Friday and the pain was almost unbearable. He took some x-rays and found that my coccyx was pulled back (I think it's called the posterior direction or something like that). Needless to say, I was happy that there would probably be no need for internal manipulation.

Dr. Shapiro adjusted me several times and at first I felt a little better, but not much. He also recommended that I keep it iced and that I purchase a coccyx support cushion. I looked everywhere and I couldn't find one. I had to sit in the foyer at church practically on my side so as not to disturb it too much.

Little by little I had gotten better. By the time I went back to Dr. Shapiro on Monday, I was feeling much better. The pain was bearable and I could actually sit up straight without too much pain or discomfort. I told him that I couldn't find a cushion and he got me one that he had at the office. He massaged the tissue around the coccyx, which hurt a little but made me feel a lot better. I think that was the step that made me feel the best.

The coccyx cushion helped, but I had to pull the slit open a little bit more than it was. It was aggravating the muscles around the coccyx. I actually hurt more when I sat on soft surfaces than on hard ones because with soft surfaces there's no support and the pressure was distributed over the entire area.

That Friday I was probably up to a 7 or 8 out of 10. We met, he adjusted me some more to relieve the tension from my spine and he said that we would meet on the next Wednesday.

Now we are meeting again tomorrow and I am feeling fine. I am not where I was before, but slowly I am getting there. I am very thankful that I came to this website, found out that I needed to do something and found Dr. Shapiro's name.

Ammon Lovell




Hit by a racing dog

Angelika - bobanka@aol.com

I am a sixty year old female who was hit in the hip/buttocks area by a racing 70 pound dog. This happened over a year ago and I have been in extreme pain ever since. I am currently on morphine pills.

I have had injections in the S2 S3 S4 nerves as well as the right sacroiliac joint and nothing helped. The pain I feel comes mostly from the anus area.

The pain is at its worst when I stand or walk and I get some relief when sitting or lying down.

The doctors don't know what to do next. If anybody has any suggestions I would be extremely grateful.

Thank you

Angelika

Note from Jon Miles:

Because sitting down bring some relief, this doesn't sound like a coccyx problem. It could possibly be a muscular problem.

Updated 2003-03-30




It started with a sneeze

Angie - aughie@hotmail.com

Original posting, 2003-03-30:

I can't believe I found this site. I sit on one hip as I write this.

My tailbone pain started last night as I was finishing up at work. I was putting away some things and I sneezed suddenly and when I did I felt a pop in my tailbone. It was the most excruciating pain that I have ever felt. I went to the doctor and was told to apply ice and given pain medicines and anti-inflamatory.

Will this get better? I cannot sit and suffer the most when standing up. I have never injured my tailbone to my knowledge. Has a sneeze ever caused this for anyone else?

Update, 2003-04-27:

It has been a month ago since my pain began. I have been taking anti-inflammatory medication twice a day up until last week. I wanted to try and stop taking medication to see if my condition was going to get worse. I am a lot better but still experience some pain when sitting and going from sitting to standing. I have hopes that in time that I will heal completely. I seem to do better if I don't do things that aggravate it such as sitting for long periods.

I have discovered a remedy for my job as I am required to sit a lot. I took a suggestion from a co-worker and found that a child size blow-up pool ring gives me the most comfort while sitting at my desk. I know that sounds strange but if I use it constantly while sitting, my pain subsides for days at a time. I tried the donut type cushion from the medical supply but it did not help at all. I paid $1.00 for the pool ring at Fred's Dollar Store and have truly found relief.

It is my belief that I am healing but I guess I will have to wait and see. I would really like to hear from someone if they have ever had this happen to them before. I haven't been back to the doctor since my first visit and am wondering if I should just wait it out for a while. Any suggestions?

Angie




Going in for surgery

Angie - acostalas@msn.com

Original posting, 2003-04-20:

My coccyx pain started after having a pilonidal cyst removed from that area. Once the cyst was removed it left a void and my coccyx was directly underneath the skin. It was already painful for me to sit after the cyst removal and so I attributed the pain in the bone to that, however when the pain in my tailbone was still present after I healed from the surgery I knew it was something else. There wasn't any damage to the tailbone it was just that now there was no tissue cushioning it from whatever I had to sit on. My coccyx is very prominent but I always thought that was normal. After two sets of x-rays it was discovered that my tail bone doesn't curve as much as most do and the very tip of it curves slightly to the right. One of my biggest problems was that occasionally when I would get up from sitting or laying down that my coccyx would get hooked on the scar from my previous surgery! That was excruciating.

I saw two orthopedic surgeons before I found one that had actually performed a coccygectomy. The first one told me to gain weight or get it removed. He wasn't nice at all so I went for a second opinion, the second wasn't familiar with the problem (even though I had been told that he was when I made the appointment) so I finally found a nice Dr. that was familiar with my problem, he was also the only doctor that even bothered to take a look at it! He says that it's a fairly straight forward procedure and it will be out-patient but that I can stay overnight if I'd like. Surgery is scheduled for the 29th of April and I will write back to let you all know how it went for me.

First update, 2003-05-04:

I was scheduled for surgery on April 29 but it was postponed due to my insurance company not know what a coccygectomy was and so declining coverage. My doctor had to call their doctors and explain the situation, they wanted to make sure that it was a necessary surgery and not for cosmetic reasons (who could think that someone would go through this for cosmetic reasons, you can't even see the thing!!). So now I am scheduled for May 06 and will write on my progress as soon as I am able to. I read one account on here that was a bit like a journal and I think I will try that as well, it gave me a good idea of what to expect.

Second update: 2003-05-25:

I went to the hospital for my coccygectomy on 4/6/03, surgery was scheduled for 10:30 am but I didn't go in until 3:30 due to a mix up with the scheduling. I was originally scheduled for out-patient surgery but meeting with my Dr. before I went in he said that he wanted me to stay overnight so that they could monitor me and make sure that everything was ok. I finally got wheeled into the operating room and was put under general anesthesia. The surgery took 50 minutes I think and I woke up in recovery not feeling very good at all! Some unthinking nurse laid me on my back! I was in a lot of pain because of that and couldn't turn myself onto my side, luckily someone came along and helped move me onto my side which was more comfortable. They gave me a shot of Demerol for the pain because it was severe. That knocked me out for quite sometime which was nice.

When I woke up I was surprisingly ok, there wasn't much pain at all. It was most definitely uncomfortable but was certainly bearable. I had to shift from one side to the other about every 20 minutes that I was awake. I was able to get some more sleep though. Sometime in the night they brought the bedpan around and maneuvered me around on the bed to use it. My body just wasn't going to have this so I asked to go use the bathroom instead. Here I anticipated much pain, having to get out of bed and walk there and then sit down and then walk back. I was again very pleasantly surprised to find this rather easy, I rolled onto my stomach (with the help of the nurse) and shuffled my way to the bathroom. There was very little pain or discomfort in the whole process. I was thinking that it might be due to some of the pain killer still being in my system but when I woke up again in the morning and got ready to leave there still wasn't much pain. I walked out of the hospital and walked up to my 3rd floor apartment without a problem.

I must say that after reading some testimonials on this site I was braced for a very tough recovery but it has been very easy! My biggest problem is that my hips hurt from laying on them so much!! I was prescribed Vicadin for the pain of recovery and to date have only taken two pills, I don't need them :-) I have been up and walking around, since the day I came home, without a problem. My Dr. must be some magician because I've had a very easy time since the surgery. They did leave the top portion of the wound open to drain and in fact put a drain in it (looked like a drinking straw to me) that was removed by the Dr. two days after the surgery and even that was painless. When I went to see him to have that removed and for him to have a look he told me that I definitely needed this surgery because I had a large bony protrusion on the end of my tailbone (he didn't call it a bone spur but it might be the same thing) I also had another pilonidal cyst that was growing over the bone (they removed this as well).

I went for another follow up visit yesterday and he said that I'm healing very well. The incision itself was about 2 1/2 inches long and they left one inch of this open. There is now about 1/2 inch of it still open and the Dr. predicts that this will take about two weeks to close. There isn't any packing in it and I only have to wear a gauze pad taped down over it. The drainage is less and less each day.

I am sitting now, on a donut cushion, as I write this. I was able to sit on the cushion as of the 15th, just 9 days after surgery! I still can't sleep on my back though. I am going back to work on the 28th, 3 weeks after surgery, and that is a relief to me (and my boss!) Boredom is my other problem :-)

A note for anyone in the NYC area who is looking for a Dr. for this problem, mine is great! His name is Dr. Haher and he is the Chief of Spine Surgery for Lutheran Medical Center. I will say though that he is skeptical of people needing this surgery so if you go to see him be prepared for that. He didn't think that I had any other option other than surgery when he first saw me and after the surgery he knows that I had to have it done. But he said that most people who think they need it really don't. I was bothered to hear him say that but given that I had such a hard time finding a Dr. that was even familiar with my problem I didn't let that statement bother me, he still did a fantastic job.

If anyone would like to email me to discuss the surgery and my experience please feel free to, my email is acostalas@msn.com. I hope this gives hope to some of you who are contemplating surgery, though I don't think mine was a typical recovery given what I've read here and other places. I'm so thankful for finding this site and hope that all you who are suffering find relief!

Angie




Travel tips (lying down!) UK to Dr Maigne, Paris

Angie Gray - AVKGray@aol.com

Desperate to see Dr Maigne in Paris, but unable to sit, I needed to find a way to travel lying down - and I did! Here's how:-

CAR - hired a Mondeo estate so I could lie in the back. Used large foam mats to lie on and big cushions either side to stop me rolling about. Partner also strapped me down using a webbing luggage strap (anchorage points are built into the flat floor of the car) - again this helped to prevent rolling about and, we hoped, would count as a seat belt in case the police stopped us (they didn't!). Plenty of pillows and cushions meant I could relax as much as possible (I even drifted off to sleep during one leg of the journey). July 2003 - 5 days car hire - 300 (+ petrol).

FERRY - although going by Eurotunnel would be quicker it would mean staying in the car for the whole journey; wanting to break the travelling - plus determined to enjoy it too! - we chose to have a cabin onboard a ferry from Portsmouth to Le Havre. Crossing takes 5.5 hours ( you have to arrive about 1 hour before you sail). Sailed with P & O Ferries, and rang to explain I couldn't walk far. They were happy to allocate a cabin near a lift but said to mention this again when we checked in at Portsmouth. Doing so, we were given a disabled sticker and, driving onboard, directed to a spot right next to the lift. It was then only a very short walk to the cabin with comfy beds (and a toilet!). NB. Queuing to get on the ferry you could be 100-200 metres from the facilities block so it's best to arrive as early as possible. July 2003 - 3 day return - 2 people + cabin 118.

FRANCE - Autoroutes. We chose to use the autoroutes as much as possible. These do involve tolls but are much straighter and smoother to drive on and therefore mean less rolling about (the same is true with the UK motorways). Le Havre to Paris took about 2.5 hours. July 2003 approx toll costs 20 both ways.

PARIS - stayed at the Inter Hotel Prony - just a few doors away from Dr Maigne's consulting rooms! The hotel does have a lift but it's on the first floor. Patron very helpful and speaks excellent English. Rooms fairly basic but clean and cheerful, with comfy beds and a bathroom. Used private car park 300 metres away, July 2003 14 per day. July 2003 - twin room + bathroom approx 70 per night.

X-RAYS - Radiology clinic is about 4 miles from the Inter Hotel Prony. We parked outside (which meant I could lie down until they were ready for me), the sit/stand X-rays were developed there and then and given to me to take to my appointment with Dr Maigne that afternoon.

CONSULTATION WITH DR MAIGNE - was quite happy for me to lie on his doctor's couch throughout the appointment - I'm sure he's seen this before!

Such a lovely man, again with excellent English, he immediately identified the problem and so, after 12 years of increasingly debilitating coccydynia, I at last have a proper diagnosis - the largest spicule (bony growth) Dr Maigne has ever seen, plus the coccyx doesn't curl properly when I sit! Next step is an MRI here and then another trip to Paris for the coccygectomy.

As you can imagine, I feel as if this trip has turned my life around and given me hope for the future. I'm just so thankful to have found a way to get there and hope others will benefit from my lying down travel tips!

See follow-up posting by Angie.

Updated 2003-08-10




Pain in coccyx, with joint stiffness and pelvic pain that comes and goes

Ann

I just started having this problem in July 2002, after losing 45 lbs. I see that sitting for long periods of time could be culprit, which I am guilty of doing. However I find the combination of problems takes me out of circulation when it occurs.

It seems to come and go.. a few days of pain.. sometimes longer.. and then it goes and I feel great. Also when I am in pain it affects my appetite and sense of smell... I smell everything more acutely. I seem to be hungrier .. it almost seems as if having something in my stomach is 'soothing'. I also find the pain affects the joints in my hips but this could also be from sitting.

I find a hot bath is very therapeutic and also ibuprofen helps. The thing that puzzles me is why it comes and goes.. I wonder if anyone else has experienced this. Maybe it is periods of sitting too long. I also had a bad fall on my tail bone several years ago, on ice/pavement.

Updated 2003-02-02




Despairing from Kent

Anna - cresswell-forrester@blueyonder.co.uk

Hi, my name is Anna. I live in Kent UK.

I have had constant coccyx pain for 5 months and I am despairing of ever having any relief. I can't really recall falling on it or any trauma, but I may have had a slight bump a few month before that.

I have tried anti inflammatories, paracetamol and codeine and tramadol but none of them touch the pain. 2 weeks ago I saw a consultant privately and had a steroid injection.......so far......nothing...no relief at all. Is this normal? He didn't do any x rays and said that the injection was virtually guaranteed to help......

I am getting depressed about my situation. I am self employed and my business is suffering as I can't sit to work, so now I am getting stressed financially.

I have used a coccyx cushion but it doesn't help.

I have seen 5 chiropractors and 2 osteopaths...I am now trying cranio sacral treatment. Does anyone have any experience of alternative approaches having helped? One chiropractor said that there is an internal manipulation that can help, I am too embarrassed to go through with this although I am so fed up I may just have to. Can anyone share with me what it is like and what happens....and if it works...

It's my wedding anniversary and I have tickets to Phantom of the Opera tomorrow night but I don't think I can possibly sit through the performance....last time I went to the theatre I literally had to be pulled out of my seat... Anyone want to buy a ticket????

It is nice to know I am not alone, but we all seem to be suffering so much. I'm not sure I could adapt to being in this much pain for the rest of my life. I have a very special (long haul) holiday booked for next Xmas.......at what point do I decide to pull out of the holiday and get my money back? I have until September.........

arrrrrrrrrrgghhhhhhh!!!!!!

Thanks

Anna

Updated 2003-04-06




Any sufferers in NJ, USA?

Annie - ORorke6@aol.com

Please, Can anyone help me find a coccyx surgeon in N.J. I am desperate I can't find anyone to do the DYNAMIC X-RAYS either!

I am in so much pain. My orthopedic doctor doesn't believe in surgery or even shots for that matter! Cortizone pills...

I need to find a specialist who deals with the coccyx! Please if you can help me e-mail me.

Annie

(Note - Annie has now seen that there is a New Jersey doctor on the list of doctors and other specialists, but would still like to hear from any sufferers in New Jersey.)

Updated 2003-05-18




I can't sit or stand for long after a fall

Anonymous

I fell on my back stairs 11 weeks ago, and landed on my butt, but I broke my right ulna because of the way I landed with my arm. I've had back pain for several years, but over the past week, it's gotten really bad to the point that I can't sit for more than 15 minutes without bad pains in my back and hips. It hurts so bad that it brings me to tears and it usually takes a lot to make me cry. So when my hips start to hurt, I stand up, and then I can't stand but 15-20 minutes and I have to sit down. When I sleep, I have to constantly change position to be comfortable. When I'm on my side and tuck my tailbone under, it hurts, or if I tighten my butt cheeks it hurts. It feels like I need to suck my spine in and stick my butt way out, but it still hurts in my hips.

I go to the doctor tomorrow for a follow-up on my arm and to check the back, but what should I be asking him? He's an orthopaedist. Could this pain be from my fall? Is it possible for my tailbone to have been cracked or something and not realize it because my arm was hurting so badly?

Help!!!!

Updated 2003-01-05




Finding a doctor in Washington

Anonymous - lmhamel46@hotmail.com

I was in a low impact motor vehicle accident in March 2000. I couldn't sit for a month or so and then with great difficulty. I was misdiagnosed until November 2002 when a very keen x-ray tech took the right films and showed the coccyx going in at between 70-90 degree angle.

I had been told I had back strain, SI joint troubles (and had cortisone injections that did no good and the last one did damage). I have severe inflammation around the sacrum etc. I can now sit, but have to be careful and sit forward on thighs, left cheek, with my butt over the crack in sofa etc. You get the picture. Long story-short version.

My coccyx is now somewhat demineralized and I'm not even going to try any sort of manipulation. I need to find a surgeon who is willing to remove this thing. Does anyone know of any surgeons in the Seattle area who do these? I know the trend years ago was to remove them, then they've come full swing again and the younger doctors seem to be hesitant about this procedure.

I KNOW this needs to come out, the inflammation is demineralizing the bone and the pressure around my sacrum is so intense at times that I'm completely immobile and prone. I'm an avid ocean kayaker etc and can't drive for more than 40 miles before I'm in quite a bit of pain from inflammation etc. I live in Alaska and we normally drive 200 miles in a day to even fish!! HELP

Updated 2003-02-02




Pain in the end of the tailbone

Anonymous - lizzi@cpsed.net

I have been experiencing tailbone pain on and off for the last 6 months.

At first, it occurred about once a week, it seemed to happen the day after I took a long bath where I would put my feet up and lean on my tailbone. My husband did notice at times a slight bruise (we chalked it up to the hard tub, length of sitting and feet raised position)

Well this went on for about 4 months.

Now I am not chalking it up to the tub, because we moved 2 months ago and we only now have a shower . . and lately I have noticed that when I am laying in bed (head raised with 2 pillows) I feel pain in the tailbone. I reach to try to feel exact location of the pain and I lead myself to the end of the tailbone (as if it sticks out like a ball) I push on both sides, but feel nothing in the cheeks of my bottom. There is an exact pain, no bruising anymore. Now I am going to try to rearrange my bedroom, so that I don't need two pillows, I don't think that will help.

Any advice?

Updated 2003-02-09




Tailbone pain and pregnancy

Anonymous - jennslusarz@hotmail.com

I am 35 years old and have been experiencing varying degrees of tailbone pain for about 2 years. My tailbone has always been prominent, but had never caused pain. I did not do anything to cause an injury. When I started having pain while trying to sleep at night, I finally complained to my primary care doctor about a year ago. She thought I had a cyst and referred me to a General Surgeon. The general surgeon recognized the problem as my tailbone and referred me to an orthopedic surgeon. An MRI and x-rays indicate that my tailbone is elongated and curves to the right side. The doctor recommended changing my habits (the way I sit, sleep, exercise, etc), and will only consider surgery as a last resort.

My husband and I would like to start a family in the next year. After reading some of the stories on this site, I am terrified of going through childbirth with my tailbone as it is. I discussed this fear with my orthopedic doctor, but he does not believe that it will break or cause any problems during pregnancy (a statement I find hard to believe).

Has anyone else had tailbone pain BEFORE becoming pregnant? If so, what can I expect during pregnancy and childbirth if I don't have it removed?

Updated 2003-02-16




Sleeping position caused pain

Anonymous

Original posting, 2003-03-02:

I checked out this site a couple of weeks ago to find out what might be the cause of my coccyx pain. 

I realized that I usually sleep in a crouched macaroni position. I think that may be the cause to my coccyx pain because when I changed my sleeping position to laying straight flat on my back, my coccyx pain stopped.

So maybe others can try this too. 

Reply from Jessica, 2003-03-16:

Just replying to Anonymous on her message about improper sleeping positions.

I sleep in a macaroni position as well. I find it hard to lie straight on my back because I find that I over stretch my back overnight and find my back sort of elongated when I wake up in the morning. I can't sleep on one pillow because it feels too flat so I sleep on 2 instead. But then that bothers my neck. It just seems as if I've tried about all different types of positions for sleeping and if its not my neck its my back. But my back is killing me now. I cant sleep because it hurts, I find it hard to roll over to my side, I cant sit for a long period, I can't arch my lower back at all, can't put on my socks.. can't stand for long periods . . to the point where I need someone to pull up a chair for me. I've yet to see a doctor for it. I hope its got something to do with my sleeping positions. It just happened today when I woke up from sleep. It is definitely not a pinched nerve!

Kinda scared. Just wanted to share my experience.

Jessica




Ray of hope

Anonymous

I've been battling tailbone pain for 10 months, after a college basketball career with many falls but no pain. I am writing to describe the lessons I have learned.

I ran into this site a few months ago and a lot of what I read here proved to be true one way or another. In a matter of three months I've gone through two doctors who were convinced I was making this pain up. So I am about to move on to the third doctor. With or without a believing doctor during these 10 months I've discovered ways to diminish the pain, cope with it and I am getting close to understanding my pain.

Two weeks ago I printed information from this site and gave it to my doctor. After a few months of poking and probing and no suggestions from my doctor I was about to see him again. Two days before my appointment I decided that I was going to make an informed suggestion to him, and depending on how he was going to take it I was going to stay or go. Before I went to see him I prepared a speech. I went in, gave him the piece of paper and told him a co-worker (an MD himself) suggested I take Vioxx. The doctor said "your x-rays don't show anything so you don't need an anti-inflammatory." I insisted that I have to "try something, anything that's not a narcotic!", and he insisted on his idea that I have a psychological problem.

I knew I wasn't going to go back to him but I walked away with two prescriptions. One for nortriptyline (tri-cyclic anti-depressant, usually prescribed in small dosages for chronic pain) and one for Vioxx. Within an hour of the first Vioxx my pain diminished greatly. By the second day I didn't have pain anymore. By the end of the first week I had some pain after sitting for long periods of time (still using a special cushion). Today, two weeks later, some pain is here again, mostly because my job as a mental illness and substance abuse therapist requires that I sit a lot.

I still have a ways to go but I am determined to win. I have learned that my pain is the result of constant inflammation around the tailbone. Vioxx, as a very effective NSAI takes down the inflammation, diminishes the pain, and some days wipes it off completely.

The anti-depressant helps me cope with the stress of constant pain. Stress increases my pain. Depressants, such as alcohol increase the pain. PMS also increases the pain.

Diminished pain lets me forget to protect the affected area, which at its turn causes more inflammation and more pain. So I have learned to not take pain relief for granted. I try to get up every 15-30 minutes when I can, and to always use a cushion (at first my fiance threatened to call me at work every 15 minutes to make sure I get up... ). I also practice proper sitting exercises, as taught by a yogi.

While sitting during yoga I realized that I didn't have pain, because I was actually placing most weight on my sitting bones (try sitting in a chair and press your tailbone back until your lower back curves and your tummy feels like it's about to sink between your legs). I realized that my pelvis and hips are not flexible enough to naturally sit like that in a chair. When I sit I put most of my weight back on my tailbone. Yoga helps me increase flexibility so that I can naturally sit with my body weight placed forward on my sitting bones, rather than on the tailbone. Yoga also helps strengthen and relax the back muscles, which naturally results in a better positioning of the body in standing and sitting.

With diminished pain I can tell exactly where the pain is and how it feels. I am sure I know the exact spots where it hurts.

I carry my cushion around, and I make light of it. My co-workers joke with me when I misplace it and have to ask them, "have you seen my butt cushion?" I should probably get their signatures on it just as one would get on a cast.

So far I have been treating the symptoms and not the original problem (the inflammation on the tailbone is both a problem and a symptom of the original problem). So I am changing doctors again. I am still looking for the one who will believe that I feel pain and I am not making it up.

Thanks to this site and the people who shared their stories I had the tools to take control of my problem, especially when my doctor didn't cooperate.

The battle doesn't end here and I will fight it to the end. In my profession I learned that every drug therapy has a life-span of about 5 years, and then something more promising comes along. Considering that there is a large number of possible therapies, each 5 year cycle can start tomorrow, and another the day after, the month after, the year after. All we have to do is find those therapies, and not get discouraged, because another cycle might start tomorrow.

Updated 2003-04-13




Recovery after two years!

Anonymous - crawfishlvr@yahoo.com

First... Thank you for this informational site and the age of the internet. This site was the beginning of relief and comfort both mentally (NO! Coccyx suffers aren't going mad) and physically.

I broke (Yes, a complete fracture with a nice s-curve jam at the end) my tailbone in an extremely nasty fall two years ago during a rollerblading incident. I must have been speeding down a steep hill about 30 feet high at travelling at a speed about 55 mph. At 32 years old, I thought I was invincible. Wrong! I bounced not once on my tailbone, but several times before I finally rolled on my side. Yes. Most doctor's say "There's nothing that can be done. Take some painkillers and sit on a donut". The first orthopedic said I would be in perfect shape and be ready to be birthing babies in 12 weeks. Was he ever wrong.

I encourage all people to research their tailbone problem as much as possible and seek a good doctor before any spinal injection or surgery. It took me three doctors before I finally read this website and contacted Dr. Steven Dennis in Newport Beach, CA. His schedule was completely booked for two months. However, I was lucky to be referred to Dr. Alexander Francini. He is a very kind and considerate doctor who explained my x-rays and my options very thoroughly. I wanted to try all options besides surgery or injections, since those I knew would only alleviate the problem but not fix it. I selected to try physical therapy with intravaginal and intrarectal manipulations with Robin Christenson at Pacific Coast Physical Therapy in Newport Beach, California. (949) 475-5777 (see the list of doctors and other specialists).

After the first two visits there was an immediate relief. Not only was my tailbone broken, it was in complete misalignment with my spine. I also had pelvic and muscle misalignments, two degenerated discs, and an extremely sore piriformis (the muscle underneath the glutes). I was a mess and in some sort of pain for 20 months. Now after four months of manual manipulations and hours of physical therapy in balancing and strengthening my core muscles, I am happy to say that I am about 80% back to normal. 20% is the weight gain and my ability to do the things I use to be able to do. I will most likely never completely recovered because of my degenerated disks, but the key is none of that tailbone pain has occurred after the first few adjustments.

Robin and all the therapists at Pacific Coast Physical Therapy are wonderful. Robin is very articulate in explaining the causes of the pain and it all makes practical mechanical and physical sense. Being a mechanical engineer, I fully understand the body mechanics and am extremely critical of people knowing what they are doing to my body. I hate pain and unnecessary medications or treatments.

Please keep up the hope and faith that there is relief. You can email me at crawfishlvr@yahoo.com if you have any questions.

Updated 2003-06-01




Coccyx bent to 90 degrees

Anonymous - bubbles_carnabid@hotmail.com

I am 25 years old. As far as I remember I have had this excruciating coccyx pain for the past 3 years. I always had a dull ache in that area but didn't think anything of it, until I started to work full-time where I had to sit for 8 hours. I have been in one major accident which could have ruined my coccyx, back when I was 8 years old, and when I was 15 I remember falling on the ice and my coccyx hurting for days. I have also been diagnosed with having a scoliosis, so I don't know if that is linked to my coccyx either.

So finally I decided to see a GP who sent me to a bone scan. The results came positive which said that there was small uptake of the trace around coccyx area (the radioactive pill which supposed to color hot areas) which could be causing inflammation.

That doctor had no clue of what to do, so he sent me to a rheumatologist thinking could be arthritis, of course to no avail. That doctor had no clue either but he sent me to get X-rays done. Less than two weeks later he called me, then I realized something was up. The results showed that my coccyx is bent to 90 degree forward, and to the side, maybe caused by my traumatic fall? It also said that they couldn't see any lesions but they suggest a CT scan if my bone scan showed anything abnormal too.

That doctor sent me to a physiatre who said of course that he doesn't have experience with my kind of thing and that I would need manipulation from an osteopath. I have been seeing an osteopath every 3 weeks for the past 10 months, a bit of relief but the pain is still there when I sit.

My pain usually is after sitting for a long time, I have been using the doughnut at work which is the only thing that seems to be working. I don't want to also be using it at restaurants or outings. If I don't have the doughnut I will keep on changing positions when I sit.

Finally the physiatre thought to get me to do the injections which I am against. God knows what could go wrong and from what I have heard it doesn't solve the problem. He is sending me now to get a CT scan done to make sure there is nothing more to it! My fear is the unknown or maybe the worst of what the results could show, but if the results already showed that its bent, what else do they need to find on the scan.

It seems like I have to live with this pain for life, also something else that scares me is childbirth, my gyno said its possible it breaks and that it will heal!

I hope my story was helpful! I would like it if anyone that has experience with coccyx that is bent, would email me their stories.

Updated 2003-06-08




All terrain vehicle accident

Anonymous

I have to say I can identify with these postings on this page. One month ago I was involved in an ATV [all terrain vehicle] accident while going up a very steep hill. The ATV and myself went backwards. I feel actually, although my tail bone was injured, I am very fortunate the injury wasn't higher up.

Now the predicament. I cant go from sitting to standing for any amount of time without terrible pain. I am a Registered Nurse, so most of my job is a lot of both. After a 12 hour shift, I have to literally lift myself out of my car. When I am off for a few days it seems to get better, but like most people I cant live the life of Riley, and not work.

After reading this page. I am glad I am not alone. Its just a type of injury I don't want to discuss to much with peers....:)

Updated 2003-06-15




I can't think of anything I have done to get this

Anonymous

I have been having trouble with the coccyx which I didn't even know existed! I'm 16 and I went to the doctors who said it was coccydynia, and he said I must have done something to the coccyx, but I can't think of anything, and if I have it didn't hurt at the time.

I recently had exams which was terrible sitting down for hours in pain and concentrating, but the thing that is more painful is when going to stand up. I have tablets now to take so cross fingers those will work, but I read other people's stories and I'm getting the picture it won't be any time soon!

I really do feel for you all with this condition it really is not nice.

Updated 2003-06-29




Coccyx pain after childbirth

Anonymous - a1cusmano@optonline.net

I gave birth to a 7lb 13 oz. baby girl in October. It was an induced labor. Ever since the then, I have had nothing but pain in my lower back (coccyx). I kept on trying to ignore it, but the pain just kept getting worse. I have been to several doctors and none of them are very helpful. I just get ridiculous advice from them. The scary thing is you can actually feel the coccyx sticking out! I am so afraid to give birth again.

If anyone ever saw the movie shallow hal, I wonder if I am going to have a wagging tail! Seriously, the pain is unbearable and some days I feel as if I can't even hold my daughter.

Please email me if you are in my situation, or you know someone who gave birth a second time with this problem.

If anyone knows a good doctor in Rockaway New Jersey or Parsippany please email me as well.

Updated 2003-07-13




Pain and a lump or swelling

Anonymous - wfsf062@earthlink.net

About 18 years ago I fell down a flight of stairs directly onto my tail bone and I'm sure I broke it. The pain was excruciating and I couldn't even walk for a little while.

Now 18 years later, I still am experiencing pain (have from time to time, but this is the worst). I also have a swollen area or a lump about the size of a 50 cent piece. Is it possible for this area to calcify and cause this much pain??

I can't sit or lay on my back without pain. A "donut" inflatable helps a little bit.

I'm ready to finally call a doctor. Do I go to an orthopedic or neurologist?? There are none listed on this web site in my area. I'm very concerned about the lump I feel.

Any comments would greatly be appreciated.

Updated 2003-08-03




Will the pain ever go away?!?!?

Anonymous - YoungFamily00@aol.com

Well, it's 1:50 am and I can't deal with the pain so I'm online and found this site.

I fractured my tail bone when I was 10 or 11 years old after being kicked on my upper left thigh by a horse while at riding camp. They rushed me to the hospital and said I had a fractured tail bone. I iced it and sat on one of those donut things. After I left camp I never saw anyone about it again.

That was 14 years ago and now it's back like a bad rash.

Does anyone know of some really good drugs to help with the pain? I'm a CSR so I'm sitting most of the day, then when I get off I have to play with a soon to be 3 year old. So any advice would be great.

Updated 2003-08-17




How to get treatment -- my story

Stubborn Patient

Jon - Thanks very much for starting and maintaining this Web site. It was instrumental in my getting treatment, and I want to tell other people how I used your site to do it.

I went to a couple of doctors before finding your Web site. They did all sorts of tests for bone cancer, prostate cancer, etc. Everything showed up negative (normal). One doctor told me the pain was in my head. I imagined myself right out of his office and went somewhere else.

After this I was really glad to find your site, because your description of symptoms was exactly what I felt. However, even after thoroughly reviewing your site and the medical papers, I had trouble finding a doctor who would take me seriously about my tailbone. None of them would believe that tailbones can move, for example.

Finally what I did was print out the following paper from Dr. Maigne, pictures, diagrams, and all: Management of Common Coccygodynia

I took this paper to a series of doctors and finally ended up at a doctor who specializes in pain management. I showed him the paper and convinced him to set up the sitting versus standing x-ray with a radiologist. This clearly showed that my tailbone was moving, exactly as Dr. Maigne's paper said. The doctor said that he would never have believed it without the x-rays.

The doctor agreed to try the injection treatment mentioned in the articles on your site. While watching under flouroscope, and under local anesthetic, he injected a combination of corticosteroid and lidocaine into the disk that was at the place where my tailbone was bending. Within a couple of days I had no more pain other than a bit of bruising from the needle.

I was pain-free for about 10 months. It's been a year now, and unfortunately the pain is returning. However, now I know that it can be treated, so I don't have the despair I had before finding your site. I'm planning to go back to the same doctor soon. He had told me that we could probably do two or three injections max, then would have to think about other strategies. But at least this means about 10 months at a time without pain, which anyone reading this will understand is priceless.

For those that still have trouble getting doctors to believe them, I have some ideas that could help. I can't take any responsibility or make any claims for their effectiveness outside my own situation, but they worked for me.

The first thing to do is print out Dr. Maigne's article and any other articles you think are supportive. Avoid printing out or mentioning anything discussing chiropractic, acupuncture, or other "non-traditional" treatments -- these will only give doctors further reason not to take you seriously.

Go straight to a pain management specialist and convince him/her to set up the sitting/standing comparison x-ray mentioned in the article. The x-ray has to be done carefully to make sure a comparison is possible, so bring copies of the Maigne article to the x-ray appointment and get the radiologist to agree to do the x-rays exactly as described in the paper. If they refuse or say it's not necessary, leave before they take any x-rays and go find another radiologist.

By the way, if your insurance makes you go to a "primary physician" first, do so but keep changing primary physicians until you find one who will prescribe the diagnostic x-ray, AND who agrees to refer you to a pain management doctor if the x-rays show that your tailbone is moving. Make sure he/she agrees to both actions before you do stay with that doctor.

No matter how many doctors tell you no, keep changing doctors until you get one that will listen and take the exact action you want. If you run out of doctors, get out the list of doctors from this web site and call some of the doctors in other states, asking them to tell you open-minded doctors in your area.

With any doctor you visit, be pushy, don't take no for an answer, and make sure to be well prepared with information, including the printed articles. Bring extra copies of the articles to leave with the doctor and tell them the URL for the www.coccyx.org web site. Doctors usually respond better to facts than to emotional pleas -- provide a lot of evidence and tell them that the x-ray diagnostic is needed to reach a conclusive diagnosis. Discuss the problem dispassionately and objectively. Try to get the doctor interested in learning about this "new" problem and working with you to resolve it. Tell them that they seem more open-minded than other doctors you've seen, and you're sure that they will want to get the x-rays to prove or disprove that your tailbone is moving.

Don't mention anything about treatment until the x-rays are done and a doctor has agreed that the tailbone is moving and could be the cause of the pain. If the doctor wants to discuss treatment, tell him/her that's probably not appropriate until the source of the problem is identified. Once the x-rays are done and the doctor agrees that the tailbone is moving, show articles about the two main treatments (injection and surgery) and ask for an injection. For myself, I intend to avoid surgery as long as possible, hopefully forever, but you should discuss both alternatives with the doctor to make your own decision.

I can't emphasize enough that you must be really pushy and persistent, especially if you are a woman. I find from experience with my wife that many doctors rarely take women seriously in general, and often tell them that their pain is imagined. Both male and female doctors do this. I had a doctor tell me that my pain was imagined, despite the fact that I'm a large, well-educated male with a forceful personality. If you are a woman or you have a gentler personality, this is even more likely. If it happens, give the doctor a strong but civil tongue-lashing, and leave. You'll find someone else eventually.

Above all, be firm in your resolve to manage your own situation and remove all obstacles. Nobody will do it for you. I wish you good luck.

Stubborn Patient

Updated 2003-08-31




Fell down the stairs a year and a half ago

Anonymous - Sela098@aol.com

I fell a year and a half ago down the stairs of the complex I live in. The landlord decided to paint the stairs with gloss paint and I fell down 4 right on my you know what. The stairs are concrete and I called the ambulance to take me away.

Went there and had my x-rays and they found nothing but a bruise. For the past 6 months I have been in agony. Sitting sideways, and when I lay down in bed to watch TV I am lucky if I can tolerate it for 5 minutes. My back and bottom is where all my pain is. Doesn't matter what I'm sitting on, it still hurts.

I have not tried anything for this since I didn't think anyone would believe me because the x-ray never showed that I broke it. I called my landlord a couple of days after I fell and told them that they needed to rubber the stairs so no-one else falls down. Well, it took him one more person to fall and break their ankle for him to do something about it. I wonder if I could sue him for this....I'm in pain all day long. I think I would have rather break my arm then fall on my bottom.

Updated 2003-10-05




Could my fall 35 years ago be the cause of my pain?

Anonymous - Juliakookieq@aol.com

For the past two months I have been having constant coccyx pain. At first I thought it was from sitting down a lot at the computer at home. My work requires some sitting, standing and walking. I took some Alive for the pain and at first it helped but now it just helps some but the pain never goes away. It hurts when I walk, cough, make sudden movement and must be careful how I get up from a chair and my right hip sometimes hurts, too.

I am now going to be 50 years in a couple of months, but when I was about 15 years old I fell down some stairs at school landed on my tailbone and broke it. It healed after several months, had some very light pain through the years, ignored it and went about my life. I can't ignore this pain this time. Could this be from my early age fall? Now the pain is to the point I have to take Alive regularly. I find this very odd but can't think of any other reason why I have constant pain and feeling of swelling.

I will be seeing my doctor this week and plan to mention my pain to him and see what he thinks and recommends.

Updated 2003-10-19




Losing weight made the coccyx more painful

Anonymous

Original posting, 2003-11-02:

I am a 30-year-old female. When I was 18, I broke my tailbone skiing (I landed on a tree stump right on the coccyx). It was incredibly painful, but my local emergency room said there was nothing to be done for it and sent me home.

I have lived with the pain for some time now. In the beginning it was quite bad, and then I adapted my life around it. I sat on one hip in movie theaters, shifted quite a bit during college classes, and then, once a professional, got up from my chair frequently to walk around and relieve the pressure.

About six months ago, due to the stress of being an attorney, I lost approximately twenty pounds (I was 5'6 and 128 pounds before that). I don't know if I re-injured the coccyx somehow or if it was a result of being more exposed, but my tailbone began hurting more than ever before. I now cannot lie flat on my back on a table or even in bed, but have to shift position or sleep on my side. Even simple things like going to the dentist, driving, getting a facial, etc. have become impossible. Add the Porsche Boxster as a car that is not good for a painful coccyx. Worst of all, the tailbone is clearly visible through my skin, and even through light weight pants. It has been so since my accident 12 years ago.

I saw an orthopedic surgeon, who gave me lidocaine/steroid injections twice over a period of three months. These injections did not help; in fact, they seemed to make the pain worse. After an MRI, I am contemplating taking the doctor's suggestion and having the coccyx removed, along with the S-4 and pieces of the S-5. The surgeon has warned me about the horrors of injury to the dural sac and the potential of permanent incontinence if anything went wrong. [Note from Jon Miles - among hundreds of coccygectomies reported in the medical literature, permanent incontinence is not reported as a result of the surgery in any cases.] He says that the coccyx is clearly bent at a strange angle, protruding and abnormally long.

I haven't scheduled the surgery yet -- trying to find a time this year (my deductible has been paid, so I'd like to get it done by the end of 2003) when I can afford to recover for three weeks. I am using surgeons at Cedars-Sinai Medical Center in Los Angeles.

Update, 2003-12-14:

After having months of no communication about my surgery from my chosen surgeon, I chose to see Dr. Covarrubias in Mission Viejo [note unfortunately as of June 2005, Dr Covarrubias has retired. See list of doctors and specialists in the USA]. Even though Dr. Covarrubias is over an hour away from my home in Los Angeles, I have scheduled my surgery with him on December 17, 2003. He listened to my questions and saw immediately what the problem was on my MRI. (I've attached the MRI report, which is kind of cool). It's interesting because Dr. Covarrubias does the coccygectomy as an outpatient procedure that takes one hour, while my previous surgeon told me the operation would take two hours and that he would keep me in the hospital for two days(?) I don't think my previous surgeon had done many, if any, coccygectomies. Apparently Dr. Covarrubias has performed 100+.

I hope to take lots of before and after photographs to help us all understand what to expect in terms of scarring, etc. I'm looking forward to some relief from the pain!

MRI SCAN OF SACRAL AND COCCYGEAL BONES - WITHOUT CONTRAST:

INDICATIONS: 30-year-old female with tail bone injury twelve years ago with persistent pain.

TECHNICAL DATA: This scan was performed on the GE 1.5 Tesla Horizon LX magnetic resonance scanner. The following signal acquisition sequences were obtained:

  1. Sagittal: T1
  2. Coronal: T1
  3. Coronal: STIR T2
  4. Axial: T1
  5. Axial: Spin density with fat suppression

FINDINGS: No areas of abnormal signal are seen involving the sacrum or bilateral sacroiliac joints. There is decreased signal on Tl and STIR images within the soft tissues posterior to the coccygeal bone with an area of very low signal on Tl and STIR images. This most likely represents calcification in this area. This is most consistent with an old injury and soft tissue fibrosis.

There is increased signal seen on axial STIR images within the coccygeal bone with anterior subluxation of the distal coccygeal area, with no discrete cortical fractures seen throughout the coccygeal vertebral bodies. No evidence of a presacral mass is seen.

IMPRESSION:

Edema seen involving the distal coccygeal area with anterior subluxation of the two last vertebral bodies of the coccygeal bone, with surrounding fibrosis. This is most consistent with an old injury with soft tissue fibrosis, with repeated microtrabecular injury of the distal coccygeal area. There is also possible soft tissue calcification vs. prior surgery in this area. Please correlate clinically. No evidence of a mass is seen.

Update, 2004-02-22:

The surgery, while no walk in the park, was not as painful as I anticipated. In fact, the most painful part of the surgery was waking up in the recovery room on my back on a stretcher. I'm not quite sure why they placed me lying on my back, but as soon as I was cognizant and could go home with my father, I went home on my stomach and felt pain-free. We stopped for chai latte and a muffin on the way home and I had no pain whatsoever. The nursing staff gave me lots of Demerol to stop my body from shaking (I'm always cold, post-surgery) and the anesthesiologist had directly injected pain block into the surgical site, so I really did not feel pain for days 1 and 2.

Day three was when the pain began, but again, it wasn't horrific. I controlled it with prescription Vicoprofen and didn't even take all that much.

It's now been almost two months since the surgery. I'm driving, working, sitting without pain, flying on airplanes, etc. Without the coccyx sticking out, I have no more pain. Dr. Covarrubias did an amazing job with the incision, and it looks like nothing was ever there. I am thrilled with the results of the surgery and wish that I had removed my coccyx years ago.[see list of doctors and specialists in the USA].

Before surgery:

image

After surgery:

after surgery

later

healed




Removal of pilonidal cyst

Anonymous

Original posting, 2003-11-09:

My pilonidal cyst started when I was at scout camp for summer. I was a counsellor. I fell over a bench. I had surgery on September 11 and a week later I didn't know but it all started all over again. Well the doctor that done the surgery told me I was fine. My parents took me for another opinion.

Well I'm 17 now, had the second surgery in July 2003 and now I'm on my third recurrence. I'm a little tired of it but I know I am dealing with this cyst. My doctor now is talking about doing muscle reconstruction.

Reply, 2003-11-23:

This E-mail is for the young man "Anonymous" who wrote about a pilonidal cyst on November 9th. My son came back from his freshman year at college with a pilonidal cyst. It scared us when we shaved his butt crack and found not only the infected cyst at the top of the crack...but a half dozen other "pin holes" along his crack. These non-infected pin holes sometimes has several un-rooted hair pieces sticking out of them. Never knew if hair came from inside or outside.

Well, to make a long story short, on the internet, we found a lady who told us how she treated her son (charged $3.00 ?????). We applied natural vitamin E to the butt and all holes healed in two weeks. The infected cyst took 14 months but is now healed. My son applies vitamin E three times a week to promote skin growth and trims his hair in his but crack and lower back with a mustache shaver. It's been two years now with no recurrence. Vitamin E is a miracle cure for pilonidal cysts.

See also Pilonidal cyst




Found a chair that helps

Anonymous

I was at my sons little league game and I sat down in one of those collapsible type camping chair. The ones for 20 bucks or less at K-mart etc... Coleman also makes them.

No pain. It was the first time since the pain began that I could sit down without pain. Seems to me, the chair supports you from the thighs and outside hips relieving pressure from the tailbone area. I use one at work. The problem is the chairs only last a few weeks or so before I have to repair or replace them.. They are not designed to be used the way I use them. I spend 40 hours or more a week sitting in them. I have 4 of them now. My job requires me to be seated all day long, I would have had to leave my job by now had I not discovered these chairs.

I suspect some of those lawn chairs that have bands running from arm to arm rather than back to front may have the same effect.

See also Comfortable chairs

camping chair

Updated 2003-11-09




There are excellent alternatives to surgery!

Anonymous

Original posting, 2003-07-19:

Hello fellow Coccyx sufferers!

I'm 26 years old and have been suffering from coccyx discomfort ever since I had a riding fall when I was 15 – yes, that's right, 11 years and no one has helped, until now! In fact, my coccyx hasn't caused me too much pain apart from not being able to sit for long periods of time, finding driving uncomfortable etc. My main problem, or so I thought, has been chronic pain in my lower back and shoulders. I've never consulted my GP, firstly because I thought the pain wasn't serious enough, and secondly because I'd prefer to give 'alternative therapies' a go. Sadly, although I've seen numerous osteopaths (immediately after my fall and intermittently since), chiropractors and physios and told them all that my back problem started with my riding fall there has been very little improvement. In fact, all my related back problems have got worse and seem to have been the result of poor posture in my bid to avoid contact with the coccyx - sitting crookedly being the worst.

It wasn't until I consulted a physio prior to starting a pilates course 3 weeks ago that I came nearer to understanding what was going on in and around my lumbar region. He told me that he was pretty sure that I had coccydynia and that my back pain was rooted to that problem – ah, well that makes sense! Well, I decided to investigate coccydynia and quickly found this website. Almost immediately I contacted Michael Durtnall, chiropractor (his details can be found in the list of specialists) after reading his message as well as Helen Buckthorp's on her recovery.

Following x-rays taken by Michael Durtnall, it transpires that I have a long coccyx (4 sections, I think) that has an over-pronounced inward curl and the top section (closest to the sacrum) has been knocked out of line. Michael has used ultra-sound and acupuncture to release the muscles that were in spasm around the dodgy section and gentle manipulation to move the coccyx back into place. I have been treated by Michael twice so far and am making an amazingly quick recovery: THERE ARE EXCELLENT ALTERNATIVES TO SURGERY!

On the conventional medicine –v- alternative therapy front: although my coccyx has caused me no end of problems I would be very reluctant to see it removed! Equally well, I don't see any point in having corticosteriod injections etc if the pain can be relieved by realigning the coccyx sections – I won't get relief from my back pain until my spine is in proper working order again! If there are any other people out there to whom the thought of surgery makes their stomach turn, then give alternative treatments a try.

Good luck!

Update, 2004-03-14:

I have received a number of emails, from people from all round the world, with enquiries about the progress of my chiropractic treatment with Michael Durtnall. So here's an up-date:

I have been seeing Michael Durtnall since the end of June last year when I was suffering serious discomfort from my coccyx, low back, neck and shoulders! I felt depressed and physically debilitated - although a normally fit and healthy 26 year-old I was close to having to use a stick, I couldn't play the sport I filled my life with and I could hardly sit in a cinema seat! Michael used manipulation on all the problem areas of my back (not pleasant re: the coccyx, but worth it!) as well as acupuncture, laser and massage. Up until Christmas I was seeing him every 1-2 weeks, and now that the problems are resolving I'm receiving treatment about once a month. I know that he's seeing quite a lot of coccyx sufferers at the moment (many due to his piece on the coccyx web-site I think), including a lady from the Netherlands who flies into London regularly.

I'm about 90% recovered (although this is difficult to measure as I've had back problems for over 11 years now!) - the coccyx pain has almost completely cleared up, and I only suffer from minor discomfort in the rest of my back as a result of lapses back into poor posture! I've combined my treatment with Michael with quite intensive pilates exercises which have been amazing - the two go very well together. I can't speak more highly of Michael's work - I'm now aware of how my body works, how hard I need to work it to keep it in good condition, and what's good and bad for it. I'm now back on my previous good form: horse riding a lot, cycling to and from work, playing tennis, skiing - you name it!

I hope this helps!




Thirteen year sufferer

Antonina Breen - Jamespbreen@aol.com

When I was 19 I fell onto my coccyx, hitting it quite hard on the wooden arm of a chair. At the time I barely noticed any pain but about 6 months later, not long after starting a sit down job, there was significant discomfort which I visited my GP about. On and off for the following 8 years I had pain from sitting down for even short periods of time, but all my GP did was prescribe pain killers and said that pain of the coccyx was very common and normally faded in time. (HAH)

I actually had a period of about 2 years with no noticeable pain, but then 5 years ago the pain came back with a vengeance, words can hardly describe the pain that I suffered, everytime I was sat down was like sitting on a hard rock and when I got up it was like someone had stuck a knife into my coccyx. My GP just kept changing my pain killers until eventually he referred me to the Nuffield Orthopaedic. Once I was referred I then endured the steroid injections, infra-red therapy, manipulation of the coccyx whilst under general anaesthetic, all this and still taking co - dyhdromol. None of this worked so I was put on the waiting list to have the coccyx removed. As is so typical, when I did get called for the operation the pain was in remission, but I was told that should the pain flare up again all I had to do was get referred again by my GP. Surely enough 1 year later and the pain is back again, and progressively getting worse, luckily I have already been put back on the waiting list but in the meantime I have to take pain killers that have no effect but I have to be seen to be trying.

The specialist that I saw recently tried to persuade me to not have this operation done and instead to take the pain killers when necessary. From the questions he asked me I could tell that he had not read my file or he wouldn't have suggested other options to having the op. I was told prior to having manipulation of my coccyx that it was out by 90 degrees, after manipulation the pain was no better. I'm no specialist but I believe that the pain is nerve and muscle based, removal of the coccyx would stop those nerves and muscles from being pulled on. I'm hoping that this operation will alleviate most of the pain, and discomfort, that even a simple bus journey, or watching the TV, would surely have aggravated.

Antonina Breen

Updated 2003-06-29




Tailbone removal

Ashley Loomis - flyeagle@sover.net

My problem happened about 3 years ago, while one of our grandchildren was visiting, she was playing and fooling around on the stairs that lead to the upstairs of our home, and I happened to say, I don't want you to keep doing that, because you might fall down them and get hurt, right at the moment I said that, my sock happened to catch the carpet and I slipped all the way down on my tailbone, only funny part was my granddaughter said to me, like that grandma? Like I was demonstrating to her.

Well it hurt for about 4 months to sit, then seemed better. But about 9 months later I found that every time I sat on a chair, driving, sitting on our bed, or the couch, my tailbone area hurt. Like I felt it had a black and blue on the tip. I suffered for a long time, fly on planes, it constantly bothered me. So 2 years ago while visiting my regular doctor I mentioned this to him, and he had me go in for a x-ray of the tailbone area. Nothing showed that it was broken. Well went through another 5-6 months and then my doctor referred me to a orthopedic doctor named Dr Lilly, here in Vermont. After seeing him he suggested that we try having a cortisone shot injected into the tailbone and see if that would help. After having that done, boy it hurt to sit for 2-3 days after, but then no pain. But after about 4-5 months the pain would return again. So about 2-3 times a year I would have these shots. This was going on 2 years. On the last shot we finally discussed having the tailbone removed and he explained that he had performed this a few other patients in our area and it would probably help.

I knew we were going to be going to our 2 week time share in Florida, we go in May, and in November, so before I would go the month before I would have the shot so I could swim, walk, sit on plane with out pain. I had my last shot in November 2002 and scheduled the surgery December 6th 2002, figuring with winter and lots of snow here in VT. would be a good time to have it done.

Surgery went well, came home same day, no pain well until the medication wore off, then it hurt!! Also the doctor mentioned that it was a good thing I had it removed because the tailbone was extremely loose and may have ended up breaking off inside my body at some point. X-rays would have not showed that. They did of course give me pain medication for 2 months to take. Different things occurred the first 2 weeks after surgery. Had staples removed on the 10th day. Before that my husband would have to change the bandage, and I would bleed a little through bandage, and nightgowns, so I started wearing to bed, those garments, that look like an adult diaper, but have 2 straps and just go from front to back. And I wore the thin kind of sanitary napkins on my underwear. The doctor said bleeding was normal, but to watch for any signs of infection, which there was none. Some of the side effects were because of the medication, could not go to the bathroom, for about 4-5 days, and took stool laxatives everyday, finally went and boy - at that time I thought I would rather be going through labor!

I had to sleep a lot, and my regular energy didn't return to about 4-5 weeks later.

I saw the doctor again at about 6 weeks recovery, and mentioned that I still couldn't sit longer then 15 min. and that my butt checks seemed to have these sharp pains through out the day or at night as well and would wake me up and then I couldn't sleep. He suggested physical therapy at the hospital. At first I said, well how is that going to help me sit on my butt? He said you'll see.

So 2 weeks ago I started physical therapy 2x a week for the first 2 weeks, and in Feb., it will be 2x a week for 1/2 hr. The woman is very good! The first time she hooked me up to this machine and to a computer, the area's were connected to the pelvis and tailbone area, and she had me do some things, like tightening my pelvic muscles, relaxing them...all kinds of different things, then she explained to me what I didn't know at all about after having this kind of an operation.

When the tailbone is removed, then the ligaments are cauterized and then joined together, because that is what controls the bladder and bowel area. So that the pain that she could see by the testing were muscle spasms, and that also in the pelvic area and scar tissue area were very taunt.

The 2nd visit she started showing me a few exercises to start to stretch that area, to do them 2 times a day. Each week she adds another part to the exercise, and also each time she uses a sonic machine that really feels great to me. It's the best part of going..I feel.

This week approaching my 8th week after surgery she had my husband come in and showed him gently how to massage and slowly with out much pressure to move the skin in the area of surgery. She also put on some strips of a kind of Band-Aid from Japan, in a star pattern that will stay on for a few days even when taking a shower, that will help to stretch the area of skin. And gave us extra when I need to change it.

I searched for a long time for a real good pillow to sit on, as I tried numerous ones, and wanted to find one that was jell filled.

I could go into something funny, around 4 weeks after surgery, my husband had to drive me everywhere, I could walk ok, but could not sit! In the car, we would put the passenger seat all the way down, I would lay down on my side, seat belt, and my head on a pillow. I made him take me to Walmart, because I had an idea. I asked the lady in the bra area for the jell filled bra's. Not for me to wear as a bra. but, my idea was that it had jell in them. I wanted a large size like 42 or bigger, but the only big one left that they had was a 38.and on sale for $5.00. So I took it and went over to the craft area and took a thin softer cushion, like the ones that people make decorative pillows with. I put it on the floor with the bra on top and sat on it, well that lady in that area look at me well like I was weird and I could see my husbands face a little red...but I took it home and dissected the bra took the gel filled pockets out and cut out the cushion, and inserted the gel pockets. It felt pretty good except that it was not big enough. A friend of mine suggested that I put a search on the net for the Roho pillows, which I found, and found one with the jell filled. I like it very much, it was $104.00.

My husband has had to drive me and I tried twice myself, I can do ok, for about 15-20 min. but then it gets to painful still. Walking around is no problem just the sitting still is. So I will continue to go to therapy, and also 3 times a day I use a moist heat microwave heating pad and place it on my behind when laying on the couch, or when going to bed. It seems to help and feels good.

I only take 1 pain pill before going to sleep, and take Advil 2x a day. I seem to be sleeping through the night better now. But I can see that it is going to take more time to heal, and I sure hope I am better by May as we fly to go to our timeshare.

Hope any of this information may help anyone else.

Ashley Loomis

Updated 2003-02-02




Rectal discomfort

J Barnard - JBarnard1TN@aol.com

I was diagnosed with coccydynia after having a haemorrhoid procedure done 6 months ago. My discomfort is mostly in the rectum, a soreness after bowel movements. I do have a little soreness in the tailbone area.

I am confused about it all because I don't have severe pain in the tail bone area. I sit on a donut because of discomfort to the rectum. I am taking neurontin and an anti-depressant. This is more of an aggravation than pain, I am going back to the doctor next week but would like to have name of someone who deals with coccydynia.

Thanks

Updated 2003-05-18




Coccyx cutout chairs

Bob Knetl - knetl@comcast.net

Original posting, 2003-01-19:

Anyone try one of the coccyx cutout chairs? I know this question has been asked previously, but I am unaware if anyone has posted that they tried one.

Bob

Reply from Pam B, 2003-02-23:

For those of you who must sit for many hours, I would highly recommend that you purchase a chair with the coccyx cut out. I bought one in early January and have been using it for 6 weeks now.  If I did not have this chair, I am sure that I would not have been able to return to work.

I had tried a cushion with a coccyx cut out, for which I spent about $50 USD, but this did not offer any back support.  Believe me, it was worth it to spend another $300 USD for the chair.  If your coccyx pain is severe like mine, it will not completely relieve your pain, but it does take a considerable amount of pressure off of your tailbone; so much that for me I found almost 75% pain relief with the chair alone.  I combine this with a TENS unit (transcutaneous electronic nerve stimulator device) therapy and find that sometimes I can be completely pain free for up to an hour at a time.

Pam B. - Pamela.Bishopp@oracle.com




Coccydynia resulting from unrelated surgical procedure

Bob Knetl - knetl@comcast.net

My physician, an osteopath and pain management specialist, Dr Gary Kaplan of Arlington, Virginia [see list of doctors and other specialists in the USA], has been treating me for coccydynia for the past few years. He uses both traditional and non-traditional treatments. You can review my other postings (Coccyx cutout chairs, Neurontin and Sarapin relieved pain) to get my story and treatments on this site.

Recently, I was doing my 'oh woe is me' speech to my wife about how long I had the ailment. She said she really thought it might be associated with an appendicitis operation I had for a few years ago, in that my symptoms occurred immediately following my recovery from it. She urged me to mention this to Dr Kaplan.

I mentioned this to Dr Kaplan and it was like a Eureka moment and his eyes widened got pretty excited. He said that sometimes when the nerves are cut during surgery and they heal, they will misfire and the pain can be referred to other parts of the body. Coincidentally, in addition to my coccydynia flare up, I also was suffering from tendonitis in my elbow, which I had for months and came out of nowhere and was not responding to conventional treatments. He said he would treat me with neural therapy, if my symptoms were borne out by a simple test. I have to say this is where it gets pretty weird. He had me lay on my back with one arm raised perpendicular to my body. He had me place my hand on my side away from appendicitis wound. He ask me to resist when he pushed on my arm, which I could easily do. Then he asked me to place my hand on the wound and try to resist his pushing---voila, I could not. I am an engineer and was pretty skeptical, so we tried several more times with the same results ­ away from the incision no problem; on the incision weakness. He brought a German neural therapy medical textbook (see below) into the room and followed the protocols outlined in it (it listed coccydynia thankfully). The book was several inches thick with pictures of injection points on a model on literally every part or orifice on her body. The treatment is simple. He injected my appendicitis incision (scar) with non-preserved lidocaine and also introduced some of the solution into my vein. The first time he also injected the tendon in my elbow and then two points on my backside closer to my hips (not the coccyx directly) where the textbook specified.

A day after my first injection the pain in my elbow vanished never to return. The coccyx took longer. I returned every three weeks for a total of 5-6 treatments. Each time he did the arm resistance test and injected my incision (which kept getting less noticeable) with the non-preserved lidocaine, as well as injecting a small quantity into my vein. The last time I saw him, I was able to resist equally on both arms and the treatment was terminated. The treatments are for the most part painless and only take a few minutes.

My coccyx pain has not been completely eliminated, but is significantly better. Before I was taking 2400 mg of neurontin a day. Now, I am down to 1200 mg a day and the discomfort is significantly less (1 out of scale of 1 to 10). My pain level before treatment was 3-4. Now, some days there is no pain at all. A secondary effect of this treatment was to make the appendix incision less noticeable ­ just a thin line now.

I hope this helps those whose flare-ups might have been as a result of surgery for something completely different.

Good luck

Bob

Title: Illustrated Atlas of the Techniques of Neural Therapy and Local Anesthetics

Author: Mathias Dosch (preface buy O Bergsmann)

ISBN 3-7760-0849-0

1st English Edition (translation of 4th revised and enlarged German) Karl F Haug Publishers, Heidelberg, Federal Republic of Germany 1985

Updated 2003-07-13




Coccydynia after gastric bypass surgery?

Caroline Martin - groups.yahoo.com/group/gastricbypass-postop

I run a group for those who've had gastric bypass surgery (weight loss surgery, aka WLS) and apparently pain in the tailbone area upon sitting for any extended length of time is a VERY common experience for MANY WLS patients. Some theorize that it is due to weight loss and the loss of "cushioning", although speaking from personal experience, this doesn't fit. I've lost a lot of weight before and never experienced this pain. It started only after my having WLS, and it also started when I was still VERY obese. Surely, I still had enough cushioning. LOL

Have you heard from anyone else who is experiencing this pain only after having WLS, and do you have any insight as to what may be occurring? Also, are there any immediate steps that can be taken to deal with the pain? I did ask my WLS surgeon about this and he said that it's possible that there may be a nerve in my lower back that may have been irritated by the surgery, but he has never seen any studies about this, and he's never heard it addressed by fellow WLS surgeons.

Any insight you might have would be GREATLY appreciated! And, likewise, please feel free to add Gastric Bypass Surgery as another possible precursor to having coccydynia.

Best regards,

Caroline Martin

Updated 2003-12-14




Coccyx doctor recommendation for Finland

Casper - casper_cg@hotmail.com

I fell down sitting on my tailbone in the summer of 2002. X-rays clearly show a hypermobile coccyx. The last 2 bits are bending inwards more than they should when I sit. I've had 3 cortisone injections now with fairly good results. Constant pain is gone, but sitting is still out of the question. So something more probably needs to be done to get me back to normal.

I'd like to recommend an excellent doctor for coccydynia here in Finland. I've been through 4 or 5 different doctors for the past 9 months, and now I know I've found the right one. His name is Jukka Pekka Kouri, and he can be reached in Helsinki in a place called Invalidisäätiö Orton.

You only need to mention that you have pain in the tailbone and he will immediately know what you are going through. There is absolutely no need to go through the standard long winding explanations.

He knows all the treatment options from physical therapy, manipulation, cortisone injections (with or without fluoroscopy), surgery, and new methods to inhibit pain in the nerves connected to the injured coccyx area.

Updated 2003-10-19




Make a tailbone cushion from kids' swimming noodles

Cheryl

I slipped on the stairs and injured my tailbone three days ago, and have been unable to sit without pain since then. Your website has been very helpful. I quickly realized that this injury may take some time to heal. In the meantime, my job requires hours of sitting, and driving is very difficult. Internet searches turned up lots of pillow options, but I wanted relief NOW, so I bought a pillow at a local medical supply store. It didn't work, possibly because I am quite overweight, and the pillow just flattened out. One website recommended an extra firm pillow for heavier people. Since I have to drive and sit every day, I didn't want to wait for a mail order. They say necessity is the mother of invention, so..... I started experimenting, and this is what I came up with:

swimming noodles

Using inexpensive children's foam swimming noodles, fashion a U-shaped cushion which fits you, your chair, and your car seat. Use a serrated bread knife to cut the noodles, it works very well. If the simple U works for you, use duct tape to hold the U shape. Wrap the tape around one end a couple times, then bring it across the bottom, then wrap around the other end. Put a piece of tape on top of the sticky part which is holding the U ends together. Another option you might try instead of taping to hold the U shape together -- diagonally slice the ends of the noodle to make them wedge-shaped. Then slide these wedged ends into the back of your car seat or office chair. This held very well in my car.

If you find that you would like the cushion to give you a little more of a forward tilt or lift (which seems to alleviate the pain better), cut another piece of noodle and place it straight across under the ends of the U shape. Use tape to wind around and attach at the ends. Then you may also use the bread knife to cut a curved indentation in the center of the straight end of the noodle if your tailbone is hitting this "cross-bar" noodle.

This is an inexpensive way to create custom cushions which fit your body and your needs. You might experiment and make different designs for different places (car, office, etc).

Updated 2003-07-19




No pain when sitting, very painful going from standing to sitting

CJ - CJjernigan@aol.com

I am 29 years old and admittedly a bit of a hypochondriac. I have had some back problems in the past mostly related to lifting weights improperly (torn trap/rhomboid).

However, last night I woke up at 3 am noticing severe pain in my tail bone region and as my day got going, it only got worse. Going from a sitting to a standing position is very painful and for a brief (very brief and distant!!) moment I picture myself losing control of my bodily functions. That's quite fun when you are an orthodontist seeing patients all day long - stand up, sit down, stand up, sit down. I have absolutely no pain in my tail bone area when finally seated. I have dabbled in the past with what I thought was sciatica - I had some of that "down the left leg tingling" before.

Someone please make me feel that I am going to be OK, because I just finished graduate school and I am starting an orthodontic practice of my own and my back (and hands) is my livelihood. I am 5' 9'' and 165 pounds, and what I consider great shape, but I fear that I have just begun a saga of problems. Does anyone out there have any ideas?

Thanks

CJ

Note from Jon Miles:

Getting pain when moving from sitting to standing, but no pain when sitting, sounds like gluteus maximus syndrome - see the Muscle spasm or tightness page. But you should see a doctor to get a proper diagnosis.

Updated 2003-02-09




I feel like I have given up on ever getting better

CMA - tasi@fdn.com

I have been looking at your site for a while now and decided to add my experience. Back in August of 1999 I went to the gym one day to work out and the next day I could hardly sit down. I waited for a few months for the pain to go away but it never did.

First I went to chiropractor who took x-rays and told me that I had a bruised tail-bone. I had a few adjustments, but it still hurt. Then I went the ER and had more x-rays done, again I was told I had a bruised tail-bone and was given a prescription for pain. It did no good so I went for follow treatment to a GP who told me I needed to have an MRI. So after having that done, I was told by the orthopedic surgeon that I had coccyxitis. He said that was his term for people with imagined tailbone pain. By this time I was fed up with doctors. I went to another chiropractor who again took x-rays and he noticed that my tailbone was bent and severely dislocated. He gave me a few treatments and determined that I needed internal coccyx treatment. So after much searching I found a doctor that was willing to do it. I was pregnant at the time and I had treatments 3 times a week until I had the baby. After that my insurance expired and I could no longer afford to go.

So here I sit (in pain) four years later with no resolution. I usually have to sit on my side. I tried a donut pillow but it did no good. Basically I feel like I have given up on ever getting better. I have thought about getting the cortisone shot, but without insurance it's not going to be easy. I live in the Palm Beach, Florida area. If anyone out there knows of a good doctor anywhere on the Gold or Treasure coast please let me know. I'd love to one day be able to sit through an entire movie without switching from sitting on one hip to the other. Maybe… someday.

CMA, Florida

Updated 2003-08-24




Cortisone injection seems to be helping

Colin - colinthom@shaw.ca

Original posting, 2003-02-16:

I'm a 42 year old male. I'm fit, and not overweight. I developed coccydynia in the middle of 2002. It came on relatively suddenly, though I could not trace its origin to any particular trauma. Oddly, I noticed the pain when dismounting my mountain bike, not when I was actually riding it. Getting off the bike, and standing up straight thereafter, really hurt. I did have some pain when sitting, but I think the pain from biking came first, emphasis on "I think". All this said, I do recall 2 instances of trauma, but they were both many years ago, which may or may not mean anything. I stopped riding my bike 4 months ago, not being able to think of anything else to stop doing. I use a fairly wide saddle, that is padded, and has a recess at the back-end to make life for the tailbone easier.

I consulted my GP, and subsequently had an ultrasound to look for a pilinoidal cyst, which turned up negative. I had dynamic and static X-rays, which my doctor prescribed after I directed him to your website. I also had a bone scan. Nothing. The dynamic X-rays indicated a flexion of 13 degrees. This is within what is called a normal range in the documentation on your site. So, no real news here. Too bad.

In early January, I started a 3-week program of oral anti-inflammatories, and they were working. 2 weeks into this treatment, I spent 4 hours one day doing trail work in the mountain bike park. This consisted of trail clearing and lots of bending and standing, but no trauma or sitting down. That night, and the following day, my tailbone felt like it did 4 months ago - really bad! The balance of one week of anti-inflammatories did nothing to alleviate the pain. The good news is that they had helped a bit, so there was hope.

This took us to a cortisone injection, which I had 2 days ago. My initial reaction to this is that it has had a noticeable effect. I didn't do my usual morning sit-ups and push-ups yesterday, the day after the injection, but did do them today. I do sit ups on my back, with my calves on a bed, and my thighs perpendicular to the floor. I do crunches really and not sit ups. I feel no pain in my coccyx area when I do these, and am confident that I'm not bending my coccyx in the process. My hunch is that the push-ups, and their attendant flexing of my butt muscles, are the problem. That said, I feel a bit worse today, than I did yesterday. So, I'll lay off the morning exercises for a few days to give the cortisone a chance "soak in". Off the cuff, I'd say that I'm 40% better, already. I see my GP in another 2 weeks, and will ask for another shot of cortisone.

Update, 2003-04-06:

The cortisone injection I had in February made a huge improvement. I'd say my pain went from an 8 to a 3 in about 3 weeks. I had a second injection 2 days ago, and am hopeful it has the same impact as the first. I'm feeling worse today than I did immediately before the injection, but this is normal.

Update, 2003-08-03:

I had my 4th cortisone injection on July 11, after the 3rd which was in May. I had the 3rd in a slightly different location, since another area of pain seemed to have been uncovered by the first 2 injections. The first location hurt more than the "new location" so I think that the first 2 injections while taking care of the first location, allowed the "new location" to be revealed. The initial location is now pain free, and the "new location" which was treated for the first time with the 3rd injection has improved substantially. Overall, I'd say I'm 85% improved over where I was before I started all this back in January. It's a bit soon to tell since the most recent injection was only 8 days ago, but if the 4th injection is as effective as the first 3, which I think it will be, I hope to be more or less recovered in another month or two.

A comment for those considering Cortisone: It can take a couple of weeks before you start to feel the effects of the injection, and up to 4-6 weeks before you feel the full effects of the injections. You'll likely need a few injections, typically 8 weeks apart. It's a treatment regimen that can take several months, and it's been known to not work for some people. But hey . . . what do you have to lose?

Update, 2003-10-19:

Well, bad news troops. I had my fourth cortisone injection in July. The first 3, every 2-3 months starting in January, resulted in progressive improvement. I was about 85% better when I went in for the 4th, thinking that would be the end of it. Sadly, the 4th made things worse, and I'm back to where I started. Big Bummer.

I had a neural or medical acupuncture treatment, which involves an injection of freezing (Lidocaine 1%) into the acupuncture points, but results (none) indicate that further treatments will not help me. This is too bad, because I've responded very well to acupuncture treatments for other ailments. So, the last un-turned stone is Prolotherapy, about which I have my doubts and then I guess surgery to remove the thing needs to be considered. Groan. My doc's making an appointment for me with the Prolotherapy doc, and I'll find out whether this guy's had success treating coccydinia before. I'll keep you posted. It's now been a year since I rode my bike!!

Update, 2004-01-18:

Well . . .you may remember that my 3 cortisone shots worked like a charm . . . and the 4th blew me out of the water. The 4th was in July of 2003. I went to see a prolotherapist about 6 weeks ago. I was encouraged by the fact that this guy was a well accredited orthopedic surgeon, and not some fringe medicine freak.

After a VERY thorough examination, including INTERNAL manipulation of my tailbone, he gave me a cortisone injection. I did not exhibit symptoms of weakened or damaged ligaments that he usually sees, and since cortisone worked before, he thought it worth trying again. It really made a difference. I was 70% better after about a month.

I saw him again last week, and had a prolotherapy injection, the thinking being that cortisone's benefit is often temporary, and the prolotherapy would only serve to help the ligaments. I've had continued improvement, to the point where I'd say I'm 80% better. This is monumental news, given that I've been living with this for 18 months now.

I see the guy again next week for either a booster, or to tell him that I'm better and don't need another shot....I'll keep you posted.

Kind Regards, Colin Thom




Success with surgery

Dina

Original posting, 2003-03-02:

I had troubles with my back for a very, very long time. I remember falling onto the piece of furniture about 17 years ago, hitting a corner of the cabinet with my tailbone. I didn't go to the doctor (being 15 years old and hiding it from my parents), and walked it off in a few weeks. Since then there was a very mild pain every once in a while, aggravated by slips and falls, which I had by hundreds. In 1995 the pain got severe, my physician at the time did an X-ray but nothing was found. I'd been given Lodaine XL and it took a very little edge of the pain. It descended with time, but was constantly present on the background. I took a big fall of the mountain bike in the fall of 2001 and got pregnant at the same time! I started feeling persistent severe pain which I blamed first on the fall and then on the pregnancy - and postponed going to the doctors thinking that I didn't want X-rays taken while I'm pregnant and speculating that the pain will go away after I deliver. The pain became excruciating into the 3rd month, and I could not sit for more than 40 seconds unless I leaned 45 degrees forward. Luckily I got one of those "boppy" pillows that are designed to go around your waist to support the baby's weight during breastfeeding from a family member (as a baby shower gift), which I have successfully transferred under my bottom and that thing got me through my pregnancy. The last couple of months of pregnancy were a terrible horror, I couldn't sleep, sit, and even stand or walk without pain. I was constantly exhausted. I was still hoping for a natural birth, but my labor did not go too smooth and the doctor decided to go for a C-section, which was a blessing in disguise. There was no way that I could've pass the baby without further serious damage to my lower back. Anyway, to make a long story short - my beautiful healthy son was born, and my old and true boppy pillow nursed me through the next couple of months.

My physician prescribed me some Celebrex to see if it would help (no X-rays). Celebrex did not work too well (though it gave some effect) and she switched me to Vioxx. It helped a bit more, but was not the answer. I should've insisted on the X-ray! But I am a chicken when it comes to people in the uniform (white gowns included). So I went along with the medication. To my disappointment, the pain did not go away, and as getting worse, - not as sharp as without the meds, much duller, but still persistent and strong. I still could not sit, which was a major problem since I had to feed my baby. Try to stand all the time! I decided to hit the internet and found this website (THANK YOU, JON!). After reading all the stories I've decided to do something about it. So I took the providers directory from my health insurance company, and started to call all the doctors' offices in the 100 miles radius. After calling almost each of the sports injury and osteo specialist, I finally found Dr.Kane ( see Doctors and specialists in the USA, New Jersey), who had performed a lot of cortisone shots and some surgeries during his years of practice. I went to see him in summer of 2002 and he did the evaluation and took some X-rays. And the verdict was... my coccyx was broken! We couldn't pinpoint it to any specific event, since I had a lot of slips, falls, accidents, a pregnancy, etc. and one of them or all of them contributed to the breaking or my tailbone. Dr.Kane explained to me, that most of the times cracked or even broken coccyx does not require surgery and may be treated by other methods. However, since mine was significantly disengaged from the rest of my spine, and pointing sideways and even a bit backwards (if I remember things clearly), he suggested removing the broken piece. I agreed and we scheduled a surgery for a later date ( I had to postpone due to other health reasons).  

I've completed pre-admittance tests few days prior to the surgery, and I've checked in the Hackensack University Hospital in New Jersey at 7 am on October 29, 2002. I've spent 5 minutes in the waiting area, then 30 min. in pre-admittance, and then walked into the surgery room (I was given a choice to be wheeled in or to walk on my own). Then I got hooked onto the IV line, and one-two-three-fou...... there we go, la-la land! About an our later I woke up being all done. They wheeled me out into the post-admittance (or whatever they call the area). The only problem from the surgery was being a bit nauseous after the IV, but I've been given some meds for that and I could manage. An hour later Dr.Kane checked on me and told me that he removed 3 pieces of my tailbone and that everything went fine. Another  hour later I went home SITTING in the car - I was home by noon! I felt relief immediately after the surgery, though, I was pretty miserable the first week. Then the pain got a bit worse, but the scar was healing nicely and I knew I should give it some time. After all, my doctor promised me I would ride a bike two months after the surgery. I was given the Percocet for the pain. It did a wonderful job for pain, but wasn't agreeing much with the rest of my body, so when I thought I could manage without the Percocet, I went off 5 days after the surgery . On the same day  I took my car and went out to the pharmacy. I had to pull out and rest once on my way there. I drive Jeep Cherokee Sport, and in my opinion it is the most comfortable car for the coccyx conditions (with the back of the sit all the way up). I couldn't sit in anyone else's car at all, unless I was half-laying on the side, and even that caused a lot of main, but not in my car, so I'm very grateful for that! It took me about 2 weeks before I could sit for 15 minutes on the row. 4 weeks later I went to work - I had to get up every 20 minutes to half-hour to walk around and get the blood flowing and ease the healing pains. Two months after the surgery I COULD ride the bike.

It's been almost 4 months know and I bless the day I've decided to act, found this website, found Dr.Kane and went for it! The pain is still with me, but I only feel about 10-15% of what I used to feel, and I still feel that it is improving, so there is a chance for  a 100% happy ending.

Right now I am doing the rehab for the lower back (I also have some minor issues with lower back), and felt strong enough for a real exercise. I went to the sports club today on a guest pass. I've survived 30 minutes on the treadmill, went through 30 minutes of my back routine and some free weights (lightly). I feel a bit sore but great! I'm signing up for the sports club tomorrow! I have to take a lot of extra weight off now (it kept piling up while I wasn't feeling well, and that along made me feel worse, too). I feel that I am almost in control of my body, definitely being on the road to a full recovery.

I wish all of you good health and a lot of support from your friends and family. Again, thanks to Jon, Dr.Kane, all of you whose stories inspired me to change my life.

Update, 2004-01-11:

Hello again, everyone!

It's been 15 months since my surgery and 10 months since my last update. I've been getting a lot of emails and thought I owe it to everyone, myself and my doctor to write an update on my condition. .I am almost fully -98% - recovered. I know sometimes pain comes back, but I'll keep my eyes open and if it is in my charts to face it again, I'll face it prepared this time.

Sometimes I still feel pain, but it only happens when I have unnatural positioning of the body (for example, there is an exercise in Pilates program, when you have to "curb" your body into a ball and "balance" on your bottom, i.e. tailbone area - then it hurts) or when I sit on the couch all cuddly-up with my feet up on the couch and sideways for longer then 30 minutes on the row, or if I just plain sit for more then 4 hours. However, as soon as I change position, pain goes away. I shouldn't be taking unnatural positions and playing couch potato, anyway!

I have a relatively small (about 1.5 inches/3-4 centimeters) keloid scar, almost invisible if I stand upright. [Note - a keloid is an overgrowth of dense fibrous tissue that usually develops after healing of a skin injury]. Most of my big scars are, just my body's response. It was itchy in the first 6-8 months, but it's totally fine now.

Sometimes I still believe I feel a little something "cracking" down there when I do Kegel exercises, or contract my gluteus maximus while sitting, but it doesn't hurt. If it will get worse with time, I'll address it, but it doesn't bother me now. And, perhaps, it's just in my head.

So, considering those minor - especially comparing to horrendous past - issues, I can say I am 98% recovered. Almost completely! I was feeling this way about 6-8 months post-surgery, and it's been pretty stable since, so I don't expect it to be 100% at this point - but, believe, me, I'll do the surgery all over again. I think 98% is pretty darn good! I can do all the activities I want (except those two I mentioned above). I spend my workdays in the chair (just get up and move every couple of hours to boost circulation), and feel OK, and I can do all the active things I want: swim, ride bicycle, exercise, play with my son, etc. etc. etc.

Thanks, everyone, for your interest and, most important, your support, thanks to Dr. Kane, and personal thanks to Jon for starting this journey and sharing it with us. May you all be blessed with good health.

Dina.

Update, 2007-03-04:

Hello, everybody! It's been a long time since my surgery, and I feel great. I have been receiving lots of emails, so I guess it is time for another update.

It's been over 4 years since my surgery, and my coccyx (or what's left of it) has been 100% pain-free for a few years now. If I had to, I would do it again. If anyone needs a good doc in USA, New Jersey - I highly recommend my doctor - Dr. Kane (again, his name is on the list). I've been in contact with some people who also went to Dr. Kane, and everyone I know has been happy with his expertise and service.

I also wanted to share, at the request of my friend, Olga, who became Dr. Kane's patient, as well. See Olga's story here.)

That's all, folks!

Kind regards, best wishes, be healthy and happy!

Dina.




Anal spasms and tail bone pain

Debbie from Virginia - Cruizinkay@aol.com

Original posting, 2003-03-16:

I have suffered pain in the tailbone as most on your site describe. I made an appointment with my HMO provider. I am skeptical as to what will be the outcome of my appointment.

My father died of colon cancer as did his father, I do have my colonoscopy as I should. It is time for it again as well. Which is part of my reason to go to get this checked out. What I wish to ask is, I have suffered this pain for some years. I can also get awaken in the middle of the night from a dead sleep and get an anal spasm so painful as it will cause me to cry. I take an Ibuprofen and wait it out till it stops contracting.

I would like to know if this has happened to anyone else in your experience on this message board. I have called it to the attention to the doctor and they said after the last colonoscopy that they didn't see a cause for this pain there. It has remained a mystery. I do get the spasm every so often to the point of being scared if I feel it coming on because of it's intenseness. The pain lasts as long as if it is like a contraction having a baby as it builds up in intensity and then lessens after a few minutes or so.

I am sorry for such a long description. I just find comfort in knowing that I am not alone in suffering intense tailbone pain. Would appreciate anyone who would like to reply.

Thanks, Debbie

Update, 2003-04-20:

I went today for the referral I got from my HMO provider. What happened? ... absolutely nothing.

The doctor was at a loss as to why he was given my referral. He said they have nothing to do with tailbone problems. He said he also cannot tell me anything about the anal spasms. He told me to go back to my provider. the only thing he offered me was information on using a doughnut pillow and a referral to see a chronic pain specialist.

No help there. I paid a deductable for someone to see my behind only to say, he is not who to see for that or any other pain in that area I might have.

I guess it is back to the drawing board. I cannot imagine why it seems that these doctors haven't got a clue??? what is with that?

I had to give my HMO provider all the information I got off your web site. They did not hear of Proctalgia fugax or Levator Ani or any of the other problems in the coccyx area.

I will have to see my provider again and try something else. I have an appointment tomorrow to see the provider again. I will update again when I can actually get somewhere.

Debbie




Old tailbone trauma causing problems

Deborah - bonds5957@charter.net

I'm hoping someone can give me advice from their experience; as I have a problem since I have coccyx pain and am a dressage rider (form of English horseback riding).

I have nothing like most of the posters in this forum; I can function well doing most everyday tasks and I only suffer acute pain after I ride or sit on my tailbone. I really feel for people with more serious injury as this REALLY hurts!

I'm not sure when this pain started but I've always thought it to be related to a fall (off a horse) more than 15 years ago. I have only been to my family physician for this so far and he has referred me to an orthopedist. I'm not sure whether to go as it will be expensive and I do not want to make it worse.

My tailbone hurts intensely within an hour of riding with what's known as a 'deep seat' in dressage. It doesn't hurt while riding, unless I rode recently and it is still sore, but the pain lasts for days each time. It hurts not while sitting, but when standing up. I am 'getting back into serious riding' (meaning training and competition) after a hiatus of about 10 years.

I'm specifically interested in saddle covers that would help if anyone has specific knowledge. I know my problem is small compared to most, but it is still troubling to me. If anyone can help it would be really appreciated.

-Southern dressage rider

Note from Jon Miles - see saddle pad for horse riding

Updated 2003-11-02




Tailbone pain after bone from hip removed

Dee - artandeeaz@msn.com

I had major jaw surgery in April of 1994, during which they removed bone from my left hip to place in my jaw. After this I had some physical therapy because my left leg was hurting. One of the exercises was pelvic tilts. I soon noticed pain in my tailbone. I told my therapist but he say much about it.

My pain has continued to get worse. I have been from doctor to doctor, therapist to therapist, acupuncture, chiropractors, those using manipulation, activators, and specific chiropractic which involved only neck manipulation to make sure the brain stem was not being restricted. I have received no treatment since then (summer of 2002).

I have had this pain soon ten years. Now, I also have pain in the buttocks, down the right leg, numbness, burning, stabbing and various types of pain. I also have some numbness in my feet and I my toes tend to curl. I had none of these problems prior to 1994. I have used a cushion with a V . This helps protect my tailbone but I still have a lot of pain. It hurts worse to sit on a soft surface than on a hard surface. However, now the hard surface hurts too. I used to ride bike, hike and walk a lot. Now, when I walk, I get pain in the right leg even more and also pain the my lower back. This also happens when I sit too long .

I was originally diagnosed with "pelvic floor tension myalgia" and given deep heat treatments. This was done at the Mayo Clinic in MN. This gave me no relief. I was told not to sit for more than 20 minutes at a time. Sure, how can a person do that? I have difficulty standing, sitting and lying on my right side. The only time I'm free from pain is when I'm asleep.

I had four injections. The first two were before I got so bad, the second two were after I had gone through a rigid session of therapy, traction and finally the injections. None of them helped, I noticed no difference at all.

I've also been told I have an angulated tailbone, plus a few disc problems. Then am told that surgery was not a good option. Only a 10% chance of success! Help!

Dee

Updated 2003-02-16




Fractured coccyx during childbirth

Denise

Original posting, 2003-04-27:

Help!!! I broke my coccyx 2 years ago when I gave birth to my daughter. I had an induced labor that was 9 hours, pushed for 1 ½ hours and delivered a 6 lb. 7 oz. baby. I remember pushing for a long while with no progress and started to be concerned but was told that the baby just needed to come around the bend. I am assuming the "bend" was my tailbone, after my epidural wore off I could not move from the pain. It felt as though it was completely broken off with a sledge hammer. It popped/cracked every time I put pressure on it for 4 weeks. I couldn't lie in bed on my back or side, and would lie on my stomach. I had to get out of bed in 3 stages, have someone pull me to a sit while I held my bottom off the bed with my hands, breathe in agony, have someone pull me to a stand, breathe in agony, than walk. Couldn't stand up straight for 2 weeks, crawled up the stairs for the first 5 days I was home. Couldn't rock my baby for 3 months and had to nurse lying down for 3 months. I also wasn't able to sit comfortably in a car for 14 months but the pain did go away except for extended car rides. Didn't get x-rayed until 4 weeks after delivery and the results were inconclusive.

Now I am pregnant again and at 4 ½ months am starting to experience pain while sitting on soft surfaces and in the car. This has me very nervous about delivering again.

HAS ANYBODY BROKEN THEIR COCCYX TWICE DURING DELIVERY? Will I have to go through the same pain again? I am trying to decide whether or not to have a c-section this time or to deliver vaginally. Please e-mail me with any information you may have! Thanks so much for your time and information.

Update, 2004-04-04

Hello everybody, just wanted to post and update of my outcome with my second pregnancy and delivery. I had seen an orthopedic doctor specializing in back problems and he was thinking that I actually dislocated my tailbone. My tailbone started to get increasingly more sore throughout my pregnancy and I didn't want to chance a repeat injury so I elected for a c-section. I am definitely happy with that decision.

I switched to a new OB and he was wonderful. My c-section recovery was a walk in the park compared to what I went through with my first delivery. I had my surgery around 10:00 a.m. and was able to get out of bed early that evening. I had spinal anesthesia for the surgery and they used a medication called astro-morph (sp?) It is a long acting morphine that actually worked for over 24 hours and definitely got me over the most uncomfortable part of my recovery. That medication was so great that I didn't feel any afterpains for the first couple of days after surgery.

I was really able to enjoy my newborn baby, rock him, hold him, breastfeed, etc. and have my toddler jump right up on the bed with me the day after surgery. All in all I didn't shed a single tear over the recovery from the surgery.

My coccyx immediately started to feel better and by the time I went home I was able to sit in the car much easier than while pregnant. My coccyx is about 95% better now, I experience some soreness if I sit in the car for more than an hour or in a hard chair for long periods of time.

I hope all you have similar outcomes no matter what you choose to do with your next pregnancy and delivery!!!




Wanted to share it at last

Donna Gibson - DonnaDonnaGibson@aol.com

I have had coccyx problems for over 10 years now. I've had the usual injections, they lasted about 1 month. It seemed to ease up after I had my son. Then I had a fall and it all started up again. I have been on different drugs now for many years, which worries me a lot.

It's a Catch-22 situation, when in pain, you take painkillers, which always have side effects.

I feel sometimes people around me do not really understand how much this pain hurts.

I cannot drive because of it, yet the success rate, I have been told, is not that great.

The thought of anyone operating on my spine makes me feel sick and scared.

Yet I live with this pain everyday. Catch-22.

My doctor has just resorted himself, and myself, to a lifetime of painkillers and other drugs which relax muscles, which again have side effects.

I have read some of the success stories, yet I am still unsure.

I live in England, and would be grateful to anyone with reference and advice.

Good luck, to all others.

Donna.

Updated 2003-01-05




I've fallen and I can't get up!

Donna - dquerio@hotmail.com

Original posting, 2003-08-03:

Hi everyone out there in chronic coccyx pain. I'm 45 years old and my name is Donna. On July 14, 2002, I gave my dog an ice cube. It melted on my kitchen floor. I slipped in the puddle and I fell HARD! It was just like a cartoon . . . legs flying up in the air, and down I went on my tailbone. I layed there for quite some time, unable to move, crying like no get out. My 17 year old daughter came down on the floor to comfort me, feeling completely helpless as I know I was.

The next morning, I tearfully called off work, then called my doctor, who, having not seen me in a long time told me I had to come into his office before he would send me in for an x-ray. My daughter had to dress me, because I couldn't bend at all. My sister picked me up in her van and had me lay down in the back on the floor. God, that was one long, painful trip. It took forever to get in and out of her van, and then to walk into the doctor's office. I couldn't sit at all, and moving was excruciating to put it mildly. He examined me while I stood there in his office, prescribed darvocet and sent me for an x-ray. The x-ray showed nothing abnormal. I missed a whole week of work and did absolutely nothing but lay around and cry.

Going back to work was the most difficult ordeal I've ever experienced. I manage two apartment complexes which requires the ability to manuever the sites on foot, climb stairs, etc. I've struggled all this time, while progressively hurting every waking moment. I can't sit, stand, walk, lift, push, or pull. All my muscle tone is gone. I've been steadily losing weight, as I have no appetite now. In one of my offices, I took a body pillow, put all my equipment on the floor, layed on the floor on my side with pillows between my knees, and tried to conduct business like that. Some of my tenants have come into that office and cried, and so did I. After work, all I do is rush home to lay on the couch.

Six months after my injury, I was feeling extremely depressed with the chronic pain. I called my doctor again, went to see him, and he scheduled an MRI and a visit to an orthopedic surgeon. The MRI showed one herniated disc and two bulging discs, but nothing with the coccyx. I was set up for 3 epidural sessions (injections in the spine), but they made me sick, so I only did 2. Next step was the orthopedic surgeon who gave me a shot of cortizone in the tailbone and told me he'd see me in a month. That did me no good at all. When I returned to see him, he wanted to give me another, but I refused. He referred me to a pain management doctor who said take my injection or I can't help you. I took the injection, and of course it didn't help and I didn't go back there. I then tried physical therapy, and that increased the pain.

I go back to my primary care physician, and he orders a bone scan and a second opinion with a new orthopedic surgeon, plus prescriptions of vicadin, flexil, and celebrex and duragesic patches.

This surgeon examines me, and is very aware of how immobile I've become. He orders a CAT scan. Shortly after, I see a third orthopedic surgeon who shows great compassion and has a shining reputation in the country. His name is Robert Piston, and he's wonderful. He checked my CAT scan, and tells me the coccyx was fractured when I fell and has healed incorrectly, poking my organs. I am now waiting for a call from a neurosurgeon to remove the coccyx. I can't tell you how much I want this thing out of my body ASAP. I'll keep you posted. Lots of luck to all of us that need to see the light at the end of the tunnel.

Update, 2003-09-07:

On July 30, 2003, I went to a neurosurgeon 45 minutes from home. He agreed to remove the coccyx and scheduled it for August 5th. I was delighted! I fasted for 12 hours and arrived at the hospital in Youngstown, Ohio at 5:00am for the procedure. I was prepped, IV in my hand, ready to go for it. Fifteen minutes before the scheduled surgery, the surgeon came in and said he and his partner had discussed my situation the night before, and decided it was too hasty on their part to perform the surgery. I was MAD as could be!!!! He said that while I was there, they could do a nerve block instead. I went ahead with the block, and now have even worse pain then before. I can't sit at all now. He really used me, and messed me up physically. As it turned out, he knew the night before that my insurance claim was denied because he's outside my network. That was so unethical of him to keep that information from me.

I'm scheduled to see a 5th surgeon on September 5th at the University of Pittsburgh. I'm going by ambulance since I can't sit for the one and a half hour trip to his office.

Pray for me, please.




Tailbone pain cured!!!

Dorcas

I had chronic tailbone pain for 3 years - it completely ruled my life - no long car rides, no long movies, etc. I had cortisone shots 3 times a year in the tailbone - which saved my sanity. It would be good for about a month or so after each shot. There are doctors that will do this for you. Don't go to any that want to do it under fluoroscopy etc, because it's no better and much much more expensive.

I did find relief in an unusual cure - I started taking Glucosamine/Chondroitin tablets (500 mg. of each in each pill) 3 times a day with food FAITHFULLY. After about 4-5 weeks of this medicine, my tailbone was getting better. I have been shot free for 2 ½ years now and only minimal irritation every once in a while if I sit too long at the computer. Apparently, this medicine works as a joint healer which I guess the tailbone is. My pain was severe each time I went from a sitting to standing position. It got so bad that I was becoming depressed. The shots would help with a bit of relief, but thank GOD I found this arthritis formula Glucosamine/Chondroitin because it saved my life. I like the Swanson Solorex brand via net the best because they are not chalky, but Walmart carries a brand too.

Just wanted to share this with you to try.

Updated 2003-11-02




Cosmetic problem from tailbone injury

Elizabeth - eliz322@hotmail.com

About 4 years ago, when I was 20 years old, I received a hard kick from behind while walking down a city street. My tailbone was sore for a few days and still gets sore now and then, but I think it was bent rather than fractured since the pain was never severe.

However, the area is now deformed--the sacrum sticks out from the lower back at an unusually horizontal angle. I guess the bottom of the tailbone was kicked in and up--there's a small, more or less perpetual bruise there. At any rate it gives my behind a bizarre circular look (noticeable to others, not just myself). I want to be in good shape but I'm afraid to do any exercises that would develop the gluteal muscles since this makes it look even worse.

Basically it's a cosmetic issue, but a big one. Is there anything--chiropractic, surgery--that could move the bones back into place? I would be willing to undergo pain and expense to fix it, but not a risk of nerve damage.

Updated 2003-05-04




Tailbone - lower legs - feet

Elizabeth

My name is Elizabeth and I'm from Florida. I have been going to doctors for about 2 years now and no-one has been able to diagnose me. I [fell?] down into a pool without water in September of 2000 and for about a year after that my knees were starting to bother me, getting worse as time went on. I went to the 1st doctor, a othopedic doctor, in September of 2001 and had surgery on my left knee in January 2002. It turned out that surgery was not the answer.

I have since been to at least a dozen different doctors including the Mayo Clinic. No-one cannot find anything wrong other than mild arthritis in my knees, but nothing to explain the severe pain. I went to a massage therapist one time and she noticed that my tail bone was pretty messed up. The more she messed with it, the more severe the pain in my knees and lower legs worsened. I cannot find a doctor to validate her findings.

I have been on so much medication over the last 2 years that I found myself getting addicted to Percocets. I am now seeing a pain doctor who will only give my Tylenol 4 for my pain. It helps some and I prefer that to other pain medications as I am a working mother and do not want to be addicted to pain meds. However, I still cannot find a doctor who will agree that the fall on my tail bone could cause so much pain in my lower legs and I am still in quite a lot of pain. Has anyone that you have heard of gone through this?

Any help would be so greatly appreciated. My doctors believe that I am in a lot of pain but yet no-one can help me solve this problem. I feel like I'm slowly losing my mind. Thank you!!!

Elizabeth

Updated 2003-04-27




Help for women with coccyx pain from having a baby

Erin - econnelly@kpmg.ca

I notice the many stories on this website from women with this pain after childbirth and I have had similar pain since being pregnant with my daughter. She is now 16 months and I finally think that I have found what is causing the pain, so I thought I would share with you in case you could have a similar problem. I never fell or injured my coccyx and x-rays showed everything as normal. I have tried many things also and nothing seem to really work.

I am now going to see a Physiotherapist who specializes in pelvic floor muscles and I can now see what is causing the pain. You have muscles that run right from the front of your pubic bone to your back (coccyx bone). When I went to this physiotherapist she tested my pelvic muscles and found that the back muscles where strong but the front ones were very weak. The contraction that she was getting me to do was as though you are trying to hold back urine. But she had to teach me how to contract the back and the front at different times.

Anyway, she is getting me to do pelvic floor exercises and I know it is helping. I have been back to work for about 6 months now and sit all day. I did have my husband built me a seat with a hole at the back (after suggestions made on this site) which does help a lot but I can still feel the pain when sitting for long periods and trying to get up. So a few days ago when I was feeling the pain, I did one of the exercises of tightening my front pelvic muscles and immediately I felt the pain go away. Since those muscles are very weak still, I can't hold it very long, so when I released, the pain immediately came back. This indicates to me that this is the problem. My muscles are not strong enough in the front and too strong at the back, those my coccyx doesn't have the proper support to stay in it's correct position.

Also the physiotherapist mobilizes my coccyx internally via the rectum. It is uncomfortable, but surprisingly, when she touches the tailbone, it does not hurt. I thought for sure it would. That is another indication that it is a muscles problem and not the bone itself. This also really helped because she said that it was really stiff when I first started going and now can move it a lot easier.

I would really encourage you to try and find someone that can test your pelvic muscles (the lady I go to actually usually helps women that have problems with urine leaking or not being able to hold back from going to the washroom), before you would get any operation. I just noticed that a lot of women on the website are experiencing this type of pain that have had children. And when I think back on the pain and the periods that it was the most intense, it definitely makes sense. When you deliver a child, those muscles get so stretched and out of shape that they are not holding everything into position, including the coccyx bone. Even if you didn't deliver vaginally, those muscles still weaken from carrying that extra weight while carrying the baby. I had pain during pregnancy and it became 10 times more intense after delivering. I just remember women walking around in the hospital that had just delivered and myself not even able to move without pain. I could hardly stand and could not properly care for my new baby. After time it did improve, but I just had to avoid sitting as much as possible. But I am just starting to attempt to sit normally and am finding that the pain is diminishing as I strengthen my pelvic muscles. On my way to work today I tried sitting like a normal person instead of leaned forward as I normally do and thought for sure that I would have to intense pain in my coccyx when getting out of the car, but I did not.

So I hope this can help. I know that I was in tears when I found some relief finally. I also want to have another baby and was very scared do to the pain after the first one, but I can finally see some hope.

Updated 2003-11-16




Long and deformed coccyx

Gail - gailphippsg@aol.com

My 14 year old daughter has been in severe pain in the coccyx area, completely bedfast, having to be homebound from school for a month now. She also has vomiting, and lower back pain. The spine specialist she saw today wants to wait for two more weeks to see how she does with no pain medicines.

The coccyx bone appears to be deformed and extra long and protruding outward. The doctor says the surgery is extremely serious, but my daughter needs help. She is going downhill every day. The doctor also says she will get worse before getting better. Does this sound right?

Please advise me.

Thanks.

Updated 2003-09-07




Fell over the cat

Gogeomol - Gogeomol@aol.com

My wife fell over the cat years ago, fell on a brick staircase, and appeared to damage her coccyx. She has had pain since then but it has increased considerably lately.

We've tried injections, acupuncture, lidoderm pads with no results. We're coming closer to a surgical decision.

One of the specific diagnostics it seems is a tapping or knocking of the coccyx - if this does not produce pain the problem is either something else or further up the spine.

Sitting has not been painful as it has for so many other coccyx pain sufferers. However she has constant bowel problems that we feel are associated with the problem.

The coccyx manipulation, as a course of action prior to surgery is also very interesting - has anyone had any success in the New York City area?

Any info would be appreciated.

Updated 2003-01-12




After 13 months of pain, manual therapy cured me in one hour

Helen Buckthorp

Original posting, 2003-06-29:

Hello coccyx sufferers!

I had a fall from my cycle in 2002, and hurt my coccyx. I was repeatedly told by NHS Dr's that I had done nothing to it. They also said I couldn't have an X-Ray, due to the area being close to my ovaries. My Pain Clinic guy said "educated people tend to over-analyse things", and "we'll put you on anti-depressants....so you don't think you're in pain..." etc, etc This went on for thirteen months, when I had exhausted the system, and had no appointments left to attend. They wouldn't even give me a wedge cushion, and as a mature student, then off work due to this, (or the medication for it, which turned me into a zombie) I couldn't afford all the trimmings, continuously.

They left me in agony....and in desperation I looked elsewhere (including this site), where I gained advice from DR MICHAEL DURTNALL, a chiropractor in KENSINGTON, LONDON, UK. [See list of doctors and other specialists]

After waiting over 13 months for any sort of relief, I visited Dr Durtnall and was fixed in 1 hour.

He performed a procedure I would not have received on the NHS, despite my physiotherapist being trained to perform it. I also had a 'low dose' X-Ray, which clearly showed a dislocation. Dr Durtnall put pressure on the affected bone from internally, pushed down on it, and a click could be heard, popping it back to where it was before the impact. Hopefully it should stay there, but I will return to check, and repeat if necessary. This was painless in comparison to the agony when sitting, lasted seconds not minutes, and I was trotting down the street grinning broadly within the hour.

The additional problems due to posture, looking at the ground through fear of jarring yourself, and alternative weight bearing practises causes so much strain, I was not surprised I needed such adjustments. I would recommend the treatment, available at the 'Sayer Clinics', in Kensington & Chelsea, London, as it was the first time I was able to talk to someone who could not only recognise the injury, but also fix it.

I felt my age again (27), and couldn't stop smiling for days. The relief after so long was welcome, and although I may need one or two more treatments, I now only suffer from inflammation of the area due to me continuing to sit on it for the last thirteen months.

A very much happier Helen Buckthorp, 27 years, Devon, UK

Update, 2005-02-20:

I am still seeing Michael Durtnall monthly in London, as I am finding it helpful.

I have now seen a (nother) pain management doctor at Berkshire (as I have moved from Torquay), who is giving me a general anaesthetic next month, then seeing if it helps or not.

The outcome of this will determine if I am a candidate for surgery...although I am sure Dr Maigne did this in France, and the injection did not help. I am also still not convinced about the op.

I'll have to go through the motions with it all, otherwise they will think I'm being difficult!!

Update, 2006-06-18:

I thought I would update you on my progress since having my coccyx out in January. I'm doing ok - I still can't say I'm better as I can't sit for any longer than 5 minutes yet, and still have long periods of pain when doing so , but I'm walking a bit more like a lady now and can close my legs when I'm stood, instead of leaning over all the time. Pr Doursounian (surgeon in Paris) was very good, very professional and thinks I will make a complete recovery, but I had a lot of tissue damage as I had had the problem for four years, so the digging up of my coccyx took a bit more out of me than was anticipated. I followed your advice on the site (things I would do if I know what I do now) and I couldn't agree more- Pain management and the NHS are rarely worth the letters, appointments and painkillers, and they disregard the coccyx it just drives you insane!

I'm pleased I went to see Dr Michael Durtnall at Sayer clinics, London, as he X rayed me, and gave me hope. He was the only person I saw in the whole years who actually discussed the coccyx like it existed and moved it (rectal manipulation) although NHS Drs said this wouldn't help. Well, its state of mind I think, and if the slight relief I got for those few minutes helped, then I'll go with that. I'm pleased I saw Dr Durtnall, as he is obviously very experienced with the coccyx and gives you a straight answer on what he thinks may be wrong and if he can help. Straight answers are hard to find when you're in coccyx land, so if anyone's thinking they're crazy, read on this site a bit more, and you'll realise you're not.

I'm still using a coccyx cut out cushion, and still sitting on one bum cheek and cannot drive yet, but I'm getting there. I rely on less painkillers now, which were a problem as I was in pain day and night, and taking over 20 dihydrocodeine a day not to mention the oramorph... these drugs are very bad for the rest of your body (and mind) and they are handed out too easily by Drs wanting to fob you off. I have no regrets yet about having surgery privately in France, and although financially there is a burden, it is worth it at the moment for the improvement.

I hope you are all recovering or not suffering and please keep sharing your experiences and tips on coping. After the op, I found the added height toilet seats a big help, and the 'helping hand' grab tool-these were ideal while movement was restricted and I couldn't bend. I also used a crutch to keep other people away from me and give me more room and time when in busy places. It saves having to get funny looks when you walk slow and awkwardly.




Deformed coccyx - removed!

Helene - mushukopf@gmx.net

I'm a 22-year old girl living in Germany, and I've always suffered from coccyx pain - because my coccyx was deformed. Three months ago, I finally found a surgeon, who removed my coccyx completely and a little part of my sacrum.

In the following I try to explain how my coccyx looked like before (some things are very difficult to explain in English). I was born with a deformed coccyx: it was protruding outward and too long! Normally, the coccyx can't be seen from outside, but mine was visible - it was like a sharp elbow which came out of the skin. So it wasn't curved like a normal coccyx, but went straight down until it made an acute angle (80 degrees) and then it went inside the body. When sitting, I sat on this bone, and it always caused pain! I couldn't lie on my back either. Further, my sacrum had two little protrusions which were also disturbing. You could feel the bone, and you could see it, because it was very big! The tissues around the coccyx were always pressed. Two years ago, I fell on my back (on the floor) and my coccyx was broken. Therefore, the pain got even worse, of course. Whenever sitting (and as many of you know, we unfortunately sit almost the whole day), I sat on a pillow with a part cut off, and wherever it was possible, I used ice packs, which really was a very big help. My mind was always occupied with this bone, because it hurt all the time, so often I couldn't concentrate on other things.

It has always been my greatest wish to have my coccyx removed, but I couldn't find any doctor who would do it or who even heard about my special problem. I visited several doctors, but everybody told me the same: "I've never seen something like this", "The risk is too big", "It could get even worse, because it might not heal", "The tissues are joined with the bones, so the area wouldn't be stable any more", "You are a young woman with your life in front of you". I was absolutely desperate - I even fell into depression because of this problem. But then, I finally found a surgeon who would do the operation, even if it is a risk (which is always the case). And he told me that with this deformed coccyx, I couldn't even have children because the child wouldn't have the space to develop itself!

The surgery was done in the "St. Johannis Krankenhaus" in Landstuhl (near Kaiserslautern) (see the list of doctors and specialists in Germany). It was Dr. Hauck and his colleagues - very skilled surgeons - who carried out the surgery. I'm so happy with the result! Although it will never be absolutely normal, because the shape of the sacrum is not normal either (I can still feel it and see it a little bit), it is so great, that this disturbing bone is away!! It still hurts very much, but I hope and I think, that after a year this will be over. Perhaps it will never really stop hurting, but I can cope with this, because now I can lie on my back and I can lean backwards (although it hurts) since this stupid bone is removed.

If you are in a similar situation and you donut know where to go - I can recommend the hospital mentioned above.

Good luck to everybody!

Helene

Updated 2003-10-26




Pain came back six years later

Hillary - BigGayHill@aol.com

I would like to hear via email from anyone who can offer up some advice. About 6 years ago, I fractured my coccyx when a huge wave threw me in the air and slammed me down on the beach. I went through about 8 months of horrible pain, but was told there was nothing I could do about a broken tail bone. The pain gradually eased and I rarely had problems.

Now, six years later, I am in agony all the time. I was hospitalized due to ovarian cancer and severe complications from that, and was in the hospital in bed for 3 straight months. I had other issues which prevented me from laying in any position other than on my back. I feel this greatly contributed to the reoccurrence of all this pain.

Anyway, I was wondering if anyone has had any relief from coccyx pain by seeing a chiropractor. I don't want to waste my time and money if it isn't going to help. I cannot take any OTC meds such as Advil or anything other than Tylenol due to the complications from my cancer and chemo. Any advice via email would be greatly appreciated.

Hillary

Updated 2003-09-14




Found "my fountain of youth" with coccyx removal

Hope from Jacksonville, Florida - jhap66@juno.com

Original posting, 2003-06-29:

I seem to have found my own "fountain of youth" with my recent coccyx removal. This was done this year, 2003, by a wonderful orthopedist, Dr. Greg Keller, of the Jacksonville orthopedic Institute, here in Jacksonville, Florida. I was a semi-invalid, for 25 years, suffering from lower back pains and coccyx pains. I had various tests, even x-rays, mri's and so forth, these did not show my problem. I had various treatments, some on my own, hot packs, ice packs, massages, other, chiropractic treatments, epidurals, and all those type things. Plus, was on very strong pain and muscle spasm medications, like oxycontin 30, 4 times a day, with very little relief. Naturally, a lot of bedrest, but NO SITTING. If I tried to sit, extreme, excruciating pains would occur, and would almost faint, from this.

Some doctors seemed to think I was hypochondriac about this pain, one even stated that, others may have done so too. Yet, I have to say that this wonderful Dr. G. Keller, did not seem to think this about me. He took me for being serious, and truthful, which I really was. I thank the Lord, for helping to get to see this doctor.

Dr. Keller did my injection testing, which proved the coccyx was a problem for me. He gave me choice of either continuing these injections, or surgery. I opted for the surgery. He did my coccyx removal surgery, by a new method, less invasive than older types, and done from above the coccyx, as well. He discovered my coccyx, had not fused itself, in my childhood, as most do. He found my coccyx joints, were "open". Thus, the coccyx, was moving (wagging), as I tried to sit down, and was the cause of my excruciating pains. Oh, boy. Wowee!!

What great and numerous wonderful things have to me, since this surgery, was done. Here is just a small example of these

There are lots more, yet too numerous to list here.

Thank you, Hope

Update, 2003-07-19:

One x-ray, of the coccyx, did show some "arthritis", and since it is known to be in joints, and also known to have "drawing, burning, and pain" sensations, to be considered arthritis, some of my discomfort must have been from that, too.

I, myself, being age 59, white female, and obese, (chubby and overweight) all my life, have never been able to feel "full" when eating. Well, now I can, feel full that is. So, I am hoping weight loss, will be easier for me now, too.

I can relate to some others, whom have been in "comas" for several years, and suddenly awake to find any number of changes around them.. For example one instance of many with me, is that I had been going to same grocery store area, for several years with my husband (me lying in seat), and walking some to shop, and get groceries. I suddenly notice a new store in the shopping center, where we shopped regularly at. I decided to tell others about it, and they started telling me, hey, that store has been there, some 6 or 7 months, now. I was sceptical, so I asked the clerk, she said they had indeed been there 6-7 months. I am feeling more youthful, and happy, about myself now, I keep feeling, time has somehow been rolled back some for me, of which I am soo very thankful. I am constantly trying to "catch up" on past concerns, this alone keeps me very busy.

Hey, catch this; My husband now even calls me his "21 year old Bride". Things, can't get much better than that! Some are; even my vision is improved!!

That's it for now. Best of Luck, to everyone. from; "Hope"

Update, 2004-08-29:

Yes, I am still doing Great! Good Luck to all others!

Thank God, for "Jon's" wonderful site

Most Sincerest,

"Hope" U .S. A.




My experience and theory: post-herpetic neuralgia?

Jack - jbmobile@austin.rr.com

Dear Friends,

I am a registered nurse in Austin Texas. In nursing school, 23 years ago, I developed coccyxdynia. There was no injury or anything. The pain just started. I can remember the day it started and thinking, "why is my tailbone hurting? It has not let up since, (but has not progressed in severity). That is when I started the aspirin. I switched to Ibuprofen years later. Thank God that this medicine works because the pain becomes severe without it.

I have read with interest and sympathy some of the stories on this page. I was so concerned about the lady who fractured her coccyx in childbirth and is pregnant again. I will pray that you get relief.

For me, sneezing can really cause a flare up. Anyone else?

I have theory that some coccyxdynia pain may be associated with an herpes infection. Viruses live in nerve plexuses. I think my pain started not long after I contracted this virus. So I can help but think that there is a link with my pain and this infection. Post-herpetic neuralgia? Who knows.

Thank you, Jon, for the site. I may seek help for an ortho guy to discuss some alternate treatments rather than continue with 800mg Ibuprofen a day.

God Bless,

Jack

Updated 2003-05-11




Coccyx treatment - just had the injection of corticosteroid

James Morris - jmorr@optushome.com.au

My experience of coccyx pain occurred 6 years ago when I went to sit on a couch chair arm and instead hit the couch leg. Needless to say it hurt and bought howls of laughter from my family at the time. I have put up with the pain on and off for the last 5 years until I did a Pilates class.

The class actually aggravated the coccyx injury to an extent that I finally went to the GP for treatment ideas. I had come across this site a while ago and was a lurker until I got the pain on a constant basis after the class. The first treatment was Physio therapy - this had some success with me finding a physio who had done a course on manipulation. This did provide relief over the Christmas period just gone (2002).

When this no longer worked, I was on Voltaren Rapid 50 mg which at first worked then lost the effectiveness. Finally I got a referral to an Orthopaedic surgeon in Brisbane. I was refereed to Dr Paul Licina of Brisbane Orthopedic Services based at the Holy Spirit Hospital in Wickham Tce, Brisbane. I had to wait until February 2003 to see him - a wait of 5 months......

Once he saw me he explained that the pain could come back and the procedure could not be guaranteed. There is only one way to see if it works - handed over the money and was on the surgery list in 3 weeks time.

The procedure was done at Holy Spirit North, Chermside Brisbane. I was admitted as a day case (private) and out by 1 pm - time to get over the sleeping drugs.

I was put into a light general anaesthetic under my own breathing - the anaesthetist was very good and explained what would happen during the operation from his side of the procedure. About 20 minutes late I woke up in recovery feeling quite drowsy and had a nice sleep.

In the evening when writing this, I have had little pain from the coccyx but was told it would take up to 7 weeks to feel the full benefit from the procedure. So far - all is well.

James Morris

Updated 2003-03-16




My very first broken tailbone

James Taylor - zachart@CLEMSON.EDU

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.


My name is James Taylor (no, I wasn't named after the singer). I had a tailbone injury back in September of 2003. I am a college student and a bunch of friends and I went out to the nearby lake to off a huge rope swing. The drop from the top of the rope swing to the water was measured at 35 feet. So, if you hit the landing wrong you could seriously injure yourself. I went off of the rope swing a couple of times and felt no pain. The third time I went off the swing, however, I came up to the surface with excruciating pain. I refused to go off the swing anymore that day. After a couple of hours the pain subsided...or so I thought. I went back to the rope swing a couple more times that week before I went to the doctor.

After two weeks of extreme pain and soreness, I decided it was time to go to the infirmary. I was consulted by a doctor. He said that I did not need x-rays because he knew from his tests that my tailbone was broken. For the next four weeks I experienced severe pain to my coccyx while sitting through my classes. I was too ashamed to carry a soft pad or donut around to sit on.

After about 2 months I fully recovered from my injury. I am happy to say that I'm free of any coccyx pain! I have met one other student at my University that has also had similar coccyx troubles. It is always good to find someone to share my story with and to find a source of support.

I love your website, I definitely am thankful that I am not alone in this.

Sincerely, James Taylor

Updated 2003-12-14




Piriformis syndrome post surgery

Jayne Gerrard - JayneGerrard@aol.com

Following a coccygectomy in September 2002 I developed piriformis syndrome with quite severe symptoms. I have just seen my consultant who has offered me an operation to deal with this problem.

If anyone has had this surgery, please could they contact me and let me know exactly what's involved and what outcome they had.

Many thanks

Dr. Jayne Gerrard PhD

Updated 2003-03-16




Pain, pain, pain

Jean in the Northeast Kingdom of Vermont

I am a 69 year old female who first had pilinoidal sinus surgery in 1962. Totally successful surgery without recurrence since that time. Several weeks ago I got up in the middle of the night because I wasn't feeling too well. I looked in the mirror and said, "My God, I am dying!" I woke my husband and he immediately took me to the ER, where my blood pressure was 60/40 and I was in acute renal failure. Well, after moving me to a "city" hospital and after every test known to mankind to rule out stroke, spinal meningitis, etc., and after all sorts of MRIs, spinal tap, etc., and lots of antibiotics, the diagnosis was sepsis of unknown origin. After 12 days I was released to go home.

Now to the relevant part. In 1993 I fell to the tarmac while getting off a commuter airline, breaking my back in three places as well as a finger and putting a hematoma on my head. I have permanent spine damage. One of the breaks was my tailbone. About 2 weeks after leaving the hospital, I have the same pain I had before my surgery in 1962. And yes, the release of pressure is worse than sitting down itself. I am in agony.

I guess my question is what to do. What kind of a doctor should I see? Where I lived before I had access to exceptional medical care. Now, although the care is good (and bless them the ER folks in that little country hospital saved my life), I just don't know where to start - or if to start. I am afraid of surgery, although I never have been before (and I've had lots of it). After coming so close such a short time ago, I don't know whether to grit my teeth and live through the pain or try to get help. I wonder whether what happened has triggered this symptom, just as it has my terribly stiff neck. Any ideas?

Updated 2003-04-27




Dislocated and fractured

Jen - Sweetjenjenn@aol.com

Original posting 2003-01-12:

I am a 30 year old mother of 4. And really did it well. I was up on a high back chair putting the lights around the top of the Christmas tree, went to step down and the corner of the chair slip right up my bum crack and you got it, slammed right into the bottom of my tail bone. OUCH! Now I can handle pain, but I was speechless, I think more afraid that if I opened my mouth anything I had eaten would come out.

That was a Saturday, I waited until Monday to go to the doctor, knowing even if I did crack it there is nothing they could do. Well, I separated my coccyx from the sacrum from what they said and it's pushed up and to the right. Here I am about 6 weeks post break waiting for an appointment to an orthopedic doctor. The bone is starting to fuse, but into the location it was dislocated to. I asked if they could just set it and primary says no, more then likely will have to be removed. My heating pad is my best friend, and vicoden my pal.

Sitting hurts, walking too much hurts, can't lay flat because I can feel the lump where it is, you can see the lump where it is. Guess I'll find out soon if it's to be removed or not. I'm more leaning toward that then anything, I don't want a lifetime of complications from this.

Update, 2003-07-13:

Back in December I had stepped off a chair and the corner of it slammed the bottom of the coccyx, fracturing and displacing it. I went through all the "conservative" treatments, anti-inflammatories, PT, shots, aqua therapy, ultra sound, rest and to no avail. I saw three different orthopedic doctors and finally it was the last one who sent me for an MRI to get a better idea of what was going on. First, it was beyond the coccyx, I have a bulging disc and tear at L4-5, a suspected compression fracture as well as end plate damage. The coccyx was sitting an angle in a 90 degree turn. Ouch. So afterwards we talked. He asked what I wanted to do. I asked for some thoughts from him. Well, it's been 8 months and the pain I am in was no likely to get better, I could make the decision to live with it, or remove it. But, cautioned there is only about a 50/50% chance that will help. Well, 50% is better then none so I went for it.

I am 2 days post-op and won't lie, I've never in my life had pain like this, but don't regret it either. I would suggest to anyone about to go through this, eat very light the night before, I added to my misery by eating a regular dinner and then not being able to pass anything. It's painful to try.

I'll post here and there and let you know how I made out later as time goes by. Until then, just praying I'm in the 50% that it works for.

Update, 2003-08-03:

Well, 9 days post-op. I feel mostly human. I think I have forgotten how it feels to sit comfortably anyway.

I'd say the first 5-6 days were the worst. In addition to the pain of the surgical site, I had major pain in the "cheeks" like deep bruising. I assume it was from whatever they use to separate that area? They sent me home on Vicoden which was a laugh and after many tears of frustration and just hours of major pain I called. Was given Percocet, now that's a decent pain killer, but it didn't touch the pain and I was getting very worried that something was majorly wrong. I had so much swelling that the pressure inside was making it impossible to move my bowels, you name it I tried it. I have even gotten to the point where I can drink prune juice without making a face. For now I have left all prescription pain killers behind and have found ibuprofen to be the most effective for me. I had to wait for anti-inflammatories as I was on blood thinner for a week post-op due to a blood disorder I have. My stitches are really bothering me, and yes, of course the "new" tip is a spot of irritation but I have much less lower back pain then I had before surgery. I read some of everybody else's after stories and came away with some questions I should have asked my doc before the surgery. I was never told to not sit, only to resume normal activities as I am comfortable. I forget who else suggested the stool softener for before, and not to seem obsessed, but do it. There is enough pain to deal with after surgery, no need to add to it.

I am taking things one day at a time, I try not to spend too much time in bed, my hips hate me. I think my whole butt is swollen and has grown a size or two :) I make small strides daily, and am optimistic about the outcome here. All I can hope is if the surgery doesn't make it better, is that it doesn't make it worse either.

I'll try to post here and there, I know I enjoyed reading the after stories as well. I just wanted to say, I did do most other treatments that were out there before I resorted to surgery. I did PT, water therapy, shots, massage, rest. My back just got worse and worse and pain was spreading. Due to the way the break was we knew it would never "heal" per se. It would always be dislocated, the hope was scarring would help to stabilize it. I went to three different OS before I found one who would do this, and that was only after he checked on my other treatments, did his own x-rays and an MRI. I think it helped as well that it was a teaching hospital. He was very clear in that he felt there was only a 50/50 shot at this working (much lower then I've read elsewhere) and that the biggest risk is infection. Don't give up if it is really that bad. This is your life, and it was effecting my quality of life way too much.

Update, 2003-08-10:

Well, it's going on a month since the surgery. I feel most of my energy coming back. Sitting is still a sore subject, it has to be a firm surface, and not for very long. I am walking fine and have started to do my sports walking. Not as far as what I had been doing, but am up to about a mile a day. Lifting is OK, umm, still can't lay flat on my back.

Is it better? Well, I no longer have the SHARP pain which was to a point where it was constant. I still feel very optimistic. I saw my surgeon and discussed some of the other back issues and have to be honest, short of it being MAJOR I will not do back surgery again. In addition to the tail bone fracture I have a bulging disc with tear and evidence of a compression fracture.

So, am I glad I had it done? Yes, I am, and have no regret. I know that this can take time to heal, but at least now I feel like I have a better shot of healing now that the bone is not there inflaming the area.

I am mostly off pain medication, taking it more at bed time then anything.

I don't know how much this helps anyone trying to make the very important decision on whether or not to have this done. I just know that for me it was the best, and the right decision.

Take care,

Jen




Please help - I can't take it any more!!

Jen

Original posting, 2003-06-08:

Hi there. I suffered with severe coccyx pain in 2001, 2002. After seeing two doctors for pain - both doctors said I had a coccyx in the shape of an 'L' - and that was causing the pain. Cortisone injections only provided relief for 2-3 days. I had 4 different series of injections from 11/2001-3/2002.

Finally my orthopedic surgeon scheduled for me to have my coccyx removed. Surgery was set for April 16th, 2002. He removed (2) bones from my tailbone- right where the curve took place. One week after surgery I was in severe pain- I went to the ER and said what pain I was in and was having discolored drainage from the incision site. They sent me home after providing with a pain injection. Four days following the ER visit - pain was still intense - drainage was very mucousy and discolored - however, my doctor was out of town until May 10th. so, I went to his partner- that doctor looked at it and said he thought it was fine.

I returned to my job 2 weeks after surgery and worked (4) hour days for 2 weeks. I had to drive a half hour each way to work and I have a job where I mainly sit, so I also sat for those 4 hours, and kneel at times as well. I could not sit on any cushion because the infection was pocketed in both sides of my buttock cheeks- so it was painful to sit on a cushion- I basically sat side to side often. I returned back to work in full capacity only 4 weeks post-op.

On Mother's Day of 2002, 4 weeks after surgery, I was kneeling by my computer and it felt like my nightgown was wet- and it was! I had white discharge all over my pyjamas- my husband took me straight to the hospital- where they said I indeed had a serious infection on both sides of incision- and they had to cut through some of the internal stitches and reopen healed areas and drain pockets of infection and pack with antibiotic pads. That week while seeing my regular doctor- he noted that culture came back on my infection and if was Staph - and worst of all - MRSA. I was on Bactrim for 3 weeks - had to do baths - and had to have my incision packed 3 times a week for 2 weeks. My doctor moved from PA in June - so I had no one to follow up with.

I saw a wound specialist in July, who said there was nothing he could do for me- he stated there was at least a good (2) inch-thickness to bottom of scar on incision line- and to mess with incision would mean creating more scar tissue- he said I could try to smooth out scar with lotion. By July- I was having immense pain in that scar area, as well as a 'new' pain approximately 3 inches above my incision line. This new pain is worse than my original pain- it's like a constant pressure- the area becomes very warm and very painful.

From April 16th, 2002 to July, 2002 - I was taking Darvocet every 6 hours for pain relief. By end of July, 2002 I was prescribed Lorcet every 6 hours. My pain was still bad throughout all of last year In January I was sent to a pain clinic for pain management. This doctor tried cortisone injections that were ineffective with pain relief. MRI was ordered which appeared normal. Whole body bone scan was ordered, which appeared normal. My lab values indicated an elevated CRP level, but normal SED rate - that was in January. With no pain relief, doctor prescribed morphine and lorcet. Morphine was ineffective. In attempt to manage pain without narcotics, my MD prescribed 600 mg Ibuprofen every 4 -6 hours - this was totally ineffective. I was put back on Lorcet every 12 hours - however, my pain was only relieved for 5 hours.

I tried a chiropractor in March and April - I went for five sessions - this doctor used a tool called an activator - I was in tears every session - the pain was absolutely off the wall when that tool was used in the area around my surgical site - and I began to bruise - which the doctor said wasn't normal.

I recently went to a back doctor in Pittsburgh - he stated he couldn't help me because it was not a specialty for him. He recommended a general surgeon to do a colonoscopy. I saw the surgeon this past Monday July 02, 2003 - he said he doesn't think the colonoscopy has anything to do with anything that would relieve pain for me - but he would perform it and see if he sees anything - if he doesn't - he would re -inject my back with cortisone. I had labs done again - my SED rate is now elevated, and my CRP has increased in elevation from last values in January.

I am now on Lorcet - 650 mg - every 6 hours - I still have terrible pain - and I am just at my wits end! I have been on Lorcet now for 11 months - I still can't sit right - at work I sit on a cut out cushion - which helps where I have the thick scar tissue - but not the other pain in the coccyx region.

I am sick of hearing doctors say it isn't their specialty - I told my husband that I feel just like dying so it would go away - I feel like everyone thinks I'm off my rocker - although he tells the doctors he has felt my back and how hot it gets - but no one seems to care. Does anyone have any advice or help they can offer out there? I live about 2 hours north of Pittsburgh, PA - please - someone has to have an answer - I can't stand it anymore. I'm sick of my doctor saying - "You know, you can't keep going on with narcotic use for this long - we have to figure something out!" - I gladly would if I could - after reading a lot of your stories on this site - I thought someone out there may be able to help!

Update, 2005-02-27:

It's been almost 2 years to my 1st posting, and unfortunately, the road has not gotten any easier- I still have significant pain in the coccyx area, but especially in the SI joints and lower back- ever since my surgery in April of 2002 that removed the last 2 bones of my tailbone due to arthritis. I have since been diagnosed with rheumatoid arthritis and fibromyalgia- however, have been told that the arthritis is not likely causing my back pain; I have been to 2 pain clinics in Pittsburgh PA- last March I received a facet rhizotomy on my right side, which doesn't seem to have helped with the pain. I did receive a TENS unit, with no relief.

I receive injections in my SI joints every 3 months, and those relieve the pain to a tolerable level! I remain on Lorcet now, for almost 3 years now- and have to take it every 4 hours- my doctor said I really don't have a choice, pain relief is a must at this point.

It seems I've been through it all- I'm discouraged, disappointed and most of all, defeated. It is hard to work day in and day out in pain, sitting mostly at a job- taking pain meds every several hours...it is a hard path for sure! I appreciate the thoughtful e-mails that I receive though from time to time--just when it seems I'm at my low, I have some 'angels' out there reminding me I'm not alone and cheering me on- thank you, you will never know how much your words mean to me!

For those of you who have had success- congratulations- it's not an easy road... for those who haven't- the road can be long- but know that you have friends along the way!

Jen




Had pains in the butt for as long as I can remember

Jennifer - jenn.horton@europe.com

I have had "pains in the butt" for as long as I can remember (no injury ever occurred). I was the person in the classroom who was always shifting in my chair or getting up to stand in the back. I figured that everyone's bottom became sore after sitting for extended periods of time and that I was just a wimp who couldn't take the pain. That was all before I came across this website.

My husband and I are stationed in Germany. He is on active duty and I am a reservist in the Air Force. Since we have been over here (two and a half years) we have made a couple trips to and from the states. That is when I REALLY noticed the pain. I even started experiencing the sharp pain when going from a sitting to a standing position.

After our recent trip from the states I went online and typed in "pains in the butt". That is how I came across this site. I was ecstatic! My husband thought that I had won the lottery when he saw me reading all of the info. Of course he thought I was a little crazy but I was so relieved to see that I was not!!

The next day I made a same-day appointment with my physician. He examined me and took an x-ray. The x-ray only showed that I have a "hooked" or "rounded" coccyx. My physician gave me a prescription of Naproxen (did not help) and gave me a referral to Physical Medicine and Rehabilitation. Since Landstuhl Regional Medical Center is very busy these days I was referred off base to a German specialist. The doctor is wonderful but I am afraid that she won't be able to help. Unfortunately I have to see her 9 more times because that is what the military paid for. I am hoping that when I am finished with her she will refer me somewhere else. We'll just have to see.

I have to mention an awesome coincidence! A couple of nights ago I was reading the new experiences when I came across a letter from Helene. She recently had her coccyx removed at the German hospital just down the street from where I live. The clinic I am being seen at is on the same street as her doctor. I never thought I would see anything like that so close to home! So thank you for this site!

Good luck to everyone. I hope you all find the help and success you need.

Jennifer

Updated 2003-11-16




Fell on my wazoo skateboarding - Shapiro made me 90% better

Jim - jimmyjones_1234@hotmail.com

I am 28 years old as of a week ago, and when I was in my early teens I used to be a hardcore skateboarder with my own half pipe in my backyard. I recently moved to Chandler/Mesa Arizona about a year ago. I was amazed at all the skateboard parks they have here. I thought it would be cool to get back into it and it would also provide something fun for my boys (2 year old and 4 years old) to get into and I could teach them. So, I began going to the skate parks a few times a week and it was fun. Then one day it happened. I fell on my wazoo and it all went down hill from there. What was weird is the pain did not appear right away. Slowly over a few months it began to hurt to sit (I fell in October 2002). I just dealt with the pain, kept skating, and began spending more time teaching my boys and we even built our own 4' x 16' x 30' ramp in our backyard. It's more fun then jogging and just as good of a workout. Anyway, I actually thought for a while that the pain was a result of me losing 60 pounds and that my butt just got too boney and had no cushion for sitting any more. Then after about 6 months the pain just got too bad. Sitting down became so painful that I had to basically lean sideways. I am a software engineer and so I sit quite a bit. I finally put two and two together and realized that the fall at the Chandler skate park was the culprit.

I had always been skeptical of chiropractors but I decided to go to one anyways. I won't mention his name but it was basically a total waste of my time. He was "out of network" so I paid a few hundred bucks out of my own pocket. Every other day it was the same thing; he would twist me up like a pretzel and then put some electrode machine on my lower back. He said this would fix things after a few months. After about 250$ and no improvement I decided I had enough and quit going to Mr. X. By the way, the guy did not even come close to my coccyx area when treating me. I was basically so desperate for a fix that I just hoped he would cure it with chiropractic magic dust or something, but it led to nothing. So, I just continued to deal with the pain. Then a few months after that I decided to go to my primary care physician and he of course said there was basically nothing he could do except order some X-rays which the first guy did as well. They both said things were normal. He then referred me to an orthopedic surgeon who pretty much did the same thing as my Doc. He felt around a few places and then told me he could cut out my coccyx. To me this seemed to be a little extreme. So, I decided to think it over a few weeks. He also explained to me that since it's so close to the sacrum there is always the risk that he could cut to deep and mess things up there. I pictured a 28 year old guy at the skate park with a blatter bag hanging out of his pocket and that was not good.

So, it's been almost a year now. About a month ago I decided to come back to this site one last time. I checked out the list of people in AZ who treat people for this. I found a newly added posting from Dr. Grant Shapiro. To make a long story short, he looked at me the first visit, could tell immediately that my coccyx was pushed inward (when Mr. X said it looked just fine) and that an internal adjustment was necessary due to the severity. I thought about it and figured what the heck. He did his thing which took only a minute or less. The first few days were still painful; I even had to stop jogging for a few days because it hurt so badly. The first few visits after the initial manipulation were spent massaging the tendons right around that area which was very sore. Doctor Shapiro said I had the worst case he has treated, I think because I had so much damage to the ligaments in that area from the coccyx being so out of place for almost a year.

Now, a little over a month I would say that I am about 90% recovered. I can actually run my finger down my spine now and it does not hurt, I can sit pain free mostly (I still use my little coccyx pad of course), and I can lay sideways on the couch with my legs in awkward positions which I could not do before without suffering. I can also sit on the floor to play board games with my kids which I could not do for almost a year now. A few months ago the pain was excruciating at the tailbone area. Dr. Shapiro ordered an ultrasound to see if there is any more tissue damage in the area, and I should get the results next week. I never really expected to recoup this much, especially without any surgery.

What is amazing is while waiting for him one day, I started looking at one of his books in the office and I found the same manipulation he did on me. He did not make it up, he just follows what he says he learned in school, which for some reason a lot of chiropractors seem to overlook (on this specific area).

I call this my $1k fall, but a year later it looks like I am finally healing hopefully to 100% but I am still a little shy of that but it's no comparison to what is was two months ago. Now I just got to figure out how to keep this from happening again, I enjoy spending the time with my boys teaching them how to skate. I did some research on the internet and there are padded shorts you can buy for sports active people like me. For now I am trying out a homemade version using shorts, spray glue, and two layers of carpet padding.

Anyway, that's my story. I know that removing the coccyx works for some people, but my experience is use this for a last resort and ask around for a good chiropractor that has experience in this type of procedure. I would even recommend calling Dr. Shapiro just for some advice. He actually talked to me on the phone before I came in for the first visit.

Updated 2003-09-14




Operation by inexperienced doctor

Jody joknecht@comcast.net

I have been in pain five years but getting better! I broke the tip off my tailbone giving birth 31 years ago. It hurt for a while but got better fast. Within a year I didn't even notice it. I had a lower G.I. six years ago and all hell broke loose with pain. I had my tailbone removed and then the surgery got infected. I spent 8 days in the hospital with PAIN and a fever of 104. Afterwards I asked the doctor how long it would take me to heal and the pain to get better. He looked me in the eye and said, "I don't know, I have never done this before"! I could have fallen over right there! Please if you are thinking of getting yours removed, get lots of options from doctors who have done it before and not are out just to make a buck.

One of the reasons I had the bone removed was that I would wake up at night with severe pain in my bottom. I thought it was the tailbone as I knew it was "really broken" completely off at the tip. That wasn't causing the pain. It was cramps in my opening to the colon. I found an old medication called Quinine, it helped a lot to stop this cramping.

I have developed an odd reaction as when I have intestinal problems my teeth hurt first?! How can this be? When my teeth start hurting so does my tailbone. I found out I had an infection in my intestines! I don't understand. What makes this puzzle of mixed messages of pain? Has anyone else had the similar or the same problems? Please let me know if there is a way to figure all this mess out. Does anyone else share the same problem? How do I know where the true pain is coming from?

I found one thing that really helped the pain from the surgery. It is Chinese healing oils called Kwan Loong Oil. I used just a little oil twice a day. It is warming so go light. After five years of pain I developed a scab on my sacrum where the bone had been removed and the pain subsided! I didn't have pain as bad until I got the intestinal infection. I thought it was my teeth and that the tailbone had just started hurting again. This is insane!

Jody

Note from Jon Miles:

I have not heard of intestinal problems causing a pain in the teeth, but mixed pain messages do happen. One well-known one is that gall-bladder pain causes a pain in the shoulder. Somewhere in the nervous system, wires get crossed, and pain seems to be coming from a part of the body that is not affected at all.

Updated 2003-10-19




Ehlers-Danlos Syndrome, hypermobile type

Anonymous

Posted 2003-06-15

My life almost fell apart from waiting and waiting for surgery. I was on morphine for two years or so and before that percocet. I would recommend morphine and not worry about addiction. Depression also affected me and I was on Paxil which I do not recommend. I was sick for a year after taking that. It was harder getting off Paxil than it was morphine.  

I had to wait two years for surgery in Thunder Bay, Ontario as there is a doctor shortage, so I went out of province to get it done sooner. I was sent for all sorts of tests in Thunder Bay which wasted my time. I got my coccygectomy in January 2001 in Winnipeg, Manitoba. The surgeon said nothing will show coccydynia. He even asked me why nobody would do the surgery for me in Thunder Bay. He met me in October 2000 and scheduled surgery January 2001. I was given an epidural and a light sedative so I wouldn't hear them taking it off.

Two months after my surgery I stopped taking the pills and started working in May 2001. My life is great now. I work two jobs in the health field and I will be going to college in the fall of this year. I feel great. I still get pain if I sit too long or the wrong way.  I still have the urge to take a pain killer, but I get over it.

My surgeon was Dr. Warren Froese, in Manitoba (see Doctors and specialists in Canada).

Update, 2013-11-24

After years of dislocations and joint pain throughout my body I was diagnosed with Ehlers-Danlos Syndrome, hypermobile type. This is a genetic connective tissue defect. I presume many people with coccydynia have this. It's rarely diagnosed and many doctors are unaware of the syndrome. Rheumatologists usually diagnose.




Fell backwards in the street, got a bruised tailbone

Jon Ellingboe in Rowland, Pennsylvania - jce1@ptd.net

I am 38 years old and am currently having chronic coccyx pain. I have yet to see a doctor, but I have an appointment to see an orthopaedic specialist. I have degenerative disc disease including foraminal stenosis and a bulging disc as a result of those degenerative changes in my lower lumbar spine. I fell backwards recently while coming home from the grocery store and forgot that the hill was wet as it rained the night before. So I fell back ever so graciously and landed on my...

Since then, the pain has gotten so bad when I sit, when I stand and sometimes, but not always when I walk. I also have a distorted pelvis which a chiropractor is in the process of hopefully fixing. But the bruised tailbone, as he called it, there's nothing he can do for me.

So here I sit in pain and I came across your site on the internet. It's been very helpful and I thank you for it. It seems that no matter where I am or where I sit it hurts. I can't enjoy going to restaurants without having to stand or to mass as I enjoy going to because I can't sit that long. I'm not sure what the correct diagnosis is, but anything you can suggest it might be will suffice. I feel it sometimes to see where the pain is and it seems to be at the very bottom of the tailbone. I never heard of coccyx pain until I felt it myself and then found out what it was through your website.

Jon Ellingboe

Updated 2003-07-19




Bone scan after numerous other scans

Karen - karbar@hfx.eastlink.ca

Original posting, 2003-08-03:

After seeing just about every doctor in this city I am now going for a bone scan as the numerous C-scans, X-Rays, and every type of doctor cannot find out why I am in so much pain, it went from an abscess up in my rectum to severe chronic yeast infection to - a shrug, a shake of the head to maybe I should see a psychologist, however I don't think I am imagining the fact I cannot walk up stairs or down now. I cannot lie on my back, side or sit any way but on one hip bone or the other. I have a prescription for cortisone which I hope will not get filled, as I have had experience with cortisone which was not favourable, I have bottles of pills that do nothing, a warm bath makes it worse and now standing & walking is very uncomfortable. I have two very large gardens that need looking after and which I use to enjoy, now it is a chore I leave for my husband. We cannot even go on vacation or take day car trips as sitting in the car is almost unbearable. I drive 25 minutes to work each way and there are days I have to stop and get out as my right leg goes numb from sitting on that hip.

I sit at a computer all day or try to do everyone's task that involves standing. I am a 62 year old female with a very bitter attitude. I live in a city that boasts the best Medical school in Eastern Canada, and yet I cannot get someone to make this horrible situation better. My family doctor has confirmed or he thinks I have coccydynia, and friends in the medical profession have said "the removal of the coccyx is done quite often with great success", well I wonder how long a person has to suffer!!!

I am so happy to have found this site and to hear the positive results sufferers have received. I have had low back problems since I was a child but it has been since January of this year that it has become so severe that it is almost debilitating. I would hate to think that I would have to give up working as there is nothing that would make it any different.

Reading the experiences of others on this site is so great, as I never knew there was such a condition, and now I don't feel so alone or that I am imagining this.

Thanks for listening, Karen

Update, 2003-09-28:

Well again after the bone scan for which I waited 5 weeks for the results, I was told "nothing unusual for someone my age" (I am 62). I was advised if I was still uncomfortable, I could go to the pain clinic. I told my family doctor I would see a chiropractor, which he agreed and mentioned a couple of names. I started with Dr Squires three weeks ago and as she said I have a badly inflamed coccyx, sciatica nerve and pudendal nerve entrapment. She is excellent and has given me a lot of attention and is quite concerned that she is unable to do too much as I am in so much pain. She had suggested I take the anti inflammatory prescription which my doctor had given me back in April, but every type of medication and I end up with my stomach giving me a lot of grief, you just can't win. Also I sit on an ice pack when ever I am home or in bed, which is helpful, but after yesterday she has stated she will have to do the internal manipulation which she has done on several patients. She also suggested I take a month off work as I must sit all day.

I have read the posts on this site from those who have had the internal manipulation and it sounds as if it might be the answer. I am in constant pain as I also have fibromyalgia, so along with the sciatic nerve thing happening and the PNE I just want to get back some quality of life and I also want to be able to sit in the car for longer than 20 minutes.

I would like to thank the people who wrote to me, it is always so great to hear from others in this condition. Take care all.




Had coccygectomy after other treatments failed

Karen - thestahmanns@yahoo.com

I just recently found this website, however, somewhat late after the fact. I had my coccygectomy on August 13, 2003 and am happy to report I am doing well.

One day in May, 2002 I noticed it hurt when I got up from sitting. After a while, I realized the pain was there to stay. I did not fall or otherwise hurt myself and was trying to rack my brain for some explanation as to the pain. Several months prior I had decided to lose some weight, with success, and had started some exercising. This was basically the only thing different from before the pain. About a month into it, I decided I need to take action and so started my ordeal. Over the course of the next year I had chiropractic treatments; tried cold, then hot; ibupropen and prescription anti-inflammitories; for a while I did nothing at all; had X-rays that showed nothing; tried physical therapy with cortisone patch treatments - all with no relief. My pain was very specific. I had one spot that I could pinpoint at the tip of my coccyx where the pain was. There was no other problem and I could do everything else pain-free, except sit and get up.

Finally in June, 2003 I told my doctor there had to be an explanation for the pain and couldn't he do anything. I had an MRI, that showed no bone abnormality, but he ordered another x-ray. After reviewing these, he determined that my tailbone was tipped to one side, wasn't as flexible as it should be, and was very protruding. (I did confer with my physical therapist who agreed she found the same things in her exam). He then suggested a coccygectomy. He felt the tailbone was pressing down and causing the pain and removing it would be the answer.

Like I said, I had surgery on August 13, 2003 - exactly 15 months after I first noticed the pain. The surgery was not bad. It took less than an hour and I was home that night. Absolutely no sitting for 3 days. I took pain pills for probably a week pretty regular. Of course, my butt was very sore and you didn't want to sit anyway so that was no problem. I had my stitches out 2 weeks after surgery. Everything healed very well-no bleeding or anything.

We have a dairy farm and I also have an insurance job. I was out in the barn doing light chores about 10 days after surgery. I went back to work 2 weeks after surgery-starting out for a few hours and increasing. I have a desk job so that was difficult but I would get up frequently and I put my keyboard on a box on my desk so I could stand up and work when I just couldn't sit any longer. Driving is also difficult as it is hard to sit in those seats. I was surprised how tired I was even several weeks after surgery. Most days I came home from work and had to take a nap.

I must admit I didn't do much research before my surgery about the surgery. At that point nothing else had worked and I was sick of being in pain everytime I sat down. My doctor was confident this would help so I went for it. Of course, I didn't realize that the actual recovery was many, many months. It is 9 weeks since my surgery and he tells me my recovery is on schedule. The 'pain spot' I had before is gone and the actual surgery pain is gone. The pain I have now yet is from the healing process still going on.

FYI - I stopped and visited my chiropractor at the 6-week mark and mentioned I thought I still had a significant amount of pain.. She suggested I try Arnica gel - it's a homeopathic gel for muscle pain and stiffness gotten at the health food store. I tried it and I think it did help. In fact I am still using it. My doctor said it was OK - it certainly wouldn't hurt and the massaging would also be beneficial. [Note from Jon Miles - although Arnica gel is described as a homeopathic medicine, it is not homeopathic in the normal sense of that word - homeopathic 'medicines' normally contain none of the actual ingredients on the label. Arnica gel is different - it does actually contain Arnica.]

I am hoping that in time my recovery will be complete, but, even if it's not. the way it is now is much better than before. In looking back, I think I may have had this problem for quite some time. By losing weight, though, my butt got smaller. My tailbone was not as protected and more exposed thereby causing the problem. I am sometimes overwhelmed at the thought that this will soon be over and I will be able to sit wherever I want and get up without pain like a normal person.

I hope my information is helpful. Like I said I didn't find this website until after my surgery but I don't think I would have done anything different. I have been glad to read the other experiences and know that things are on track and I am not the only one out there with this problem.

Karen

Updated 2003-10-19




Coccyx doctor in Pittsburgh?

Kathy - krb@stargate.net

If anyone knows of a doctor in Pittsburgh please let me know.

Ten months ago I had my daughter and right away knew something was wrong. It seemed like no one really believed anything was wrong. After seeing doctor after doctor I am very frustrated. I have had some pretty ridiculous opinions from them. It seems that some of you out there say you need to find a doctor with experience in this particular area. I am having trouble finding one.

Everyday I wake up and know that I am going to have another difficult time. I am 23 years old, just married, and we own a bar. Thank god I don't work for anyone else or I would have been fired a long time ago. There is not a week that goes by where I am doing everything I can to not go to the ER because I just can't take it anymore. This has severely affected every aspect of my life.

If anyone knows a doctor in Pittsburgh that has dealt with this please let me know.

Thanks,

Kathy

Updated 2003-04-27




Jumping off 70 foot cliffs

Katie - kroeber@bigskyresort.com

I injured my tailbone severely while jumping off 70 foot cliffs. The surface of the water cracked my tailbone on impact. The pain was excruciating and nothing helped. My stomach was constantly upset with all the pain killers I was taking to try to get the pain to go away.

I finally went to a message therapist and he recommended a topical ointment called Traumeel. It worked wonders. It didn't take all the pain away, but I was able to sit for a lot longer without discomfort and I was also able to stand up a lot easier. I recommend that everyone with a tail bone injury try it for a couple days.

Katie

Note from Jon Miles:

I found details of Traumeel ointment on the web. It was described there (wrongly) as a homeopathic medicine based on all natural ingredients.

Normally homeopathic medicines are so diluted that there are none of the original ingredients left at all, and so they can have no effect. But Traumeel includes several herbal ingredients which are not heavily diluted. Traumeel is therefore in fact a conventional herbal medicine, not a homeopathic one. I found medical papers on PubMed  which showed that Traumeel ointment has been tested and shown to reduce inflammation.

The ingredients of Traumeel also include mercury, which is a poison, and which few people would describe as 'natural'. However, the mercury is described as '8X', which means that it has been diluted to 1 part in 100,000,000, so it is unlikely to do you much harm.

The web page about Traumeel at http://www.naturedoc.com/products/traumeel.html contains a disclaimer: The information and products on this web page have not been evaluated by the Food and Drug Administration nor are they intended to diagnose, treat, cure or prevent any disease.

Updated 2003-08-10




Surgery failed, rhizotomy a success

Kelly - hoxseybk@sbcglobal.net

After 4 months of pain (doctors think from too many spin classes) I started seeking treatment. I had the usual series of failed injections. After 7 months, I had a coccygectomy. The recovery from the surgery was VERY painful and VERY long. My surgeon kept telling me to wait that it would heal and I would get relief. No relief came from the surgery.

I then began seeking help from neurosurgeons and was referred to Dr. Jerry Holubec in Plano, Texas. To my surprise, he also has an article published on this website! Dr. Holubec is a pain management specialist who performed rhizotomy. Rhizotomy uses an x-ray machine to see where the needle is going and actually lasers the nerves! The laser burns the nerves from sending a message to my brain that I'm in pain. At first I was skeptical, thinking that it was so similar to the x-ray type of injections. The procedure was so SIMPLE. It was a procedure that lasted less than 15 minutes under mild sedation. I went home and slept the rest of the day. Dr. Holubec told me to be patient and let the process work. The next few weeks brought depression because I still had pain and every other doctor told me to wait also. After a month, my pain was reduced by 75%! It's been 3 months and my booty is PAIN FREE! The only time I have pain now is when I sit in an uncomfortable chair for an extended period of time – just like a normal booty! PLEASE PLEASE PLEASE seek rhizotomy before surgery – it's worth it! Dr. Holubec gave me back my life for which I am forever grateful.

Updated 2003-11-09




NMS Solutions helped me immensely

Kevin - KevinDathome@comcast.net

I incurred two back injuries as a teenager some twenty-five years ago: first, I struck my tailbone on a rock falling down a ski hill; second, I misjudged a flip and landed flat on my back/sacrum, apparently injuring some ligaments. Though I was sore from these accidents and walked a little slow for a couple days I didn't seek medical care and thought I'd recovered.

In my 20's I started having low back pain and sacroiliac stability problems. I saw several doctors who failed to diagnose my problem correctly. I continued to have low back pain, sciatica, muscle spasm and neck strain sporadically throughout my 20's and 30's.

Finally a sports therapist I knew referred me to Dr. Kemper and Dr. Wooley (aka NMS Solutions) [see list of doctors and specialists in the USA].. Apparently a normal coccyx should have a potential range of motion of 50-90 degrees. Having slammed mine against a rock it had healed/stuck in a forward position and had zero range of motion. The treatments (manipulation) were uncomfortable and somewhat painful but the results were impressive. After the first treatment my back felt better and my pain less. After about the 5th treatment my sciatica disappeared for good. My forward flexibility has improved to where I can now touch the floor again (I was 18" away before). I've had probably 12 manipulations altogether, 2 under sedation. The coccyx treatments eliminated all my pain issues and the majority of my back problems.

The second part of my treatment has involved Prolotherapy injections for my sacroiliac and low back ligaments - these results have been equally impressive. My low back had always felt like a weak link and frequently something would slide out of place. My leg and butt muscles were chronically tight (apparently trying to hold things together) and my walking motion had become rigid. My symptoms included low back pain, joint instability and chronic tight hamstrings. As soon as the Prolotherapy induced healing kicked in: my pelvis and low back feet strong, my leg muscles finally relaxed and my walking motion has returned to normal. I've had 2 rounds of Prolotherapy treatments and will going for my 3rd next month.

I can recommend:

Best wishes for all

Kevin

Updated 2003-11-30




Protruding tailbone

Kim - kims@astribe.com

I am 42 and as long as I can remember my tailbone seems to protrude outward making sitting for long periods painful and having to reposition myself frequently. I can't sit on anything hard because the friction of my tailbone to the surface is painful. I can feel the bone and if I bend over you can actually see it protruding from the skin.

Anyone ever heard of such a problem or know what causes it and how to cure it?

Updated 2003-11-09




Temporary fix

Kim - welovegolf@aol.com

I have a story VERY similar to Karen including the approximate date she noticed her tailbone pain. I am debating the whole surgery thing myself but cannot seem to commit yet.

I wanted to mention that I was looking through a Harriet Carter catalog and they offer two types of seat cushions to help relieve stress on the coccyx. I noticed one of them said "As seen on TV". It's called a Seat Solution Orthopedic Seat Cushion. It runs about $15.00. Well, they just put an "As seen on TV" store in our mall so I went out last night and bought one. I used it to drive to work this morning and then at my desk in my office. So far it has helped a lot . . . enough to hold me over until I make the surgery decision. I know it will really help a lot on long car trips, too. So far, so good. I am going to give it a week and if it keeps working, I intend to get another to keep in the car and use at home. Right now, my primary need for it is at work where I sit for 11 hours a day.

I thought people with a similar condition might want to try this inexpensive, non-invasive option.

I would love to hear any feedback from anyone who buys one.

Thanks so much for providing us this site to compare our ailment.

Note from Jon Miles - see also the cushions page.

coccyx cushion

Updated 2003-11-09




Pregnant and receiving injections - update: not related to childbirth after all!

Kirsten - KirstenMcNeal@aol.com

Original posting, 2003-03-30:

I have suffered greatly since giving birth to my second child 15 months ago. My OB casually said I probably broke my tail bone and never brought it up again. My general practitioner was also very casual and wished me luck. Nobody here had any experience with this problem and it was so isolating.

Since I am 5 months pregnant now I am not comfortable having the surgery. I have been receiving cortisone shots and I have been seeing an osteopath for manipulations and massage. The first two shots wore off quickly and the pain never went entirely away. The third shot hurt so much for seven days, but one morning I woke up and realized that I had no pain for the first time in 15 months! It has only been three days now of relief and I have to be careful not to lean back or sit on hard surfaces, but I am really hopeful this will work.

I wonder if anyone has gone through labor and delivery with a fractured coccyx and what happened afterward. I am really nervous about going through the agony all over again.

Update, 2003-08-17:

I suffered greatly during my pregnancy and had to receive cortisone shots every few weeks to get through it. I elected for the c-section on August 7, and it went really well! I am happy to report that getting the baby out immediately helped! I think I can begin recovering with minimal help from the doctors and hopefully avoid surgery forever.

I found a great coccyx chair pad for $14.99 at Linens-N-Things - it is great in the car.

I am happy to share my c-section experience with anyone contemplating having one - it really was a positive experience.

Update, 2004-03-07:

My cortisone doctor retired, forcing me to get off of the injections and find alternative pain relief. I am relieved, in a way, because the shots themselves were brutal!

I have this great new pain specialist who swears the pain is from a tear in a ligament in the pelvic floor. The theory is that one side tore, caused the whole system to pivot, and the injured area is frozen up instead of being flexible. This makes sense since the x-rays and MRI showed no bone damage or dislocation.

So he is working my sacral/lumbar area - manipulations, massage, etc. And I do stretches each day. He tried internal 'work' and when he pushed on my tailbone, it did not hurt - I was shocked! The pain really is from the ligaments just off to the right. When he worked on that area I hit the ceiling!

I felt great the evening after that special treatment, but this morning I have that 'sitting on a rock' sort of pain. I have not given up on him, though, he has seen this a number of times and thinks it just takes time.

This is the most frustrating thing, isn't it?!

Update, 2005-03-27:




Pain for 5 years, now going to have tailbone removed

Kristy Chapman - Kpchapman1@aol.com

About 5 years ago I suddenly had pain when sitting and getting up from a sitting position. After a year of debating about it and dealing with it I finally went to see a doctor. He did some x-rays and was shocked to find my coccyx went straight in like it had been broken. I have no memory of falling or anything.

My options of curing this were slim and one of them included childbirth, they thought this might push the coccyx back out during delivery.

I went through about a year of PT and steroid injections only to find nothing worked. Just this past October 2002 I gave birth. Of course I thought that maybe there would be a chance in this fixing it. Well have once again been in severe pain.

After x-rays this past week (January 7th, 2002) they found it is still inward. I am now having my tailbone removed on January 29th. I am hoping this will take care of it.

Kristy Chapman

age 26

Updated 2003-01-12




Will I be able to cycle again?

Krys - krystoferstuck@hotmail.com

My question is this: I used to be an avid bicyclist. Riding was my main form of exercise. Obviously, I cannot sit on a bike seat, and I've completely missed this years season. Further more, I've put on a great deal of weight since I hurt my tail bone.

Are there any cyclists out there who have hurt themselves like this and recovered, or should I just sell my bike? I really miss riding a lot, and I could use the exercise.

Thank you.

Updated 2003-06-29




Excessive movie watching as cause of coccyx pain?

Lance - hognachi1@msn.com

Last week, I attended a local film festival and, trying to squeeze out the most value for the price of entry, saw 35 screenings in 9 days. Some days I would see as many as five movies. I noticed after one of the 5-movie days that my butt was sore at the point of the coccyx. I found this mildly amusing and even joked about it to friends as it was not really that uncomfortable.

Two days after the last of the movies, I still felt some minor soreness, but by the end of the day as I climbed into bed, the soreness had increased. I spent all night last night waking up with an acute stabbing pain in my coccyx every time I made a move in my sleep. Today I called into work sick and saw my regular physician, who diagnosed me with coccydynia. The pain is not constant, but triggers very acutely with even the most subtle movements if they somehow include the coccyx and its immediate surrounding tendons and muscles.

This is the strangest and most interfering pain I think I've experienced in my life. I've always taken a healthy musculoskeletal system for granted and I have a newfound respect and sympathy for people with chronic back problems. I've only been out of commission for twenty four hours and it's already driving me nuts. Especially frustrating is knowing I'm about to experience a burst of sharp pain every time I sneeze, cough or hiccup. I can walk around some, but I must do everything very slow and cautiously and with some flare-ups. I've already set up an acupuncture appointment for tomorrow and have great faith in this form of treatment.

Thank you for setting up this website. I especially appreciate your cautioning remarks at the top of the personal experiences section. As someone facing this for the first time for an extremely recent period, it's important to remember that promptly cured cases probably go underreported in a forum like this one. Anyway, I just wanted to share my own experience, because the apparent cause of my pain is a little unusual, but yet could easily happen to someone sitting in a reclined posture for extended periods of time.

Updated 2003-03-23




Persistent pain - going in for surgery

Lauren - SkilletJ316@yahoo.com

I am 14 years old, and I fractured my tailbone almost 2 years ago now. I've read the stories on here, and unlike a lot of people, I cannot remember the actual moment where I fractured it. I do remember, however, a throbbing pain in the very lowest part of my back. I joked about it for a while, and then when the pain persisted, I told my parents. They said that I had probably just bruised it, and that is should heal within a few weeks.

Well, a few weeks, and then a month or two went by, and the pain still had not ceased. I kept telling them how much it hurt me, so they took me to my doctor. She sent me to get an X-Ray, and when the results came back, they said that I had just bruised it, and that it would just have to heal on its own. Another 6 or 7 months went by with no difference in the pain amount, so my parents took me to get it X-Rayed again, this time at a Pediatric Orthopedic Doctor (I think they just wanted me to stop complaining). They X-Rayed it there, and when the doctor came in, she said “I can't believe they didn't catch this on the other X-Ray! Your tailbone is fractured, and is at a total 90 degree angle.”

She suggested a few options, mostly consisting of medicine, shots or physical therapy, but she briefly mentioned surgery as a very last resort. (she had never done a coccygectomy before). She suggested I first try medicine, so she had me on Vioxx for a month or two. When that made hardly any difference, I came in for a steroid shot. That was pretty painful, and didn't help any at all. I finally went back to her in mid-February, and we came to the conclusion that I should have the surgery. They are going to have to cut my tailbone off though, because its not completely broken. My date for my surgery is May 20th, so it's coming up soon, but not soon enough. I can't wait to not have all the discomfort of sitting down. It is especially painful in school. That's pretty much sitting down for almost 7 hours straight a day, which kills my back. I'm hoping this will relieve me of my pain.

Lauren

Updated 2003-05-04




The doctor refuses to give me any more medication

Laurie - lcantin@earthlink.net

I found your website today and was so excited to actually find that I was not alone.

I had a bad fall off my horse 6 months ago. I had never broken a bone or had any injury in my whole 37 years of life. This was a first. The pain from the fall was so intense that I passed out. I didn't manage to get to a doctor for 2 days in the mean time I was pretending that is was nothing, just a bad fall with bruises but the pain was so bad that I knew it had to be something worse.

After x-rays we found that I had fractured my sacrum all the way across from one side to the other. I was in shock and very scared. I love riding my horse it is my life. The thought of never riding again was enough to put me over the edge. I am a very active person so it has been hard to follow all of the doctors advice on activities and lifting heavy object etc. I'm sure I have not helped the healing process by pushing myself to the point of screaming pain.

It has been 6 months and I am still in pain. I have been on Vicodin since the beginning. I don't know how I would have gotten through all of this without it. As a Graphic designer I am sitting for several hours at a time this is very hard to do without the medication. Some days I try to see how long I can go without taking the medication, this does not last long. At one time the doctor was very slow in calling the refill in to the pharmacy that was the longest 2 days of my life. I couldn't go to work, I couldn't cook dinner I couldn't do anything without pain.

I have taken my medication today. I have 1 pill left and I do not think that the doctor will be giving me anymore medication. The nurse left me a very cold message on the phone telling me that the doctor would not be calling in the new prescription. He has recommended I get an MRI, my appointment is in 3 days. What will I do for those 3 days? I don't know. The anticipation of the pain to come is depressing. I have work to do, my brothers wedding, Christmas in 6 days and an 11 year old turning 12 on Christmas day. I want to be happy during the holiday, I'd like to enjoy everything but I've been through this before and I know it will not be a fun time.

Why would the doctor decide not to give me the medication? I can understand if I had a broken arm or some part of me that did not need to be used but the coccyx is used so much in our bodies movement. I don't think that anyone realizes the seriousness of the pain. It seems that every thing that I do revolves around using that stupid coccyx.

I exercise, I eat right, I never drink alcohol and I try to keep a positive attitude can I help it if I'm still hurting? I can't live on drugs but I do need something for the times when I just can't make it go away. Doesn't the doctor have a duty to make sure that I am not suffering for no reason? Because of the pain, I get depressed and I get angry. My family has suffered a great deal, I am not the same person I was 6 months ago. I no longer talk about it because I'm sure that everyone is sick of hearing about it. No one really seemed to care much anyway. If they don't see a "cast" then they don't see the pain. I've lost a good job and had to turn down another.

I work as a waitress now, that does not require sitting but after 4 hours on my feet my whole body is screaming. A slow limp starts and then the pain shoots down my left leg. I would take anything that would make that kind of pain go away.

I do not believe that a person in true pain can be addicted to pain medication. If the medication is the only thing that can give me back a semi-normal life then why can't people like me use it? How long is too long and what else should I do. I've tried several different massages, exercise and stretching. I've tried sleeping pills, mattress covers, special pillows, heat pads, baths, showers... I don't have the funds for a specialist.

How long could this pain last? Will it heal? Should I find a new doctor? I'm at the giving up stage and I don't know what else to do.

I would love to have one of those special saddle covers that Julie Rogers made. Thanks to her for giving out that information, now I just need to find a way to make one.

Sincerely,

Laurie

Updated 2003-12-21




Coccydynia and future children?

Leah - leahjordan@comcast.net

Hi. I gave birth to my son 14 months ago by emergency c-section (general anesthesia) and ended up with coccydynia. I had a hard time diagnosing it since I needed X-rays and couldn't have them while nursing my son. I am finally starting to take care of this and I am getting depressed about the whole thing. I am planning to try several methods for relief including lidaderm and cortisone.

However, my real question relates to a future pregnancy. I am really concerned about getting pregnant again. I don't want to make matters worse. Has anyone experienced pregnancy with coccydynia? I would really appreciate you sharing.

Thanks,

Leah

Updated 2003-07-06




Stationary bicycle caused the pain

Leslie

I injured my tailbone on a stationary bicycle on March 4, 2003. It was the one and only time I've ridden a stationary bicycle. I didn't realize it at the time, but the next day the pain was so bad I could not even sit down. It took 8 full weeks to heal the injury, and, even now, I am still just 95% recovered. But, nonetheless, through a self-administered treatment program, I can now ride my regular bicycle with only a little pain now and then (I'll never, ever, go near a stationary bicycle again).

The program:

I resumed bicycling with a saddle made by Specialized. It's called a "body geometry" saddle, and has a wedge-shaped cut-out area at the back of it. This saddle, in combination with padded cycling shorts, makes cycling possible.

I'm sending best wishes and all my love to all of the tailbone sufferers out there. I know the pain. And I thought I'd never heal. I thought I'd never be able to pursue my life's passion (long-distance bicycling) again.

Good luck to all.

Updated 2003-05-25




Scared for doctors appointment

Katie - lilathlete99@att.net

Original posting, 2003-05-11:

OK so I'm 13, and for the past few weeks I've had soo much pain when moving from a sitting to standing position, and also when I sit normally. I finally told my parents because the pain was so bad, and I now have a doctors appointment.

However, I'm very scared because I don't know what they're going to do. I'm also a little embarrassed saying that I'm going to the doctor for my butt. I really hope it's something that they can fix easily because I don't want to have to get surgery. I also don't want to have to put up with this pain for much longer.

I found this site and now I feel a little better knowing that other people are going through the same thing.

Update, 2003-05-18:

My name's Katie. I was the one who didn't have a name before.

I went to the doctors and now I have to go get x-rays, and then most likely go to an orthopedic doctor. Hopefully they'll find something they can fix and this pain will go away soon.




Coccyx removal

Linda

Original posting, 2003-03-23:

I've been suffering for 3 years with a dislocated/fractured coccyx (only recently discovered November 2002!). I won't even go into detail about the many misdiagnoses and wrong treatments during the past 3 years. Just say a wonderful X-ray technician actually listened to me and took the proper X-rays that showed my tailbone pointing inward at a 90% angle and greatly demineralized. After 3 years of constant inflammation I'm surprised I even had a tailbone left! I found a wonderful surgeon in Provo Utah and had it removed on 6 March 2003. Dr. Creig MacArthur is great and came highly recommended. He said my coccyx crumbled when he lifted it and there was a great deal of scar tissue in there due to inflammation over the past 3 years.

Surgery was as out patient, lasted about an hour and I was home that evening. Heavily drugged, but I rode home upright in the car. I have dissolvable sutures, the incision is in the cleft in my buttocks and not visible at all. The next day I was up and walking, but in a great deal of pain and stiffness. I wanted to move as much as possible to keep blood flow going to that area to increase healing. After 2 days I was going up and down stairs - very slowly and carefully. The surgery was quite painful for a couple of days but that diminished quickly.

I'm now 12 days post op and feeling very well. Am active and walking and moving a lot. I can sit for increasing periods of time with the use of a "tush-cush". I have a burning sensation in/around the tissues in that area due to nerves healing, but other than a little stiffness when I overdo it, I feel fine. I anticipate going back to work in about 3 weeks. Will work part time for a week or so before going back full time. I sit at a computer a good part of the day and will be up and moving frequently. I haven't driven a car yet but when riding in one, I have to move around frequently to get comfortable and not stress the area too much. I have been to restaurants and carry my tush-cush with me. So far so good.

I understand complete healing of tissues etc will take a few months, but I feel very well to have made the decision to have this surgery and lucky enough to find a wonderful surgeon who know's what he's doing. After reading some of these personal experiences I was terrified of going through with this. Due to the constant inflammation and demineralization of my tailbone I finally had no choice. I wish more people would share their good experiences.

Good luck to all of you and don't despair. I know I was severely depressed and miserable for a very long time. I'm an active person and kayak, hike, bike etc. My life was put on hold for 3 years and the medical community just couldn't seem to figure out what was wrong. MRIs and CT scans didn't go down low enough to even show the coccyx and I was told I needed to exercise and go to physical therapy! Imagine going to PT and having them try to make me exercise. I nearly screamed after the first attempt and told them NO WAY!! I'm hoping to get back to my health club and begin working out in another month and being back in my kayak by summer.

Good luck everyone and keep the faith.

Update, 2004-04-12:

I had surgery by Dr. Creig MacArthur in March 2003. Just wanted to let you know how I was doing after one year.

I was a bit dismayed to take so long to be pain free. However, I tend to overdo it at every opportunity so wasn't too surprised. I had polio as a child and have a 1/2" leg length discrepancy so that further added to the pulling and stress in that area. One year later I'm in great shape. Should be in my sea kayak this summer and I have several trips planned to Prince William Sound and elsewhere. Last July I was able to sit in my kayak for about 1.5 hours before I just HAD to get out. I used a small piece of foam cut for my behind. Wasn't very comfortable, but worked enough to get me out on the water a bit. This year I'll forego the foam. I'm also riding my bike without any trouble.

Here in Alaska people have somehow found out about my experience and I keep getting calls from strangers asking me about this procedure. Unfortunately there are absolutely NO physicians in this area who know anything about coccygectomies. Believe me, I've done my research and come up with a big fat ZERO! One surgeon who is supposed to be the new "gee whiz" kid on the block said if he did the surgery he'd want a colo-recal surgeon standing by in case he nicked my colon. That was certainly reassuring! He followed that by telling me he wanted to send my films to various docs around the country for confirmation. WOW! That's when I contacted my sister in Utah and asked her to do a poll at the hospital where she works. Found Creig MacArthur and he was a lifesaver. I find it amusing that he's seen at least one other person from Alaska that I've referred and performed a coccygectomy on her -- with great success. Small world out there isn't it?

It does get better folks. There is life after this malady. A word of caution though. I learned that due to the pain in the coccyx area and related ways I was sitting in order to try to be comfortable I was really stiffening up my spine etc. Took some serious exercising to retrain those muscles. The tailbone area felt fine, but my spine was somewhat misaligned and I had to work on my posture etc. Everything is fine now and life goes on.




Fell down the stairs

Lisa

20-odd years ago I had a motorbike accident during which I 'cracked' my coccyx (that's what the doctors said, anyway). Since then I had experienced numbness in my bum & base of spine area whenever I sat on a hard surface for any length of time. I ignored it - it didn't hurt.

3 years ago I slipped whilst walking down the stairs at home & bounced on my coccyx down about 3 steps before I came to rest. The pain of the fall was pretty bad, but I decided to go ahead & go to work anyway.... About 2 hours later I was back at home as I simply couldn't sit down.

I had the usual x-rays - no sign of anything. I was told it would be ok given time. It wasn't. After a period where it did actually improve, it then started to get steadily worse until it got to the stage it's at today.

I can't sit on a hard chair for more than about 5 minutes max before I start to feel pain. Soft chairs are better, but the pain is never very far away. I can drive for about 45 minutes on a good day, but have to ensure my car seat is pushed back as far as it will go but still allow me to depress the clutch. I can 'passenge' for about 10 minutes before I start to get pain. Long journeys result in a flare-up that can take up to 2 weeks to abate.

The very worst pain is felt when I go from sitting to standing, and I always have to work myself up to do this. It's obvious that the muscles are pulling on my coccyx, and it is a VERY strong shaft of pain which fortunately quickly subsides once I'm on my feet.

I have no pain when I'm lying down or when I'm standing, or going to the loo etc. Mine is purely a sitting thing. It also hurts if I cough or sneeze when I'm sitting.

Medical things I have tried to no avail:

However, having found this web site I realise that there's still hope. I'm going back to my doctor armed with some of the information I've got from here & shall ask for a dynamic x-ray & to be referred to an orthopedic specialist (preferably one off the list). I hope to give the cortisone injection a try. I don't think I suffer as much pain as many others (as I don't need to take painkillers all the time), so the likelihood of having my coccyx removed is nil (at the moment) but I may ask him to prescribe me some pain-killers I can take when I have to undertake any travelling. It would be nice to get out & about a bit more.......

Updated 2003-04-27




Roller blading spill

Lisa in San Francisco - lewasser@yahoo.com

I fell very hard yesterday on my tailbone while roller blading for the third time in my life. The impact with which I hit the pavement was startling. I have a high tolerance for pain in general, but the last 24 hours has proven to be semi-unbearable. I sit at work right now with a frozen bottle of water wedged between my back and my seat. The only position that feels comfortable is a twisted one.

I am a bit scared after reading the experiences on this site. It does seem like this is no quick healing injury. I just turned 40, and still have hopes of giving birth in the next year or two (I have not had a child as of yet) Of all of the obstacles that I have fathomed in my mind, this was not one of them.

I would appreciate any advice from people who have learned from injuries such as this. My instinct is telling me to just rest, but is there anything else that I could do at this early stage?

Thank you so much

Updated 2003-05-18




Can anyone recommend a doctor in the Seattle or Bellevue area?

Lori

My tailbone started hurting when I started taking classes in the evening along with sitting at a computer all day. I went to a doctor after suffering for 1 year, but after taking an x-ray decided it was just from sitting. I now have a table at work that I can stand at part of the day and I found sitting on a hard chair helps, but I'm still have the pain.

It seems to be improving lately. Sometimes my tailbone moves and then really hurts, so I still think there might be something wrong. Can anyone recommend a doctor in the Seattle or Bellevue area?

 

Updated 2003-02-23




Coccyx pain without trauma

Mada - drgacmada@yahoo.com

About a month ago I began having pain. All I was doing was sitting working on the computer. I thought maybe I was sitting too much and that the pain would go away. It has not.

My coccyx does not curve as seen on most diagrams. When the end bone is palpated, it is very sore like it is bruised. I have not fallen or in any way caused any trauma to the area. I am totally baffled as to what may have caused the soreness. When I sit on a couch, I must sit to one side or the other.

Arthritis runs in my family. I am 39 and the only symptom of arthritis I have is an occasional twinge in a couple of my fingers. Other than that I'm on the go. I am curious what would cause such a sudden onset of pain like this.

Any ideas?

Updated 2003-08-17




Bad fall and terrible 'bruised' feeling

Maggie

I slipped not once, but twice on the ice this winter on my farm. I have been having terrible pain around my tailbone since the second fall. It feels like an intense deep bruise. Very painful. I can't sit on the floor or on a hard chair without terrible pain.

I've had cortisone shots for my lower back (facet joint injury), but this intuitively feels unrelated. I have radial pain from my spine base out, and if I put any pressure on my tailbone, it is very painful. I am so afraid to get it checked because of the ordeal with my other back problems, but it seems to be getting worse, not better.

Maggie

Updated 2003-05-11




Looking for doctors in Florida

Malinda - malinda.ramirez@mindspring.com

Hello

My name is Malinda and I live in Florida I''m looking for a doctor that treats the coccyx, does anyone know any?

Please email me at (malinda.ramirez@mindspring.com)

Thanks!

[See list of doctors and other specialists]

Updated 2003-06-29




It works!

Manuel

Surprising as it may be, it works! Well, it worked for me (in a matter of two weeks, after one year of coccyx pain) and it has worked for many others. So, it may work for you as well! I'm talking about Prof. Sarno's approach. At least three people have already mentioned it on this site, but probably you have not paid enough attention to them because the whole idea is hard to believe. It is specially difficult to believe that it applies to oneself. OK, as a scientist I think that being skeptic is healthy. But I also think that it is good to keep an open mind, in particular for dealing with difficult problems. So, unless you and your doctors are 101% sure that your pain is caused by a serious structural problem, I advise you to give Sarno's treatment a try. You have nothing to loose, for it is conservative, simple and cheap!

According to Sarno's diagnosis, coccyx pain, back pain, sciatica, knee pain, RSI, etc. are in most of the cases produced by our subconscious mind (or autonomous nervous system, if you like). This doesn't mean at all that you are imagining the pain: the pain is real and can be excruciating. Actually, there is something physical going on with your coccyx, but the ultimate responsible is the brain. The great thing about it is that your conscious mind can reverse the problem, which means that you can be cured following a psychological approach. In many cases, this reduces to accepting and understanding the mind-body diagnosis.

Personally, I recommend Fred Amir's book, Rapid Recovery from Back and Neck Pain (here, substitute "back" or "neck" by "tailbone").

Good luck!

Manuel

See also Psychological treatments for pain, and contributions from Frederick Darrah, Todd and Patrice

Updated 2003-11-23




Could this pain be caused by my coccyx?

Marcel - marcel.blais@sympatico.ca

I have low back pain going to my legs and bottom of my feet. It feels like tearing, pulling, crushing, seems like every joint is attacked. My fingers are hurting. When I press on my tail bone, it really hurts. I can't sleep at night or sit down for too long.

Do you think it could be my coccyx?

Updated 2003-07-06




Any doctors in London or surrounding areas?

Marian - p.harris30@ntlworld.com

Hi, my name is Marian and I am 39 years old and live in Kent, just outside London. I had a car crash in March this year and suffered a fractured pelvis. Since then I have had coccyx pain and have been going to and from the hospital with not much help or sympathy. I had an MRI scan which showed coccyx inflammation, but was told that this would eventually go. In the meantime, the consultant referred me for more physio (which seems to be making it worse) and has arranged for me to see the pain clinic at the hospital. He told me that it wasn't the sort of thing they operated on (this was before I discovered Jon's page) and that time will heal.

I don't really want to go down the road of having injections etc but am also scared of having surgery.

Is there anybody who has had surgery or treatment from a doctor in the London and surrounding areas that I could maybe contact?

Anything info would be great as this pain is just making my life a misery

Thanks

Marian

Updated 2003-07-19




Broke my coccyx 3 months ago. I can't take the pain anymore!!

Marina - mburgess@elp.rr.com

Original posting, 2003-06-15:

Three months ago I basically impelled myself on a wooden chair when I lost my footing and came down on my tailbone HARD!!! It was so weird the way I fell I blacked out for a second or two. The pain was so bad for so long. My legs and body got so sore and tired from standing so long cause it hurt to sit or even lay down.

About two weeks ago I broke down and told my husband I need to see someone NOW!!! I can't eat, and when I do I just throw up, I'm losing weight and I can't sleep. I feel like I'm going nuts!! My husband got me into a doctor the next day, the x-ray that was taken was pretty grapy, but you could see the broken coccyx. The next day I want for an MRI, that showed impact trauma to L4-5 mild facet arthrosis and L5-S1 minimal annular bulging, and there is sharp angulations of the spine at the mid coccyx with a small amount of precoccyx fluid. (I started writing this 2 hours ago I keep having to get up from the pain.)

This past Tuesday I went in for a injection or pain bloke, I got very little relief. The pain is back and even worse then before. When I found this site and realized I'm not going nuts. I know I can't give up hope that this pain will go away. I'm only 33, and my husband tells me he wants his wife back, he has gone through three mayor back surgeries in the past three years, so he knows what I'm going through, I know his scared for me.

I don't want this to take anymore of my life away!!!! The pain pills don't work they just make me feel stupid, I go as long as I can before taking one, which isn't very long.

Is there any hope out there PLEASE LET ME KNOW!

Thank you, for letting me unload

Marina

Update, 2003-07-06:

It's July 1st, The pain pill's are really messing my stomach up. The pain got so bad on Saturday evening that my husband had to call the doctor. (I had moved wrong in bed Friday night) The doctor said to take two pills (vicodin) every three hours and if that didn't work I should go to the EM room for a pain shot. I took the pills, Sunday evening I started vomiting to the point it was green vile. This went on for hours. My husband called the doctor and he said to call my regular doctor. That wasn't much help, he wanted me to stop taking the pain meds! And that I needed to have the surgery done ASAP because the pain med's are tearing my stomach up. The doctor did put me on Promethazine for the vomiting, and I'm only taking one pain pill every 4 to 6 hours with the vomiting pill and a piece of bread. Today it's going on five day's that all I've ate is four slices of bread. I don't know how much longer my body can take this. My body hurts so bad. (I know a lot of it is from vomiting). I don't have a surgery date yet, The doctor wants me to have a block at the coccyx area to make sure that it's my coccyx causing the pain???? before surgery. That's being done Monday.

Has anyone else had problems with pain meds like this? If so, HOW DO YOU DEAL WITH IT?

Update, 2003-07-03:

Today is July 7th, tomorrow I go in for surgery to have my coccyx removed. The day after I last posted, I received a call from my surgeons nurse with the surgery date, July 8th. I also did not have to go in for the pre surgery injection today, instead I registered at the hospital. I'm going to stay over night. I'm starting to get nerves, but I am so looking forward to doing the things I use to do.

Update, 2003-07-13:

I had the surgery on the 8th. It wasn't anything I thought it would be. I was able to walk out of the hospital six hours after surgery. From the moment I woke up in recovery I could feel the difference, the pain was gone!! Instead of staples like I was told I would have, glue was used to close the top layer of skin.

Stitches would have been better I think. Tylenol took care of the pain for me, No more vicodin!!!!!. I am eating and sleeping once again. It was weird at the hospital cause no one had seen this kind of surgery before and everyone wanted to have a look at my bum??? and they did before I was fully awake. After that I was asked. There wasn't much to see cause it was packed and covered, I didn't much care and flashed away.

I did start having some pain at the incision site yesterday, but I believe it's from the glue not working and the incision has opened a little. My husband cleaned it really well, and it stopped throbbing. I'm not wearing underwear though it really bothers me, but wearing long skirts and letting it air dry works! I can not believe how different I feel, how good I feel. Don't get me wrong there is still pain from the surgery and soreness, but it's the kind of pain you can deal with and take care of with a couple of Tylenols.

My surgeon [Dr Misenhimer, Texas - see list of doctors] knew what he was doing, compared to many other stories I have read, I was ready for the worst. Having the right doctor makes all the difference in the world! If I could go back and change anything now, I would have insisted I be taken to the hospital the day I impelled myself. I would not have had to suffer for as long as I did, and could have prevented any further damage and unnecessary pain. For those of you getting cortisone injections think twice PLEASE, and asked many many questions before doing it, you do not have to take your doctors word that it will help, in most cases as I've found out it's their way to shut you up!

My surgeon was so understanding the moment he walked in the room, He told me the kind of pain I was having, I didn't have to explain. It was as though he knew how I was hurting from a personal point, and I was in surgery the following week!

There is hope so don't give up!!

Update, 2003-08-10:

Today is August 7th, tomorrow I will be four weeks post-op. I was told at my ten day wound check I was to do nothing at all but walk till my next appointment, which is at the end of this month. I have been doing more than I should.

I have had a few pumps along the road to recovery. My husband and I were sleeping really good one night when my husband rolled over and his knee met my incision and the tip of where my coccyx was removed - OUCH!. Then about a week ago the top of my incision came open.

Since having the surgery I've only taken three vicodin, and only because of the pain of being kneed. Other then that my recovery has been really good, I have put back on most of the weight I had lost. I'm able to once again lay on my back at night to sleep, but best of all my children have their mother back.

My eldest daughter and her husband are expecting there first child in January. It feels so good to be able to go with my daughter to her doctor appointments and other things now, I was scared I wouldn't even be able to hold my grandchild. We have two younger children 10 and 7 who basically didn't have there mom all summer. So I've had a lot of catching up to do with them.

To all who are still going through this I wish you the very best.

Marina




Not decided yet

Mark - mrawlins@elp.rr.com

I have not decided yet too have this surgery yet, it is still in the planning stage. I have fully enjoyed your website, and have been reading through the personal results. However, if I may present a question that I am concerned about. My doctor presented questions about my bowel movements and urinating experience as well as my intimate relationships with my wife.

I was wondering if there were any side affects with this type of surgery that would effect this? Also, controlling the movements of your bowels, is also a concern after the surgery is complete?

Thank you for receiving these questions. My wife and I have concerns for these areas before making a decision.

Mark

Note from Jon Miles:

Coccyx problems (without surgery) can cause problems with bowel movements or sexual intercourse in some people. No permanent problems in these areas as a result of surgery have been reported in the medical papers covering more than 200 operations. While you are recovering from surgery, you should avoid becoming constipated because that could make bowel movements painful.

If you are thinking of surgery, make sure of two things: that you are a good candidate for surgery, and that your surgeon has plenty of experience and success with this operation.. See the page on coccygectomy for more details.

Updated 2003-08-10




Coccyx pain and incontinence

Mary Kay - ScottMaryKay@aol.com

I had a baby 11 months ago and have had fairly severe urinary incontinence ever since. My coccyx pain did not begin immediately- but a month or so after. I assumed it was related to all the sitting and nursing.

My urologist is recommending a procedure to put in a bladder sling. Before I do this however, I am wondering if anyone knows if these two problems could be related in any way. My urologist says no but.....

Could you please e-mail me with any suggestions.

Thanks-

Mary Kay

Updated 2003-05-11




I backed into a water heater

Matt - combusto@optonline.net

I am a male of 25 years of age. I have always been very good on my feet. I ran track in high school, did the hurtles, and sprinted in an above average class.

I'm never usually clumsy but I was moving one of my saws, weighing 60 pounds or so, backing up when BAM!!! I immediately dropped the saw and closed my eyes tight to bear the pain. It was like a bolt of hot lightning jolting up my spine. I ran to the bathroom to see what the hell I did to myself. I only received a minor cut but the force of the impact left a sizeable lump. I went back to see what I hit and to my amazement, I backed up into a hose spigot protruding from my water heater.

Again, I've made it through life so far with some scratches and such, but never broke or fractured anything! It's been two weeks or so and I now know I need to see a doctor. I say my prayers every night not to have to live with this pain for the rest of my life.

I am an athlete who may have just met a hurdle to big to overcome! I'll say a prayer for everyone, and hope someone does for me.

Updated 2003-01-05




Jumping injury

Maurice - maurice.kahlil.robins@us.army.mil

I am a soldier currently in Iraq. I am also airborne. Before I went to Iraq we had a jump to do to stay current. I hit the ground really hard and it hurt bad. The next morning I went to the doctor to see what the problem was and they did X-Rays. The doctor said I had a fractured coccyx. Well, I was given naproxyn and percaset, a doughnut then put on a plane to war.

I am still here but now I am having problems with my balance every once in a while my ear constantly hurts along with my head. At least twice a day I have to hold my noise to unclog my ears. And about 5 days ago I just lost my balance and fell with a severe headache, chest pains, shortness of breath, severe ear ache, something draining out of my ear and temporary paralysis as he said. I ask the doctor what could cause this problem and he hasn't told me anything yet.

I am really wondering could all this be from a fractured coccyx or is there more going on with me. Could someone help me?

Updated 2003-11-30




Pregnancy and childbirth led to coccyx pain

Melissa - mcwilton@shaw.ca

I have been suffering from coccyx pain for about two years. In June 2001 I gave birth to a baby boy and my pregnancy and childbirth has left me with this pain. Ironic, because I have a mild scoliosis and had injured my back falling off my horse when I was younger. I had had some pain from this about 10 years ago in my lower back, but nothing of significance since then. I was sure I would experience a lot of back pain while pregnant, but was fortunate enough not to have any at all. For about the last two months of my pregnancy I found it difficult to sit on anything but a very well padded chair, but I thought that was simply part of being pregnant and figured it would go away after I gave birth.

After I delivered my baby (very healthy beautiful boy – the positive in all this), the doctor discovered I had a blood clot in my cervix. They asked me if I wanted to be given a general anesthetic before they removed it, but I didn't want to be put out right after I had my son so I said no. Needless to say removing it was very painful, and I believe it has contributed to some of my problems.

For about 5 weeks after I had Jacob I was fine (tired, sore etc. but I could sit on wood!!). One day I was sitting in a lawn chair and discovered that I could no longer sit down. I have not been able to do so without pain since then.

I had an x-ray done of my tailbone area to make sure I had not broken anything – it was fine.

I was referred to a physiotherapist who specializes in pelvic floor trauma. She said that she had seen many cases like mine and felt that we would be able to reverse the damage. She says that my pelvic floor muscles are in spasm and are pulling all the other muscles out of place. Also my sacrum is twisted out of place. I have been seeing her ever since, I think she is as perplexed as I am….

I went to another physio briefly after about 6 months and she told me that I should wear a belt to support my SI joints as they have not recovered from the pregnancy. I wore that for about 6 weeks and this was the point along my journey where I discovered that I needed to listen to my body, not only to the people who were treating me. After the first few days of wearing the belt I started having intense pain up my back (before this it had only been in the tailbone area). I continued to wear the belt because I had been told that it would help even thought my body was screaming that it was not a good thing for me at the time. By the end of this experiment I was unable to do much more in a day than lie on the couch – not a good thing when my son was starting to crawl about. Finally I removed the belt and went back to my first PT.

I started going to massage therapy and acupuncture once a week. The massage felt wonderful, but only relieved the muscle tension for a few hours then it would return. The acupuncture was VERY painful and also only relieved the muscle tension for a little while. I did that for about 4 months and then stopped. Still a little slow in listening to my body…

I started seeing a pain doctor who said that he thought if we could help my sleep then I may be able to heal faster. He gave me Neurontin which I took for 2 months with no big difference to my life, so I stopped taking it. I also have tried various anti-inflammatories with no real success.

I had an MRI done to make sure there was nothing else going on that we were missing. It came back fine. The doctor who read my MRI does fluoroscopy treatments at the hospital and said that I could be referred to see him to see if he could help. I had to wait 2 months to get in to see him. The shot actually helped quite a bit. I still had a lot of pain when sitting down, but the rest of my back stopped hurting almost immediately. That was wonderful!! This lasted for 3 weeks then the benefits wore off. I called to see if I could get back in and they said that I had to get another referral from my doctor. That was the middle of November, it is now the beginning of January, and I am still waiting to get my appointment, hopefully it is not another 2 months wait after it is booked.

I went to see another doctor who gave me a cortisone injection. This one hurt like you could not believe and did not give any real benefits. I am going to call him and see if there are any other solutions. He at least said I could call him and get right back in to see him without the long wait.

Two weeks ago I had my regular PT session, I have no idea what she did that was different, but I actually felt quite a bit of relief from that session. Of course when I went to book my next appointment she was full until the middle of February. Normally I go every 2 weeks.

Last week I went for a cranial sacral treatment. It was totally unlike anything I have done so far. She managed in her treatment to put my sacrum back where it should go. Of course, muscle memory did not let it stay there, but it was interesting the way she moved my body around. After this treatment I was exhausted. All of my muscles were so tired I could barely move for about 4 days after. Christmas was the day after which probably did not help with my resting! I am going back to see her next week and I am very interested to see if this therapy will be of any help to me.

I have started trying to deal with the emotional ramifications from this. I have found it increasingly hard to cope with this pain and still have the time and energy to care for my son and continue with my work (I teach pre-school kids who come from abused and neglected homes). I went to my doctor and was prescribed some anti-depressants to help cope.

If anyone has any ideas or suggestions I would appreciate any advice.

Melissa

Updated 2003-01-05




Removal of pilonidal cyst caused scar tissue and pain

Melissa - MelissaMCoble@aol.com

I had a pilonidal cyst removed in Jan 17 2003, and have been suffering from pain since. I kept visiting my general surgeon to only hear him say that the incision looked good and he saw no reason for this pain. I have been sent to a pain clinic and was injected with numbing medicine which only made me worse. I have had blood work to check for reoccurrence and that was fine and then was finally sent to a neurologist who did a MRI and found A LOT of scar tissue that goes all the way to the tailbone. She said going in and cleaning all that out will only create more. So now I am being sent to a pain clinic once again.

I have read that some people can stand and walk normal but I can't, if I stand along time or walk a long ways I swell and the pain gets worse, and of course sitting is definitely a chore.

I wish my doctor had warned me of this, because if he had I would have never had it done. My cyst only flared up once every two or three months, and as soon as I noticed tenderness I would call and get on antibiotics right away. Now I suffer daily and I see no relief in sight.

Any suggestions as to what I should do next?

Updated 2003-06-29




Fell off Water Slide.....OUCH!!!!!!

Michelle - joakley@carolina.rr.com

Original posting, 2003-05-11:

Father's Day weekend 2002 I fell off a water slide, more like slid off a slide very ungraceful like and landed directly on my tailbone. The drop from the end of the slide to the pool of water was about 6-7 feet. It looked easy enough but when I landed it felt like I hit concrete. Ever since, my tailbone has hurt!!!! X-ray, CT scan, MRI, Nuclear bone scan all negative. I also had a study done to test the nerves in my left leg because of numbness that has come back in my left foot. Chiropractic didn't help. . . . . they thought I was nuts. My internal med doctor who is kind enough to listen and order tests gave me some pills, ultracet, and said . . nothing I can do for ya. More or less: no one has died from a painful coccyx (yet).

Nothing has helped. Rest. Advil. Left over Demerol from my c-section 2001. Ice. Heat. HELP!!

I have committed to myself to a healthy lifestyle this year. I turned 38 this past February. I have lost 40 pound, 20 inches and am half way to my goal.

Not to sound corny, but as I lose weight, my butt is getting skinnier and my coccyx is losing any padding it did have. It has NOT helped in the pain. I am able to do water aerobics and light weight lifting. I cannot do many of the weight machines. . . you have to sit. Walking distances hurts. Bike riding. . . NO WAY!!! I would love to ride. This is a goal I have, to ride again.

Okay. . . blah, blah . . . . . After trying chiropractic, steroid injection, rest, drugs, time, I am scheduled for surgery June 30 2003!! Dr. Dickerson here in Charlotte NC. I am depressed I must wait so long till June (my choice) due to family issues, etc. but I am excited that there is a light at the end of this tunnel. I truly empathize with everyone here on the site!! Good luck to everyone. . . .

Update, 2003-07-06:

On June 30th I had a coccygectomy done by Dr. Dickerson here in North Carolina. he found that my coccyx was "hanging on by a thread". it was capable of floating in all directions, especially up and back, he said. NO WONDER I HAVE BEEN IN PAIN FOR A YEAR!!!!!!!!  All my tests, MRI, CT scan, nuclear bone scan, x-ray were all NEGATIVE. All my previous doctors said that I had to live with the pain, cause nothing was wrong with me. My surgeon was the only one who believed that I hurt and was willing to do something to help me. Mind you I did fall 7 feet one year ago into a pool of water, instantly being in pain........ go figure that my coccyx has been poking me literally all that time.

Well, I am 3 days post coccygectomy and doing great. My surgery was June 30th at 7 AM and lasted about 30 minutes. Uneventful, no blood loss. I did get sick as a dog from the pain medication given to me in the recovery room. It was dilaudid given intravenously. Oh, I puked for 12 hours! None of the nausea medications helped......aarrgghhhhhh!!!!!! I more or less had to wait for it to wear off. 12 LONG hours. I went home at 4 PM, quit vomiting at 8 PM.

Anyhow, my incision is about 2 1/2 inches long, in the crack of my behind. I am able to easily walk around the house and do steps. The pain I had before the surgery is gone. Only the incision hurts now. My hips and ribs are sore from lying in bed because sitting is hard!!!!! Forget sitting on a soft surface. I am better off on a hard chair. I am taking percocet every 4 hours. I was on no pain medications before surgery.

I am allowed to shower come Saturday, can't wait. I am not allowed to lift for 3 weeks (minimum). This is hard since I have a toddler running wild. My two older kids are helping.

Well, can't think of anything else. I am afraid to say this is going much easier than I ever thought possible. Keep your fingers crossed.

I have an appointment next week to get stitches out. I will post after that....ouchie!!!

Update 2003-07-13:

I finally showered!! yahooooo I am now allowed to have the dressing off my hiney. I thought the stitches might rub on my underwear but they are fine. I don't mean to get graphic but the stitches are prickly. I go Wed to get them out (hopefully).

I fatigue easily. I am taking percocet 1 tablet every 4 hours. I have to tell myself to slow down. I think I tire for one cause I either stand or lay down. Sitting pulls on the stitches. Still I am able to sit in a hard wooden chair sorta leaning forward and I have no stabbing pain like before. To go to standing is fine as long as I don't spread my legs to far, which pulls on the incision.

I am really surprised my surgical site is not very bruised. My IV site on my arm looks much worse than my butt!! lol !!

Dr Dickerson gives an average of 3 months before you feel well into recovery. Some people feel great 3 weeks post op while others it takes a year. I am of course hoping for the 3 month-ish range.

I need ideas on how not to let the messy house get to me...... I do not want my older kids (13 and 10 1/2) to spend their summer cleaning. My toddler age 20 months is running wild like before.

Lets see, today is day 13 post coccygectomy. I have taken no pain medication, although today I might take a couple Advil, for 3 days. I had said that stabbing ripping pain upon sitting and going to stand was gone.......well....IT STILL IS !!!!! I guess I am still in shock that I had this bone literally stabbing me.

I can sit in a hard chair for meals or to sit with the kids. Soft chairs, including car seats are uncomfortable. They push up into the incisional area. My incision feels thick, like there is pressure there. No stabbing. I know I keep saying that but those of you who all have this KNOW what I mean!!

Had my stitches out day #10. It did NOT hurt. My stitches were the old fashion nylon gut kind. Incision is completely unnoticeable. If I touch it with my fingers, it feels sorta numb. This is all normal healing.

Day 11 was a big day. Okay, I have not seen this topic brought up but what the heck. My husband and I had sex. Yes, it was MY idea. My husband said jokingly pre-op that he won't approach me for 2 months. I wasn't able to lay flat on my back so a bedpillow propped a little to keep the bum from pushing on the bed was fine. Other positions were fine. I won't get specific. Ladies, I do not know if I am the normal ( I hope I am) but I was scared that my butt incision would hurt (referred pain) into the perineal (vaginal) area. IT DID NOT. I was reassured by my surgeon that coccygectomies do not effect sexual function, bladder or bowels. I thought I might have been sore the next day after "IT" but I wasn't.

Since I have had my stitches out, I have made a few short... like 10 minutes... car trips. I actually went to the grocery store, was there 35 minutes, had them load my car, came home, had my kids unload. I was TIRED after that one.

I continue NOT to lift. No lifting more than 10 pounds for 3 weeks post-op. My toddler is 30 pounds so this is fun. Luckily my older kids are wonderful helpers. No tub bathing or swimming pools till 3 weeks post-op also. I am allowed to return to water aerobics then (gently) but I am not allowed to return to weight lifting till 8 weeks post-op (this kind of lifting is with weight machines and barbells). Oh yea, no horseback riding or motorcycle riding for ? weeks. I didn't catch what he said cause I don't do either of those. The thought of straddling a horse.......ouch.

Well, that is my life in a nutshell. I hope this is helpful to some. I am THRILLED with my recovery. My goals are to continue to slowly heal over the next 3-6 months. ( I know it may take a year). I would love to be riding my bike (and taking spinning classes at the club) by Spring. I want to try power yoga but I have never been able to sit........ maybe in the near future!

Take care all. Please feel free to email me with questions or whatnot.

Update, 2003-08-03:

Hi everyone,

I continue to heal every day. The butt pain I feel is post op pain in my coccyx area, totally different than pre-op stabbing pain. This is felt only when I sit on a soft seat like a couch or car seat. They tend to push up on the bum cheeks, putting pressure on the surgical site. Does that make sense?

My incision has a small hole, the size of a pencil eraser head (maybe smaller). Not deep. I went to the doctor immediately and he feels I may have just popped open a stitch or maybe an infection was starting. Anyhow, I took antibiotics for 5 days. I never had any redness or drainage or excessive tenderness or fever. It looks to be healing from the inside out, which is what it needs to do.

Activity is slow. Yesterday I started my exercise routine. Mild stretching, sit-ups on my palates ball, a few lower back strengthening exercises and 3# weight dumbbell arm exercises. I feel very weak and stiff in general. I went into this surgery pretty well "fit". I do not know how much harder it would be on someone who did not exercise prop or have a semi healthy life style. I admit, I have eaten every bite of food my friends have brought to my family.....most importantly, the desserts. I have to get back on the healthy eating plan....no more blueberry cobbler.

Overall I think I am doing very well. I do not think I could do a sit down job due to my butt being sore. I am a stay at home mom and work in a cardiologist office as needed. I am an RN. I am not sure how long "recovery" is before you can sit at a desk all day. I must say to have the ability to get up and down when I want and as much as I want is a life saver.

Nothing really exciting to say. I think that is exciting in itself...... a boring post op update. As they say, "No news is good news."

Take care all. To those who are playing with the idea of surgery. I know you read about BAD cases. There are GOOD ones too. Everyone is unique and must decide for themselves what will be best. I thank God that my pain is gone. I pray that I continue to heal well. All in time.

Update, 2003-08-31:

I am 8 weeks post coccygectomy and doing great. When this is posted I should be 9 weeks.

I saw my surgeon for my final visit this past week. He is very happy with my progress and expects me to recover 100%. Again...... recovery can take up to a year but he (and me) expect recovery to be in the 3-4 month range. He reassured me that when immediate relief is felt after surgery that recovery is quicker. Literally it was like removing the knife that was stabbing/ripping me with sitting and standing. I wonder about the scar tissue in there. When I am tired by the end of the day my old coccyx area feels bruised, achey, sore. When I am "overdoing it" since I am now at my regular fast forward speed with 3 kids, house, hubby, part-time job..... I again feel achey and sore in my butt. This scar tissue will take time to settle down.

I say I am 80% recovered. Dr. Dickerson said the last 20% will be slower. I am able to carry out my daily life like a normal person again. Today I even went to our local Amusement Park for 6 hours (in 86 degree heat).

I was able to sit when I wanted...where I wanted...without thinking once....."oh my gosh, this is gonna kill." Better yet, the ride there and back was fine. I have found cars to be the most uncomfortable. Being the driver is the hardest because you can't scootch around as much to shift your butt.

While talking with my surgeon I asked about why aren't more doctors "up" on this surgery? My internal med doctor thought I was practising voodoo witchcraft when I told him I was getting my tailbone removed. My surgeon laughed and said...."don't you know I am the crazy doctor doing crazy surgery on crazy people" he then added "until it is them with the pain." OH SO TRUE.

Well, I guess that is it. 8 weeks out feeling fine. I rejoin the gym Sept 1st as this is when I am allowed to restart my weight lifting, etc.

I read new postings and really feel for these people. Like when you been there, done that and never want to go back.

I guess I won't be posting again or at least not for a while. Thanks again Jon for a great site. If anyone wants to email me, feel free. Sometimes having someone to bounce off of who has been there helps.

P.S. I have given up all Amusement Park rides (except the Merry-go-round and all water park rides (except the lazy river) REMEMBER....a waterslide is what started this whole mess. I will have to rely on my older kids to take the toddler on the "big rides" when she is older...

hahahahahahahaha. My hubby hates most rides so he's no help.....lol !!!!

Update, 2003-09-21:

How long does your "ex-coccyx site" feel thick, achey, sore? I know it hasn't even been quite three months, recovery can take a year. I still feel 80 % better.

I am doing water aerobics and/or Yoga 4 times a week. The water aerobics is much less stressful that the Yoga. I thought Yoga was a bunch of sitting with chanting.....WRONG!!!! It is called Yo-fit-ga and it is tough. Fortunately I am flexible to begin with but my strength is poor, especially in my hips, low back and thighs, due to poor sitting/pain prior to my surgery for a year. It is really helping. One exercise/stretch I can not do it to sit on the floor while you tuck your legs up to your chest and curl your arms around them. Like you are curled up in a ball. Then you slowly let yourself roll back, onto your coccyx then low back, then entire back. The hard wooden floor is just a bit much yet. This exercise takes strength to not let your body roll too fast. I skip it altogether.

Is it also normal to have one inner butt cheek ache one day and the other another day? I assume this is all part of healing and getting into shape again. My incision is doing great. What a place to have a scar. lol !!!! I guess I want to be 100% all the time already. I am not taking any medicine, not even an advil, no need to.

Update, 2003-11-23:

I am 5 months post op now and continue to do great. I must say that this surgery was a life saver. For me, it was the answer to my pain, stopping it the minute the bone was removed. I am fortunate to have a wonderful surgeon, and simply a coccyx that was injured (no low back/hip/disc problems)

My incision is getting better. At times it feels "thick" and "numb". A mighty weird place to have that sensation... lol !!! Sitting is NO problem. To stand up is easy. Car seats still at times are uncomfortable. I keep my old trusty butt donut in the car. It is not "coccyx pain" I feel but "incisional aches/numbness", when I have to sit strapped in a car for longer than 1 1/2 hours or so. Before the surgery, just to try to sit for 1 minute in a car KILLED!!! Even on a "bad day" which is nothing, there is no need for advil or tylenol.

I have not tried bike riding yet...... I am sorta scared. Maybe this Spring. I have found some yoga moves where you are positioned on your "tailbone" I can not do yet. It aches plus my gut muscles are weak. Sit ups, here I come.

Enough of my boring story..... I never meant to be the longest story on Jon's site.

Good luck to everyone.

Update, 2004-05-23:

Hello everyone,

It has now been 11 months since my surgery. It has been 6 months since my last post. The last 6 months have been uneventful. My scar was settled down 80% of the time. It still feels "thick... numb like" at times. Sitting for long periods most definitely can "flare" it up. A "flare" up consists of following sitting for long periods like a 5 hour car trip or sitting on a metal horrible chair (at my daughter's sports banquet) for 2 1/2 hours. The lowest part of my scar which is where the tip of coccyx would have been aches/burns. It is not bad pain. I have taken advil for it.

Recently, about a month ago, I went to Dr Dickerson because I was having a mild constant pain just to the right side or my scar. I was scared because I got myself worked up thinking it was going to progress. We all know that "PAIN." He was not concerned at all and said it is common for this to happen. It may be scar tissue, it may be simply an inflamed area from daily wear and tear. He poked around my scar and found the most sore area and injected it with steroids. The shot was quick and easy but burned when he was done. The burning went away in 2 minutes. The injection really helped. In about 5-7 days after, the mild pain was less and now I only notice it now and again. I asked if it was something I did....no. I asked if it was from my 30 pound weight gain since late summer...no. I thought the excess weight puts more pressure on your butt..right?? I asked if it was from the depression I have been in ( my mother had been very ill and died New Years Day)..he said no. Mind you, from previous doctors I felt this "pain" was in my head so I thought maybe being depressed was making me "feel" more pain. I do feel my poor sleep and down mood does play a role in feeling "pain." Does this make sense? Maybe we can start a "How not to eat and gain weight while clinically depressed" support group. Okay, I am kidding on that but unfortunately all this pain, whether emotional or physical can beat ya up... Enough already.....

Lessons I have learned..... I will be sore if I sit on a terribly uncomfortable chair for a long period of time (over an hour). Like a stool (yes I did this..dumb), folding chairs like at the kids banquets, or in the car (but longer). I must listen to my "butt"..hahaha... if it tells me to get up, then I get up. No more forcing myself to "sit through" things. It is not worth chancing pain.

My scar has healed well, unnoticeable. I have not tried biking. There is no activity that I have done that has hurt. I mentioned before that this surgery did not harm the old sex life..... that is still true. No problem. Hmmmmmmmm..I think I covered everything.

Please feel free to email me if you have questions. Take care all and hang in there.

Michelle (by the way, I will not ride waterslides still.....most likely never will again since this is what started this mess :-) )




Worst pain I've ever experienced!!!

Michelle - Michelle21578@aol.com

I broke my tailbone about 3 weeks ago in a 4-wheeling accident.. The biggest accident was getting on the 4-wheeler in the first place, but that is a different story...

When the accident happened everyone told me that I had just bruised my tailbone and there was nothing the doctors could do for me. So I tried to put up with the pain, but it was too severe. Three days later I went to the doctor and sure enough, I had broken my tail bone. It has been the most excruciating pain I have ever felt. I want the pain to go away. I don't like taking pain medication cause I don't like the way it makes me feel.

If anyone has any helpful hints, PLEASE let me know

Updated 2003-05-04




Success with the surgery

Mike Davison - grouchymike@cox.net

Original posting, 2003-08-10:

I had the surgery on 11th of June 2003.

I am a 37 year old male and have a very high tolerance for pain. I had symptoms of coccydynia for almost two years. I had pain when sitting and increasing for the amount of time sitting. A sharp pain when moving from sitting to standing, but no pain when standing. In the last few months a new symptom developed. Sometimes when I sit I would feel the coccyx dislocate. It would feel like two bones knocking together.

The first six months were mild but getting progressively worse. I went to the doctor and was x-rayed. The films showed nothing abnormal and was advised to use the donut cushion. The doctor even said the coccyx cannot be removed. I used the cushion and things did not get better but slowly started to get worse. I couldn't go to see a show and the duration of a dinner out was about the limit. I did purchase the coccyx cushion, (the one with the U cut out in the rear) and cut the strap that holds the U shape in place so I could pull the U further apart when I sat. This really helped.

I then found your site which has helped me immensely. I printed out all the info that was relevant to me and brought it in to the doctor (Dr. Kaiser). They will not take an x-ray as described on you site. They also sent me to physical therapy. Manipulation did not help. Kegal exercises that they recommended just made things more sore when not sitting. Then I was sent to physical medicine where shots were recommended. I said no. I then DEMANDED additional x-rays. This time I laid on my side in a fetal position and had one x-ray taken relaxed and one with me performing a kegal, (for us men, an anal clench). The two films side by side showed the coccyx moving dramatically.

Meanwhile, I had been taking vicodine as needed. This allowed me to eat out with some comfort and even see a show. It also allowed me to drive a longer distance. It doesn't make me drowsy but it may for anyone else so be careful! Half an hour before an event I will take 1 or 2. (5/500 mg)

From physical medicine I went to the orthopedist. He looked at the x-rays and asked me what I thought. I repeated my story and said it's gotta come out. He agreed. He also told me that there is a high infection rate of about 20% for that procedure. Since my life has been on hold with this problem for some time, I felt I had no choice. My confidence was also boosted by his 30 previous operations for this problem (he is a surgeon with Kaiser in Southern California). The operation would take about an hour and I would stay the night in the hospital.

The day before the operation I was given flagyl for antibiotics and phospo-soda. Phospo-soda is to clean out your plumbing. It's the worst tasting stuff I have ever drank and two hours later if I swallowed a marble it would pop out in 30 seconds just as clean as when it went in.

Recovery was difficult at first. Laying on one side or the other. I recommend very little food or a liquid diet. Being able to sit on the toilet is one problem. Having a bowel movement is completely another problem. The internal swelling pushes on the colon restricting movement. Even extreme pain just coughing, sneezing or nose blowing. The incision is just above the anus and the bandage is taped on with something they use for assembling rockets (my wife refers to the bandage as a manpon). It's not coming off for one week anyway. What follows is the daily recovery (days in bold I consider significant):

Note: A fractured coccyx is a physical problem. Get a proper diagnosis and get treated. Hocus pocus medicine will not help. If you don't like the doctor, go elsewhere.

Update, 2004-01-11:

7 months since surgery.

With very few exceptions, life is back to normal. The exceptions are:

I have since:

(All right, I didn't do the last thing. I'm thinking about it.)

Update, 2011-06-12:

8 years post surgery and everything is in the distant past as if nothing ever happened. The only time I think about my experience is when I get an email on the subject or when I see someone with a coccyx cushion. My surgeon was Dr. James Lau (see Doctors and specialists in the USA, California)




Doctors in the Netherlands?

Monica - monica38@solcon.nl

Firstly thank you for your great site which I have just discovered today. I smashed my coccyx about 4 months ago while getting on to my bike ( on the pointed end of the saddle) and basically have had acute pain on sitting and lying since then. Strangely, enough cycling is actually fine as you are not actually sitting on your coccyx.

I am English, but live in The Netherlands and wonder if anyone knows of any doctors that could help either in The Netherlands or in Belgium? I have already tried manual therapy which helped a little the first time but the pain just came back. The manual therapist was not able to actually manipulate the coccyx itself because that was just too agonisingly painful for me.

Can anyone recommend a doctor or therapist to me?

Thanks,

Monica

Updated 2003-10-12




Muscle spasm caused the pain

Nad - NM_1@excite.com

We are grateful that my wife is cured now and we would like to share with all of you the journey and the cure, hoping it would help you.

For 1 full year we spent every day either visiting a doctor, making a test or taking pills. The insurance company must have paid thousands of US$ in the process. We had no social life, basically no life. My wife could not sit, the pain was continuous, day and night.

Ignorant doctors called the cause "coccydynia". And they all insisted it was the coccyx that caused the problem, my wife however always knew the pain was around the coccyx, but it was not bone related, we however always took the doctors opinion and followed their lead.

My wife went to 3 orthopedics, 1 pain management (who gave her steroid shots in the coccyx area and wanted to kill the nerves which I disapproved), 1 neurosurgeon, 1 neurologist, 3 OBJ and she did a fibroid removal operation, out of desperation, hoping that pain was caused from pressure of the fibroids, 1 physical therapist (ultrasound + heat), 1 massage therapist, she also was subjected to tests like MRI, CT scan, bone scan, x-rays and others. Some doctors advised to remove the coccyx, while others disapproved, etc. Basically we were shooting in the dark and felt hopeless since doctors were contradicting one another and none of them made sense.

UNTIL one day, an orthopedic doctor advised my wife to check if she had colon cancer and at least eliminate the possibility since that was the only test we did not do, so he suggested us to visit a colon & rectal specialist and at that day the Heavens must have been open and our prayers were answered, we finally found a doctor who knew what was wrong and he pinpointed exactly the problem and cured it 90% within a week and 100% within 3 weeks.

Before advising you with the details, my wife's symptoms were:

What she had was a spasm of the levetate muscles around the rectal area, that is why it is impossible for her or the doctors to generate/reproduce or mimic the same pain she felt. This pain is usually MUCH more severe for men than women.

My wife felt 90% better in 1 week after she took the following medicine: Robaxin 500 mg with 1 pill of 81 mg Aspirin (Baby aspirin) x 3 times per day, somehow they work well together. [Robaxin is a trade name for Methocarbamol]

Our doctor in Houston who helped my wife is Dr. Ernest Max, Colon & Rectal Specialist, phone No. 713-790-9250

We know how you and your family must feel and we are soooo grateful that my wife is cured so we decided to spread the word to all the people who are suffering from this ruthless pain.

Best of luck, we hope the above would help you. What is terribly sad is that you will encounter so many unqualified stupid doctors who are more worried about their ego therefore giving wrong diagnosis and false hope to their patients rather than admitting they do not know.

Updated 2003-08-10




Ovary removal left me with tailbone pain that won't stop

Nancy Abdo - nancndon@aol.com

November 5, 2002 I had an uneventful surgery to remove my left ovary.

I woke up in pain (tailbone) and immediately thought that the surgical team had dropped me on the table.

It has been 7 months since then and I literally cannot sit or stand without pain. Every moment of my day is wrapped up in trying to deal with the pain in my tailbone.

I was told by a orthopedic doctor that the ovary is anchored to the tailbone and when it was pulled out of the small laparoscopic incision that this disturbance may have damaged my tailbone leading to my pain. This does not seem fair to me and I would have much rather had a large incision that would have healed slower instead of this life sentence of pain in the name of a fast recovery from surgery to remove my ovary.

If anyone has suffered similar situation - please email me to let me know how it is going.

sincerely,

nancy abdo

Updated 2003-04-27




Doctor ordered mammogram (?)

Nancy

I read the postings on the coccyx pain website and took such great comfort. I have had unexplained pain for about 5 months. It hurts most when getting up from sitting or while sitting if I've been there for awhile. The pain is at the very tip of the bone and very localized.

I had a doctor tell me to get a CAT scan and mammogram. I asked him why the mammogram and he said that bone pain is often due to metastisized breast cancer. I freaked out and have been panicked ever since. My tests are tomorrow.

My head tells me he made a huge leap and it is totally unreasonable to tell someone they think they could have bone cancer when they haven't even been diagnosed with the breast cancer it was supposed to have come from!

Sincerely, Nancy

Note from Jon Miles:

Nancy's symptom (an acute pain while rising from sitting) is typical of a coccyx that dislocates when you sit down. I have never heard of a doctor ordering a mammogram because of coccyx pain, and this is not a test that is suggested by doctors who are expert in this field.

Updated 2003-08-10




Tailbone pain caused by rare tumor called chordoma

Nicki B. - tucker1@zoominternet.net

I remember almost specifically when my tailbone pain started - October of 2000. I just assumed it was because I was sitting so much - I am a medical transcriptionist - and the chairs at the hospital were *garbage*. But, I had a good chair at home and worked as much at home as I did at the hospital. Finally, in January of 2001 I quit the hospital and started working from home only. I started seriously trying to resolve my tailbone pain in January of 2002. I tried chiropractic, anti-inflammatory medication, manipulation and even a Cortisone shot in September of 2002. Nothing helped. I was about to press for the dynamic x-rays, since the plain x-rays showed nothing out of the ordinary, but I decided to ask my orthopaedic surgeon to do an MRI. He did not hesitate and said that if I wanted an MRI we would get one. I told him that since both of my parents died from cancer, a tumor or cyst was a concern and I would just feel better. He was in full agreement. Out of curiosity I also asked him what, realistically, were my *chances* of having a tumor in that area . . . . he said about 1%.

Well, it turns out that is exactly what my problem was, but not the usual tumors and cysts you read about (not a Tarlov's cyst). What was causing my coccydynia was a tumor known as a chordoma, which is EXTREMELY RARE. In a nutshell, when we are all embryos we are formed with two spinal cords. The one in the front generally disintegrates and we are left with what becomes our spine. Mine did not disintegrate. Chordomas are basically "embryonic notochord remnants". The statistic I read is that 0.2 per million of these occur - VERY RARE. I was very lucky though, because some people develop these tumors in their brain and there is basically no help for them.

I had my tumor and my coccyx removed on December 17th 2002. The tumor was about the size of a plum, 6.5 cm x 6.5 cm. Although it is not "malignant" per se, it is also not "benign" either. I never knew there was a gray area on this subject, but apparently there is. The good news is my surgeon got the entire tumor with clean margins - and it had not yet started to destroy bone. He only had to take my tailbone. There was concern he might have had to go further up the spine, which would cause permanent lifechanging complications. Thank the good Lord he did not have to do that. My recovery has been incredible! I went back to work - sitting - on Monday, the 6th. Actually sitting at my PC is not bad at all. Sitting in my car, Lazy-Boy and church pews is still painful, but I do believe it is getting better. My incision is in an "unusual" place, if you know what I mean. There were about 20 stitches in all, and from what my hubby tells me the incision is about 6-7" long. The bad news - these tumors statistically do return, I was told probably in about 5 years or so. I know my doctor will keep a close eye on me, in hopes that we can catch this very early if it recurs. He said it will come back right where it originally was, but since there is no coccyx to attach to, it will go to the next vertebra.

You have no idea how grateful I am that this is, for the most part, behind me now. If the tumor grows back, I will deal with it. I cannot stop it, and no amount of "good living" will have an impact on this thing. My sincerest sympathies go out to anyone who suffers from this pain because it is extremely annoying at the very least. I wanted to let you know my outcome just in case it might help someone out there who is frustrated. Like I said, I was about to press for the dynamic x-rays, but decided to ask for the MRI first - - - I STRONGLY URGE ANYONE WITH THIS PAIN TO DEMAND AN MRI! It may save your life!

Feel free to email me with any questions - please put "tailbone pain" in the subject.

Sincerely,

Nicki B

Updated 2003-01-19




Cindy please reply to Nicki B.!

Nicki B. - tucker1@zoominternet.net

Cindy - I accidentally deleted your message before I could respond! If you are Cindy who is 35, has 3 children and Kaiser insurance, PLEASE email me again! I promise I won't delete it by accident this time!

If you don't want to email me again, it's okay - just PLEASE stop taking "You'll have to live with it" as an answer for your tailbone pain - it is not fair to you and you deserve better! Find a doctor who will HELP you!

Updated 2003-05-25




Does anything actually help?

Nicola

I am twenty-one and have been suffering from pain in and around my coccyx for as far back as I can remember. Three weeks ago I had my third manipulation under anaesthetic, and yet again it hasn't helped. If anything, it's given me additional pain in other parts of my back. I have tried just about everything possible - physio, acupuncture, painkillers - the only thing that even touched the pain was seeing a chiropractor. And even that relief would only last a day or two. My consultant is reluctant to remove the bones, and is hoping to treat it as a last resort with the risks being so high and me being so young.

I had a scan a year or two ago, which showed that my back is pretty much knackered. Having not injured it in any way, it has been assumed that I was born this way. I have slight scoliosis, giving me general pain in the lumbar area, but is not severe enough to operate on (yet). My sacrum, rather than continuing the 'S' shape of the spine, sticks out at such an angle that my coccyx is less than a centimetre away from actually being outside my body. The coccyx itself, bizarrely enough, has never fused together and is still in segments [But see note below]. Hence the severe coccyx pain. Whereas when 'normal' people sit down they are supported by their sacrum, my coccyx takes my whole weight (which admittedly there isn't a lot of with me being tall and skinny, but it's enough to put me in agony). I've tried putting on weight, to cushion it, but I just can't. I'm one of those really annoying people who can eat what they like and nothing ever happens.

I am due to go back to the hospital in 9 days, when I tell them is hasn't worked again and they tell me what we'll try next. My consultant is Mr Kocialkowksi, he is based at both the Manchester Royal Infirmary, UK, and at the private Alexandra Hospital in Cheadle. He is brilliant. He seems to be the only person who understands how much pain I am in every single day. I'm sure my family and friends think I'm exaggerating when I say how much it hurts, which is probably because the coccyx for some reason is seen to be quite funny. If I'd slipped a disk, now that'd be awful, but it's just my bum-bone right? How little they know.

I have one of those special cushions with the bit cut out, which does help by not applying pressure, but after a while it feels like my spine is slipping downwards because there's nothing to support it. Mr Kocialkowski has mentioned a new treatment that involves burning away at the bones with electrodes, but it is still experimental at the moment so I'd be a guinea pig. And although I trust him, I'm not sure I'd want to go ahead with something so new.

I worry about the future a lot. Especially the thought of having kids. My boyfriend and I have talked about having kids at some point in the future, and while it is something I want, the thought of the pain petrifies me. I suppose I'll just have to insist on having a caesarean. On top of that I worry in general. I'm 21 for God's sake, surely they can't expect me to go through the rest of my life like this? I'll have to pluck up the courage to have the removal done.

Thank you for putting this site together. It has made me realise I'm not the only one, and that there IS hope.

Nicola

Note from Jon Miles:

Doctors keep telling patients that the coccyx is normally fused into one piece in adults, because that is what their text-books tell them. They are completely wrong. Postacchini and Massobrio x-rayed large numbers of people and found that only one in twenty had a coccyx fused into one piece and separate from the sacrum. You can see an abstract of the paper here.

Updated 2003-04-06




Power boating accident

Ooouch

One week and a half ago I went out power boating with a few friends, I was at the helm. It got a little rough out there and I didn't slow down, so we flew up a 10 foot swell and quickly came crashing down, that's when it all started. Since then it's hard for me to sit certain ways and very painful getting up after sitting for a short while. I don't think it's getting any better, I never had something like this happen before and I don't know what to expect. I have not made any doctors appointments and I'm wondering if I should. I don't think my pain is as bad as some of the posts I read, but it still hurts a lot.

I'm wondering if anyone can give me some advice. The only time it hurts is when I'm sitting on hard surfaces and when I get up after sitting for a short or long period of time, the longer the more it hurts. I hope it's just bruised and maybe takes awhile to heal like bruised ribs. I would appreciate any suggestions you may have.

Thanks,

Oooouch!

Updated 2003-08-03




Office chairs with coccyx cut-out - great for home or office

Pamela Bishopp Pamela.Bishopp@oracle.com

I've been suffering from coccygodynia for three years and was almost certain that the time had come for me to quit my job.  I was in so much pain, I was willing to start my career all over again and take a huge pay cut just to not have to sit all the time anymore.

I have a stock pile of expensive cushions at home (Tempurpedic, Tush Cush, and one from Brookstone), but got very little relief from any.  None of the cushions offered any back support.  In some cases, because of the cushions sit you up higher on most chairs, your body is positioned away from the back support built into the chair.  I found that most of the time I was having to lean forward without any back support.

In a moment of desperation to keep my job I started searching the internet all over again.  I found a site that offered office chairs with coccyx cut-outs.  www.bizchair.com offered 4 different kinds of these chairs.  I chose one with a high back and lumbar support (see link below).  I spent $350 US (delivery included) and have now had the chair for two months.  This was a bargain.  I'm sure I've spent no less that $200 trying different types of coccyx cushions.  I wish I had been that desperate much earlier, because I find that this chair relieves as much as 70% of my pain while sitting.  It is the most comfortable chair that I own and I'm thinking of purchasing another one for home.  I combine it's use with a TENS (transcutaneous electronic nerve stimulation, which is prescribed by a doctor) device and I can even be pain free for a couple of hours at a time.

If you've been suffering in job or at home and the standard coccyx cut out cushions just aren't working out for you, I'd recommend that you purchase one of these chairs.  You may even be able to get your employer to pay for your office chair.

Good Luck and God Bless Us Everyone!

Updated 2003-03-02




Acute coccyx pain

Parker King - parkerking@aol.com

I am a 54-year-old male, very tall and a bit overweight. I sleep on a Tempur-pedic bed. Every few months I am awakened by acute coccyx pain. Last night at 2:15, I was awakened with this pain, which feels like a very strong kick in the tailbone (something I experienced as a youth) and struggled to get into the bathroom thinking it might be a rough bowel movement. Once there, I felt myself break into a cold sweat and nearly pass out as I sat. No bowel movement occurred.

This has happened about 3 times before in the last couple years, but this felt a bit more severe. My doctor was stumped when I mentioned it before, but as it only happens every few months, he ran no tests. Anyone with experience with occasional acute coccyx pain?

Thanks.

Parker King

Updated 2003-03-23




Prozac and Dr Sarno's book

Patrice

Please everyone hear this,

You can heal your coccyx pain. I had it terribly for almost 3 years!!!! And did Everything to try to heal it. Finally I did two things and my pain is totally gone. I started on the anti-depressant Prozac and read Dr. Sarno's book Healing Back Pain. I started doing the inner work suggested and between the two I healed myself!!!

Another guy on this site had also done the Sarno work and healed himself from this nightmarish condition. You must read the book with an open mind. The brain causes pain and you can turn the whole thing around.

I swear to God you can heal this. Just do the work, sit on your ass, breathe through the pain, tell your brain to cut this crap out, and you will soon be pain free as we are.

Go for it!!!!!

Love Patrice

Updated 2003-01-19




Born with a long coccyx

Peggy - SunsetTeen@aol.com

Hi, it seems I was born with a long coccyx. Lately, it seems as if it is protruding even more. (Is that possible?) It has also become slightly uncomfortable when I sit on it. I haven't injured myself recently. What should I do? What kind of doctor should I go to? And what types of X-Rays are suited best to see if anything is wrong?

Do most people with long coccyxes suffer problems too?

Any information would be welcome!

Thanks

Peggy

Updated 2003-09-14




Need a comfortable cushion

Pollie - pollie_kasbia@msn.com

Hello everyone! I completely sympathise with you all out there who are suffering from coccyx pain. I broke my coccyx after falling down the stairs and banging my 'butt' on five of them! Damn those toys left lying around! I have been in bed for about four days now and am eating my hat! But I know that in order for the coccyx to heal I have to rest, and I can see from some of your letters that to aggravate it can only mean trouble!

My hubby has been very helpful with the kids and I hope to feel better real soon. If anyone knows a very comfortable cushion to sit on - please, please let me know!

Ta. xxx

(See the cushions page)

Updated 2003-05-18




Childbirth complications

Rebecca

I delivered my first baby last April - after pushing for two hours the doctor's could see that she was stuck at my tailbone and wouldn't "make the turn" so the decision was made to use forceps. I felt like Mr.Bean's Christmas turkey as over a dozen doctors and nurses poked their heads in to have a look at my oddly shaped coccyx. Thankfully I was frozen solid and couldn't feel a thing but when the medications wore off I was in agonizing pain.

I realized I had bruised/broken/injured my tailbone but the nurses seemed to brush it off and act as though I was crazy. From reading other women's stories this seems to be typical. My doctor said to give it 6-8 weeks to heal and cheered me up by telling me how another patient had broken hers and her son was now 18 months and she was fine. 18 months! I was not happy.

I couldn't sit on anything other than my hard seated, straight-backed dining room chairs for months. Nursing my daughter was an ordeal and travelling in the car was almost impossible. Twice, just as I was starting to feel better, I shifted in my chair, heard a grisly "crack" and felt it shift. Then I was back to square one. It took six months to finally feel better and now, 9 months later I can say I'm 95% healed (thankfully!!)

In the meantime I've developed an allergy to anti-inflammitories due to the large number I took during those months and am off all pain killers other than Tylenol. The other week my husband brought up having another baby and I realized that I am terrified of going through this again. I'll happily do 9 months of pregnancy and another 36 hour labour but 6 months of tailbone agony has me petrified with fear. I would love to hear from someone who DIDN'T break their tailbone the second time around.

Rebecca

Updated 2003-02-02




Thank God I am not alone

Rebecca - DreamerReb@aol.com

My name is Rebecca and I am sitting here crying because your story was almost an autobiography. I was a computer engineer. In 1998 I fell with a server in my lap. it is a little larger than a normal PC. I landed on my tailbone. I knew something was wrong, it felt bad. I went to my doctor and he took an x-ray of my back. He diagnosed me with a lumbar sprain. And gave me six weeks of therapy and so my personal hell began. I was contracted through my company to work at Ravenswood Hospital. I was under a lot of pressure to return to work, so after 6 weeks I said I was ready to return to work. I loved my job and was greatly needed for desktop support. I always felt this stiffness and pain in my butt. I told Ravenswood I could not lift anymore and walking was so very painful. Sitting was and is the most agony I have. They brought the computers to me and since I was head of desktop the people who worked with me understood that I now had restrictions. While the pain was getting worse and worse.

I started getting a terrible pain in my chest. It felt like heartburn only worse. Now I went to the same doctor for the pain in my chest he said it was acid reflux and put me on prilosec. One day I woke up and really could not walk well. I went back to same doctor and he again said I sprained my lumbar. For two years that quack kept on taking me off work for 6 weeks at a shot and prescribing more and more pills for heartburn. I finally went to a gastorolgist and he got me to the hospital for emergency surgery. I had 6 GALLSTONES AND A NON FUNCTIONING GALLBLADDER. The largest was 3 cm. All the time my back was getting worse.

I now walk with a limp. I went to an orthopedic surgeon, rheumatologist, the surgeon said I had some degenerative arthritis, the others all varied, I had sacriliitis, one guy said I even had a tumor. Therapy didn't work, nothing did. My company's contract with Ravenswood hospital came to an end in March 2000. My company put me back in the field. I lasted two weeks and walked off my job. I couldn't even pick up my tool box.

I have filed a work compensation case. After the pain clinic started burning the nerves to no avail they, said I had permanent damage and I could no longer work at my career. I finally got my social security disability in 2002 after two years and 20 doctors.

I went to CINN doctors and they diagnosed coccydynia. I cried because finally something made sense. They said my coccyx was fused and bent. I now have a spinal cord stimulator. They said the did not think removing the coccyx bone would help.

After reading your experience I am wondering if it would work. I am never without pain just sitting here writing this, I will not be able to get up. I just want 2 HR without this constant pain. It has put a strain on everything in my life, financially, sexually, physically. I am so glad to know that I am not crazy this is not all in my head. I would like to talk to someone who understands. and is there hope for me??????????? I walk with a limp. I walk with a cane. I have a wheelchair for any distance. I cannot begin to tell you how many things I can't do without pain. They all say it is permanent and will get worse, because now it is a arthritis site and it is degenerative.

Well I have talked enough. Thanks for your time.

REBECCA

Updated 2003-03-02




I am sure my coccyx is broken

Rob - robert.mitchell@telia.com

I am 45 and remember as an early teenager I was playing soccer with the lads. I spun and kicked the ball in front of a tree at almost full sprint, lost my balance and landed coccyx first on the exposed root of this tree.

I was speechless, thoughtless, motionless in fact all of the 'less's you can be and still alive. I was absolutely paralysed with agonizing all pervasive pain. My friends of course took a while to see the severity of it ,and after about 5 minutes they gradually decided that I should be helped home; about 400 yards away. This took over an hour in which space of time I passed out 3 times with the pain. My parents were not home at the time so my pals took me to my room and left.

Next day my mother called the doctor after I had not been able to get into, let alone out of, bed. He arrived and said " Bruises"; take it easy for a few days and all will be well.

It was..I know this is not the usual way of this problem, but hey, it was. The only thing that I noticed was a short, not too severe pain when my coccyx clicked occasionally when sitting down. That was then. For the last year it has been a nightmare. It clicks all the time when I move any of the muscles in that region. Be it for defecating or stretching, even breaking wind whilst sitting. It gives such a sharp all powerful pain that I often cry out.

The problem for me is that because it is not a constant pain, I cannot get a bloody thing done about it. I cannot get even an X-ray done here in Sweden as they say "What can we do about it anyway?".

I am not sure if I am making a useful addition here but, be warned. It seems that the problem is not "on the list" here in Sweden.

I do need to get this thing sorted one way or another soon, as it is getting steadily worse and now has a constant and sometimes sharp pain. I fear sitting, especially if in company.

Can anyone offer advise that will make sense here in Sweden ?

Updated 2003-06-29




Persistent coccyx pain

Rosamund

I'm residing in France and I was very delighted to come across this site which has helped me to be aware that my case is not an isolated one. First of all I would be much indebted to you to pardon my very bad English, I'm a Mauritian living in France for more than thirty years.

I'm nearly sixty years of age but look much less, I was an ex-bodybuilder. I was still training very hard when that misfortune happened to me on the 31st of July 1999. I was working on that last day of July 1999 when I made a very bad fall just on my coccyx, it was an industrial accident. I was immediately transported in hospital but the doctor who was in charge of me was undoubtedly the biggest idiot I've ever met in my life. Instead of taking an immediate x-ray to situate the fracture he just tell me to go back home because I've had only a lumbago (I forget to tell you that I spent three hours in the emergency block before he had examined me). The pain was unbearable and I suffered hell.

This is the point where I want to come, here in France you can choose your doctor, if the one you have gone through is not the right one you change for another until you find the right one. Instead of treating my coccyx I have swallowed of sorts of medicines for lumbago during five months until the time I could not bear it anymore. After four or five doctors I have found the good one who immediately prescribed many scans and the results are luxation and fracture of the coccyx.

I will not describe the treatments I received till now, but to all those who have the coccyx problem let me tell you that the best treatment for that is Voltaren. It is radical and it relieves you instantly, you must be very careful so as not to make abuses. When I drive I must automatically put a little inner tube under my seat, it permits me to drive without pains. As regarding the problem of sitting, you should learn to sit on the back of your thighs in order that your coccyx does not support the weight of your body. Apart from that there is nothing more to do, you can only alleviate your everyday life. One thing before leaving (never undergo any surgical operation), you should learn to live with that handicap and who knows the future.

God bless you all.

Updated 2003-04-27




Osteopathy treatment

Rose

I started suffering from coccydinia aged about 12. Sitting down wasn't so much a problem - but moving so as to relieve the pressure on the coccyx was, and standing back up was excruciating. Coping at school was difficult at times and I was in agony every time I had to change classes. My GP said I'd grow out of it and prescribed painkillers / anti-inflammatories.

Well, to a large extent, I did grow out of it, at least until I was in my mid-twenties. I had a few ungainly falls upon my rear end and the coccyx flared up again. Back to the doctor who prescribed anti-inflammatories and said the only cure was surgery - which he wouldn't recommend. My husband was having osteopathy at the time for his tennis elbow - and the osteopath suggested he could treat the coccydinia. After 6 treatments he cured it through manipulation. No surgery, no drugs. That was 15 years ago and I've had no problems since.

Rose

Updated 2003-09-28




Releasing caught nerve ends

Sally - geofsal@bigpond.com

Initially my surgery site below the remaining coccyx segments was soft. It is now almost as hard as the bone it replaced.

Another t-bones member warned me that getting nerve ends trapped is a potential problem. This unfortunate lady has had a terrible time with hers.

I asked my surgeon and my GP, neither were of any help. I was fortunate to find a very good physical therapist. I was at almost 4 weeks when I finally found him; he said the ideal time is 3 weeks. He explained that the cut nerve ends swell slightly and are what he called "a bit sticky". This gets caught up in scar tissue and held firmly. He was able to free mine before the scar tissue set.

While working on me he explained what he was doing so I'll repeat it here for those willing to have a partner give it a go. He was feeling over the last remaining coccyx segment and could quite easily feel the nerve as it ran over the top of the coccyx, this was caught in the surgery site below the bone, he felt it give as he was moving it around, he thought I would feel it 'twang", but I didn't.

I had an appointment the following week and he had me lay on my back, I put a fist under one buttock so I wasn't flat on my back, none of us can lay flat. With my legs extended straight out he lifted the right one quite high and across to the left side of my body, this hurt initially, he then did the same with the left leg, this didn't hurt. He then re did the right one, this time it didn't hurt; I presume he had released a nerve end that was caught with the first stretch of the right leg. He probably did this leg stretch on my first visit also, I don't recall.

I hope this will be helpful to those who have had surgery in the last month.

Cheers Sally C. from down under

Updated 2003-12-21




Seasonal coccyx disorder

Sarah - ozragreen@yahoo.com

Original posting, 2003-01-12:

I was a popular dance team member in high school. Then, ohmygod, one night, during my junior year, I was performing a kick line and I fell backward and landed on my coccyx.

Ever since, seasonally, when barometric pressure suddenly shifts, upwards and, especially, downwards, I cannot sit down or concentrate on my tv shows.

I just wanted to share this story of my pain and ask if others also suffer from seasonal coccyx disorder (SCD).

Thank you and sincerely, Sarah

Reply, 2003-04-13:

I have no idea what has caused my pain. I thought I was developing arthritis or something (although I am only 25 years old). I did fall recently hard on my back after slipping on icy steps but I had already experienced the pain long before then (although, I am a complete klutz so it is entirely possible that I fell and did not notice the pain right away or relate it to the fall). My job requires me to sit at my computer for 7 or more hours a day, which may or may not be the cause.

Anyway, about 3 years ago, I had this tingling sensation go down both legs every time I would nod my head forward. I went to see a doctor and he told me that it was caused by sitting for long periods of time with my legs crossed. I tried to stop that but it was such a habit that I didn't have much luck but luckily those tingles stopped on their own a few months later. They return every once in awhile but do not last like they did the first time I had them. Then a year and a half or 2 years ago I starting getting this pain in my hip. The only way it felt better was if I stretched a certain way and then, as soon as I would go back to the regular position, the pain would come back. That pain would come and go all the time (it might come and last a week or more but then it might go away completely for a month or more). Then I suddenly developed a similar but more acute pain in my tailbone. It hurts when I stand and when I sit. Some days it is excruciating and others it is gone completely. It doesn't bother me when I am sleeping or laying down. The worst thing is, I am asthmatic and cough a lot and it hurts a lot when I cough as well. I often wondered if I was going crazy and then today, a particularly painful day, I decided to look it up on the internet just to see if anything would come up. I was so surprised but happy when it did. I am glad to know that I am not alone.

Although I am not sure whether my pain is related to the change in barometer pressure or what causes it to come and go, I would certainly love to find out.

Does anyone out there have a similar story and / or have any suggestions on how to cope with it or cure it?

Marie-Chantal Casey - mccasey@universalia.com




Acupuncture worked for me

Serge from Montreal - sergelanglois000@sympatico.ca

I've been in pain all summer, can't bicycle, hard time to sit and drive my car. Went to my acunpuncturist for 6 treatments.

WoW it really works for me... No more pain, I can sit very well now fantastik...

So if you never tried acupuncture give it a try.

Serge

Updated 2003-08-24




Doctors acted like I was making the pain up

Shar - Sharmaw5@aol.com

In Feb 2003, I was at a store and picked up a 20 pound box from the shelf, I was holding it in my hands when another 20 pound box fell on me and hit the box I was holding. That made 40 pounds. Right away, I got a severe headache, had the headaches for over 2 month. I also felt something like a pulled muscle in my right side and pain down my right leg. Well a few days later my tail bone started hurting. It felt like a throbbing pressure kind of pain. I went to a pain management doctor and had 3 nerve blocks and injections in my tail bone.

I spent 5 months with this doctor and just last week when the last injection didn't work, he informed me that he didn't know what was causing the pain or what to do about it. he just dismissed me. I was so hurt and mad about all the money I had spent for nothing. He acted like I was making this pain up. I can't sit down, I can't drive over 15 minutes, I have to sleep way over on my left side and sit from side to side. Can anybody tell me who to see about this pain?

The store's insurance is supposed to pay for the medical bills, so far they haven't, but if this doctor tells them that he don't know what is causing the pain, then what am I going to do? I had an MRI and bone scan and emg's and nothing showed up. Can anyone help?

Thank you

Shar

Updated 2003-10-12




Broken T-Bone and surgery to come

Sharon

Original posting: 2003-03-16

I am 25 years old and suffering from coccygodynia caused by my broken tailbone. I have fallen several times over the past few years and can't be sure when it actually broke, but the increasing pain led me to have X-rays taken by my doctor. During the last several years the pain would flare up again only if I sat for long periods of time (mostly at school or in the car). Occasionally I would experience pain after strenuous exercise More recently the pain has increased to a daily problem and continues to get worse. The X-rays showed my tailbone to be broken at almost a 90 degree angle which explained why so much pain! My doctor wondered how I had broken my T-Bone without knowing it, and I wonder myself. I do recall severe pain after a couple of bad falls but I just sat on a donut pillow for a few weeks and eventually it went away. My doctor prescribed pain killers and said I should "take it easy" for 6 months to see if I felt better. This was not an acceptable option for me as the pain was increasing daily and I did not want to be on medications the rest of my life. So I requested a referral to an orthopaedic surgeon and so began my journey of (hopefully) finding relief.

I saw the OS in November (2002). I was very disappointed with my visit as he was relatively unsympathetic to my daily pain (I think that being a young healthy female creates doubt in people's minds...) He did suggest a series of cortisone injections to try to ease the pain. However, I was concerned about the nature my problem causing trauma during pregnancy and childbirth as my angulated T-bone points directly to the birth canal (this possibility was pointed out by my family doctor, and I have read similar stories on your site). I am not pregnant BUTT my husband and I would like to start a family within the next couple of years so I wanted to take care of this "problem" ASAP! The OS sent me to an OB-Gyn before trying any pain therapy. She (also) was fairly unsympathetic to my condition and said that "it will probably just break again during delivery, but that kind of thing is fairly common". Okay, also not a good diagnosis!

Well, I didn't want to see the same orthopaedic surgeon again as he had terrible bedside manner and I felt he was very unqualified to treat my injury. (I called the office anonymously to find out if he had performed any coccygectomies and the receptionist said she "thought he might have done one in medical school!".) Well I began the quest of trying to find a new OS who had the right experience and finally found Dr. Benson at the UC Davis Medical Center (a spine specialist listed on this site). Not so easy to get my HMO to approve me seeing him though, as he is outside of my group. After (literally) several months of paperwork and dealing with the inefficient bureaucracy of an HMO I finally had an appointment scheduled 2-27-03. During this time I became very familiar with this site and I have to say it is so encouraging to read so many stories similar to mine! It is aggravating that many people don't understand the daily pain and disappointment as this has changed my life. I have spent the last several months at work standing or kneeling which has caused new pain in my back, legs and feet. The pain has increased so much I've had to start taking pain medications at work which prohibits me from driving (a daily part of work) and lowers my ability to concentrate. I work 10-11 hours a day and come home in so much pain I can only lay down on my stomach and use heat pads and ice packs to try to numb the area. My hips and thighs are so sore from sitting and laying on my sides that this pain almost overrides the butt pain. I usually do not leave the house on my time off and it has been months since I've been able to go to the movies or church or pretty much anywhere that requires sitting or driving longer than 20 minutes!

My visit with Dr. Benson was very painful but very encouraging. He pressed (very hard) on my T-bone to see if that's where the pain was coming from (I nearly went through the roof and lay there crying for several minutes.) He then decided to do an injection of cortisone, steroids and several anti-inflammatories of some sort which were supposed to numb me completely. Let me be very honest in saying that this injection was the most painful experience of my entire life. It seemed like an eternity of the worse burning pain you can imagine. I was bleeding and crying and it was terrible! They left me alone for a few minutes then came back in to see if the numbing had started (if it had it was a clear sign that my T-bone was the problem and that a coccygectomy was the right solution.) Well the pain was so bad it was hard to tell if there was any numbing BUTT I thought I could feel it. Dr. Benson decided a coccygectomy was the best solution. The staff were all very encouraging and promised me that I would soon find much relief! He prescribed me Vicodin as well as the Darvocet I was currently taking wasn't really helping the pain, then the nurse came in to schedule my surgery date (4-10-03). I was pleased to find that Dr. Benson has performed many of these surgeries (the nurse thought at least 200 or more) and has found almost all positive results. I left there feeling very encouraged and looking forward to my surgery ... then the pain set in even worse than before.

Turns out the injection only made things much worse. I now have a direct sharp pain in the coccyx whereas it used to be sort of residual pain from standing or sitting. I am told the pain is from the internal bleeding and bruising caused by the shot. If I sit the wrong way it's as if I have sat on a tack. My job has become unbearable as I wear high heels and am very active all day. The pain gets worse each day and I finally told my boss I could not continue working up until the surgery. He suggested I take a week off to rest and see if the pain diminishes, and if so suggests I return to work half days until my surgery. So ... that's where I'm at right now. One month until surgery. I look forward to it as it seems it should completely take care of the problem. But I am nervous after having read some horror stories. I am tired of living with pain on a daily basis though and eagerly awaiting a solution. I may not even return to work pre-surgery and just take some time to prepare for the down-time. If anyone has suggestions I would gladly take them. I have downloaded pictures of my x-rays and will send them to you if you want.

Well, wish me luck over the next month I will try to update after my surgery!

Best regards, Sharon

Updated 2003-07-13:

I had my coccygectomy April 11, 2003. I wanted to update my story sooner, as I have had a lot of people write to ask how I'm doing….but I guess I was just waiting to be able to share the good news. Well so far, not much good news to share. I am about 12 weeks post-op and still haven't returned to work. The pain isn't terrible anymore, so long as I don't sit, stand or walk for too long. But I am still on a regular dose of narcotics (Ultram) and Celebrex. My doctors aren't too sure why it's taking me so long to recover; I just still have a lot of inflammation and pain around the new tip of the coccyx.

The surgery itself went great. Dr. Benson at UC Davis performed the surgery (See list of specialists, he has done literally hundreds of coccygectomies!) When I came to in the recovery room the pain I felt was unbelievable. I was hyper-ventilating and trying to jump off the table. They quickly set me up with a patient-controlled morphine drip and that took care of me quite nicely. The first night I was very tired and got very sick from the morphine (they switched to a synthetic version, Dilaudid, and then I was fine). I was able to get up and go to the bathroom about 10 hours post-op. I ended up staying in the hospital 3 nights and 4 days. They attempted to send me home sooner but as soon as the Dilauded IV was removed the pain set in so badly I couldn't move. Finally they prescribed me a pill form and sent me home.

The first week wasn't too bad as long as I stayed on a regular routine of Dilauded (the first few days I had to take 2 pills every 3 hours, setting an alarm at night to continue taking it). I was severely constipated for almost a week but finally after many stool softeners and laxatives I was able to go with minimal pain. Walking was difficult, I couldn't go very far. In fact, the first couple of days post-op I could only lift my feet a few inches off the ground. Fortunately my husband was able to stay home with me and take care of me for the first week.

The next few weeks went along rather quickly. The incision healed very quickly, I never had an infection or any drainage. I improved with every single day and was able to do more and more. I was able to sit on my coccyx cushion for almost an hour at a time. I was still in a lot of pain though, and continued to take Vicodin on a regular basis. I couldn't really tell if the surgery had worked, the pain still seemed to be there. I was planning to return to work part-time around 6 weeks post-op.

Then, one day I overdid it. I had gone to the pool to try and swim and get a little exercise. That week (about 7 weeks post-op) I had been out of the house a lot, trying to engage in more interesting activities than laying around the house. I ended up having a total relapse of pain; I felt just like I did the first day after surgery with a screaming, burning pain in my behind. I had to take Dilauded again for several days. It was hard to walk and stand for very long, and sitting became absolutely out of the question.

I called the doctor's office and they said I had just really inflamed the area again, so it was back to bed for about a week. They prescribed me a new anti-inflammatory (Celebrex) and a new pain reliever (Ultram) as the vicodin was no longer helping the pain. Ultram has been a life-saver and allows me to be somewhat active.

So, I still haven't returned to work. I feel like I'm back to square one, and the pain is worse than before the op. I am scared to drive myself as each time I sit up straight in the car I get shooting pains (I'm afraid if I'm driving I'll swerve off the road or something). I am able to sit at the computer and do light housework for small amounts of time. I can ride in the car but have to recline the passenger's seat all the way and lay on my side. The pain really isn't terrible as long as I don't overdo it (which is actually pretty easy to do!). I am just waiting patiently for my butt to heal! Constant ice packs wedged between my cheeks really help the inflammation.

We've all read the horror stories of people who take months and months to recover, and I'm afraid I'm heading in that direction! I'm waiting for my health insurance to approve an MRI so we can see if possibly something else is going on.

Keep your fingers crossed for me and hopefully I can update again soon to tell you all how wonderful I am doing!

Sharon

Note from Jon Miles:

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

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




Fell asleep in the bath

Sharon - smcwormald@ntlworld.com

Original posting, 2003-06-01:

I fell asleep in the bath for 2 hours after I had flu. I had no pain at the time but the day after I had a mild ache, the next day worse still and the following I was in complete agony! This was 6 weeks ago and is slowly getting better, very slowly!

I find it very depressing but try to help myself with ice packs 3 times a day and a donut ring, I still can't drive and my confidence is low but it is getting better slowly. I see a chiropractor and he has assured me it is caused by inflammation of the tissues surrounding coccyx, having taken an x-ray. I cannot stand for very long and lie down to relieve pain. I do not take tablets because I don't get on with anti inflammatories.

Reading has kept me sane, and my boyfriend of 4 years dumped me 4 weeks ago so now I have to move house as well!

So have hope, take it easy, go with the flow and not everyone has to have ops, the same as normal back pain, some are worse than others!

Got to go, my bum hurts!

Update, 2004-01-11:

Ok just a quickie! As described previously I fell asleep in the bath in April 2003. It has now been 9 months and the pain did get a bit better, physio helped, but since new year it has come back with a vengeance, taking my confidence with it! I had a bad upset stomach and I don't know if this set it off again. During good times I dared to try s e x and the pain wasn't too bad!

I am depressed again but keep getting told it will get better, humm!

Sorry for not replying to Heather, I had computer problems again so got new email address!

Thanks to all for putting info on site. Best regards to all you sufferers!

Sharon Wright.




Painful sitting and walking after falling down stairs

Sharon Whitfield

My name is Sharon Whitfield and I am 20 years old. A few months ago I fell down my stairs from top to bottom and I landed right on my bum. It was very painful, but I didn't think anything off it at first. But it got a lot worse over the next few days, and I found it very painful to sit down, so went to see the doctor at my local surgery. He told me that I had burst my little bone of the very end off my back. He gave me a week off work and painkillers and told me I should be ok resting.

Now it's been nearly 8 months, and I have been back to the doctors about a week ago, and he is now sending me for a x-ray as it is still very painful. It also hurts in my legs when I walk, but you said you had no pain when you walked, but mine really hurts.

Anyway I have my x-ray on Monday 17th November and hopefully I will be able to find out what it is and start to get it sorted out.

I hope that you are well now, and I think that your page is very good, and I found it very helpful. Thank you

Best wishes

Sharon

Updated 2003-11-16




Ulcerative proctitis? IBS? Arthritis?

Spike - redfrog24@msn.com

I just woke up on January 4th this year and found it very painful to sit and had to reposition my sitting a lot. The only thing I could think of that caused it was 3 days prior to having this problem, I played cards all weekend and sat on the floor to do so, but since that causes back pain, I used a pillow. I never had the pain until 3 days after. I didn't fall or anything.

I made an appointment to go see my doctor that week and when I went to see him, he prescribed me pain medicine and sent me on my way. I waited a week and the pain got worse. I did research on the computer and coccydynia was in the question. I went back to my doctor and asked him what could be wrong and he would beat around the bush and I asked him could it be coccydynia and he said yes that's what it sounded like and told me to go see a therapist.

I went to a bone specialist and he done X-rays and made me jump in place and said he didn't know what was wrong because the results were normal besides painful. Later on I went to therapy and did it for 2 weeks and found no results, as a matter of fact the pain was worse. I tried going to a chiropractor and he found one of my legs was shorter than the other therefore correcting it.

The pain carried on and I went to see a proctologist and she had an MRI done which came back normal. She done a rectal exam and a colonoscopy and found that I have ulcerative proctitis and IBS and put me on Flagyl 500 mg, 1 tab 3x a day and Pentasa 250 mg, 4 capsules 4x a day and another medicine I can't remember. Two weeks later I had to go back for a checkup to see if I had relief. I went to the bathroom just fine with all that medicine but the pain continued.

I've been to lots more doctors after that and the last one thinks I may have that crippling arthritis and gave me Vioxx 25 to take 2 tabs once a day. The Vioxx seemed to help about 50% of my pain but it also made me sick. I'm now supposed to go see a neurologist in the process but I haven't been yet. I don't know if it is arthritis yet, but maybe soon I can find out. The last doctor I saw said that many women that have babies naturally can develop it from straining so much and some just get tailbone pain for just having babies. They don't know the cause yet.

Updated 2003-09-07




I can't sit and I'm at my wit's end

Stacy

I am a 40 year old social worker from Kentucky. I have worked as a social worker in several states and have always done a very good job. I have never been sick for any length of time nor did I miss a lot of work. Until I got hurt. In 1998 I was knocked down by a foster child. My back hurt. I stayed down for a few days but I was busy with work and my own children.

Several weeks later, when I was not completely recovered from the fall, a 16 year old girl ran a red light and hit me. My back really "went out", I mean I couldn't move without feeling the most intense pain. I couldn't move. I spent 6 weeks off from work and the next year recovering. I was given spine blocks and pain medication. After about a year the pain went away. I went back to my life. I worked, exercised, drove my children around, and travelled with my family.

On December 28 2000 while sitting in traffic during a heavy snow, a truck hit me from behind. Once again my back went out. But I rebounded really fast. I went to physical therapy and worked really hard at home. I was not going to let this accident cost me another year. I was back to work within 6 weeks. I sometimes felt some really intense pain so I did agree to the spine blocks again. Things got back to normal. Then one day, out of the blue, as I bent down to pick up some clothes for a foster child I heard a "pop". My legs went out from under me and I fell on my behind. I couldn't move. Another social worker was with me and somehow between her and the foster mother I got into my van. The other worker drove me home and I refused to sit down. I felt that if I act down I wouldn't be able to get back up. I walked around the house trying to shake this off. My legs felt numb and I felt like I had pins in my big toe. I was taken to the ER where a new MRI was done. I have problems in 5 areas of my low back. The discs at level 4, 4/5, 3, 3/4, and SI1 all have problems. I also have some really serious nerve damage.

I once again worked really hard on physical therapy. But I couldn't shake it. I could work but then I didn't have a home life. When I stayed home from work and enjoyed my family things fell apart at work. I took pain medication at night so I could sleep. But refused to take anything during the day. I did everything the doctors told me to do. I had spine shots, blocks, disc-grams, and finally in May of 2002 I agreed to a IDET (Intra-Discal Electrothermal Annuloplasty). After the IDET I really felt great. I was getting around enjoying my family and looking forward to going back to work. Then about a month after the IDET my tailbone started hurting. My back sometimes hurts but the real pain is in my tailbone. At first it I thought that I just wasn't used to sitting. We would go to our son's swim meets, and if we had to travel my tailbone would really hurt when I got home. Then by the end of the summer I couldn't sit through a meet. I talked with my doctor about this and he didn't act like it was anything to worry about. I asked if it was possible to have a tumor on my tail bone and he said no.

In September I was so bored at home and my tailbone hurt so much I began walking all the time. My back got stronger and I asked to be returned to work. The doctor agreed to part time. The first month I did OK but when I got home my tailbone would hurt but I could lay down or go for a walk the pain would still be there but not as intense. Then it kept getting worse and worse. Since the beginning of December I have not worked a full half day. I can't sit for more then a couple of minutes and if I stand my feet go numb.

I have talked with my doctor and they don't seem to listen. I am at my wit's end. I can't do anything with my family, I am depressed and can't get along with either of my children. My house is always a wreck. My husband travels and when he gets in at night he doesn't feel like cleaning.. I am losing my mind. The doctors gave me the impression that this was all in my head. I am very very glad that I decided to look on the internet for tailbone problems and I found this site. I have printed the definition and causes of Coccydynia. I plan on taking this information to my doctor the next time I go and if he doesn't help I will just keep looking for someone who understands this problem.

Updated 2003-01-05




Pain disappears when buttocks are separated

Stefan

Original posting, 2003-11-16:

I've had pain when sitting for three years now, growing worse all the time. I've had 5-6 cortisone shots without any permanent relief. All the time I've been under the impression that the pain comes from pressure on my tailbone, but now I'm not sure. Last week when it was so bad that I could hardly sit at all, I by chance found out that I have pain when my buttocks are pressed together and no pain when they're separated. By "pulling" my buttocks apart when sitting down I've been able to sit without problems for the past week, even in soft chairs. My doctor thinks that problem is in one of the ligaments that attach to the tailbone and that for some reason this ligament is affected when my buttocks are pushed together.

Does anyone have any similar experiences? I'm still trying to understand how my problem works and hope that someone can help me.

Update, 2004-11-21:

In the past year my tailbone situation has stopped getting worse. I've visited Dr. Maigne in Paris and he diagnosed me with a hyper-mobile coccyx. Understanding the reason for my pain has helped me to avoid triggering it, and that has kept it from getting worse. I've also been able to find/create seats that make it possible to sit throughout the day at work (see below, made from the back of a cheap IKEA chair), or during long car travels. I still have to do the funny procedure of pulling my buttocks apart when sitting down though, as my buttocks seem to be what pushes my coccyx out of place when sitting.

What is my biggest problem now is that I still can't sleep on my back. When in Paris I also met with professor Doursounian, to discuss a possible surgery, and he seemed to find it strange that laying on my back could cause pain. From what I've been able to gather from stories on this site, it seems I'm not the only one but it would be nice to have that confirmed. As my shoulders have gotten painful from sleeping on my side all the time, I'm kind of frustrated and getting more and more ready for surgery. Dr. Maigne has found me to be a good candidate for surgery, but professor Doursounian would rather wait and see. It seemed to bother him a bit that I didn't yet have a statement saying that my expenses would be paid for, even though I said I'd cough up the money myself if I had to.

seat that curves down at the back

Update, 2011-02-13:

I had my coccyx removed yesterday morning. After years of coccyx pain which didn't improve, I got to see Dr Tycho Tullberg at Stockholm Spine Center (see Doctors and specialists in Sweden). He seems to be the only doctor in Sweden to perform coccygectomy currently. He examined me and came to the conclusion that surgery could help, so here I am three months later and 24 hours after surgery. Still at the hospital, but I am being released this morning. Tycho Tullberg and the clinic in general has been a very good experience, and I can highly recommend them.

I'm doing very well, and was able to go for a short walk outdoors only hours after surgery, and I can sit already. The best right now seems to be a tall chair similar to a bar stool, with a wooden seat without any cushion. While I did sit in a soft arm chair and watched TV for 2.5 hours last night, that was more painful and I had to wiggle left and right, and stand up every now and then.

I'm on the paracetamol and codeine combo pill, and don't feel any pain at all when typing this, sitting on that tall bar stool. Sleeping on my back last night did cause pain, but not unbearable and it was OK for a few hours before I had to roll over and lie on my stomach.


Today I'm two days post-op, and I haven't taken any pain killers since last night. I don't have any general pain, and can sit without problems on hard chairs, especially taller chairs which let my pelvis have a more relaxed angle. Softer chairs put more pressure on the wound and are less comfortable. I can only take a few minutes before having to stand up or move to a harder chair. The worst thing for me is to stand up after sitting for some time, but that pain goes away very quickly. Bending down to pick something up from the floor is also painful.

I've been shovelling snow and took a long walk in snowy Stockholm, without any real pain. I actually felt better after the walk, with less stiffness. I have a feeling that sleeping on my back will still be a bit painful though, so I plan to take two of the paracetamol+codeine combo pills tonight.

Update, 2011-02-20:

I'm 8 days post-op today, and have been in much less pain that I thought I would be. After leaving the hospital the day after surgery I've only taken painkillers on a few occasions. I've even been able to work since the third day after surgery, about 5-6 hours per day. My job allows me a great deal of freedom and I can mix sitting with standing and walking around. I made the mistake one day to wear slightly tighter pants, and that increased pain quite a bit. As loose as possible seems to be the way to go, and the pants need to be cut to be loose when sitting.

What I find a bit odd is that while soreness and stiffness have decreased significantly, I feel more of the sharp pain from the wound today than I did in the beginning. Maybe that's a natural part in healing, or maybe the stitches becoming tighter. The "old" pain seems to be gone though, so I really hope I will get well.

The one thing I can really recommend is to get a bean bag. I got myself a very large one that I can stretch out on. It's easy to find different comfortable positions and for me the pain goes away completely when I'm in it. There are other brands (Fatboy, Sacco) but Smoothy is very reasonably priced.

Update, 2012-07-22:

I'm just about 100% well now, but needed physiotherapy to recover fully after the surgery. Three months post-surgery I was making such quick progress that I thought I'd be fully recovered by six months. However, my pain actually got worse again and six months post-surgery my butt was really sore. I didn't have the same sharp pain as before surgery, but a more dull type of pain.

After a while I figured out that it came from some type of muscle cramps, and pressing the muscles around the coccyx base made them relax. As this only gave temporary relief I went to a physiotherapist who said that it's not uncommon for muscles to get a bit confused after surgery, causing an imbalance where some muscles won't work at all while others work too hard, which causes pain. He gave me some exercises for my pelvic muscles (same type of exercise which help people with incontinence) and they worked wonders.

It took a few weeks of exercise, but now I'm almost pain free and can sit for just about any length of time. I continue doing some exercise to make sure the muscles stay relaxed.




In need of HELP

Steph - stefina@msn.com

I recently lost 151 pounds and I've been gradually having tailbone pain. I think it is due to losing the excess "padding" to sit on! It is very painful to sit for any length of time and I cannot lie on my back for any length of time without it causing me pain. I've seen a couple of doctors for this and no help from them at all. They claim there is nothing to do for it.

How come I keep reading about all these people getting their coccyx removed but when I go see the Dr. they treat me as if I'm crazy?? Please help. Anyone can email me.

Thank you so much!

Steph

Updated 2003-05-25




Pain came and went and came back again

Sue Allen - hugh.sue@btopenworld.com

I have been in pain since September last year. It went away for a while as I thought I must have pulled a muscle and it would gradually heal itself. I then had a recurrence a few months later and then another a few months later.

I have had the doctor examine my back passage and found no problems, had lots of blood tests and then an x-ray and still no diagnosis. I went to the doctors last week yet again because I was just in so much pain! The doctor diagnosed coccydynia and prescribed yet again coproxamol and Voltarol (Diclofenac sodium). The Voltarol does not help and I hate taking the strong painkillers but find myself in so much pain that I have no choice.

I was so pleased to find this site as I thought like many that I must be the only one in the world suffering this awful pain and no one listening to me! I will now at least have the peace of mind I am not on my own!

Sue Allen

Updated 2003-07-06




Surgery to remove tissue caused a fistula

Susan from Atlanta - SSchroeder@MARCUSMILLICHAP.com

Hi everyone. I am new to this group. I'm still trying to figure out how it works. But, here's my story. Before that, I just want to say that I am totally amazed how many people have gone through the same thing or very similar things as I have been through. I thought I was the only one to go through this until I found several websites. I wish you all well and a speedy recovery! Here's my story.......

Sept. 2000, I had 2 sebaceous cysts removed off my tailbone. Healed within 5 weeks.

Sept. 2002, Started experiencing throbbing pains in my tailbone. Automatically assumed that I had another cyst. Went to the doctor and they injected cortisone in the area. The pain went away for about a week. Then the same excruciating pain came back. Went to the doctor again and he sent me to a General Surgeon that decided to go ahead and do surgery.

Surgery was done Nov. 27, 2002. I came out of surgery and I was told by the nurse that the doctor removed the pilonidal cyst. The doctor told my family that he only removed a large piece of tissue and didn't see a cyst. What he failed to tell me was the huge hole he left in me when he was finished. Nonetheless, the surgery was a breeze for the first day after surgery. I had steri-strips over the incision. I was instructed to leave the strips alone and they would come off in 3-4 days. By the time I got home, they were saturated in blood and they came off. My incision immediately popped open. I called the doctor and he said not to worry about it. Well, every time I sat down, my incision would blow air out and when I would sit, it would suck air in. I went to my post-op appointment, and the doctor decided to put stitches in my incision. He told me it would just have to heal. In the meantime, my pain is growing more and more intense. I was told I needed to go to the pain clinic. Well, the next week the sutures were removed and my incision popped right back open. The doctor said it would just have to heal from the inside out. After about a month, I became angry with my doctor because this air sucking and blowing was driving me crazy along with the pain. And, the doctor did absolutely nothing.

I went to an orthopedic doctor thinking my tailbone was all out of wack! One x-ray showed the next problem I had to attack. I had a huge tunnel going from the opening of my incision all the way through my colon. I was immediately sent to a Colon and Rectal Surgeon. I was diagnosed with a fistula [an abnormal pathway developing between adjoining organs or tissues, or leading to the exterior of the body] and was told it would never ever heal without opening the tunnel and letting it heal from the inside out. Surgery was scheduled for New Year's Eve. Surgery lasted for about 1-1/2 hours. The fistula was opened from the previous incision all the way down around the rectum. The fistula actually went through the sphincter muscle. So, they were unable to do anything about that except put a C-Ton clamp in and tighten it every so often (TALK ABOUT PAIN, PAIN, PAIN) It hurt to put pressure on my toes, much less lift my legs to walk. You don't realize how much you use those muscles until someone starts tampering with them.

Anyways, to make a very long story, a little shorter… My fistula was about 6-7 inches long and about 5 inches deep. To this date, 5 months later, it is not completely healed. I went to the doctor yesterday, and I have another fistula. In addition, I found out that I have to have surgery again and they are doing some kind of flap surgery which will require a 3-5 day hospital stay, which will take place in about 3-4 weeks.

The reason for the fistula is the cyst on the end of my tailbone ended up with a staph infection that just remained dormant and localized. When it decided to grow out, it destroyed all the surrounding tissue and just kept going and going.

Just wanted to share my story. I'm glad I don't feel alone anymore. The doctor tells me that hopefully this flap surgery will cure my tailbone pain (hopefully). Otherwise, I will have to have my tailbone removed.

Thanks for reading. Take care and I will keep everyone posted.

Susan from Atlanta

Updated 2003-05-18




What can I do now?

Susan - Twinky711@aol.com

I had an injury at work with the lower back and tailbone. I've been to 8 doctors and none can tell what's wrong. Other than its L-5, S-1. I've under lots of medication. And nothing is working. I still can't stand for long periods or sit for long periods of time. I walk everyday. Quit smoking. Have had an MRI plus X-Rays. Even a EPI, steriod shots in the back, Physical therapy.

What is there. When I try to explain to all the doctors I've seen, its like someone is putting pressure on my tailbone. Pushing my spine into my tailbone.

What can I do now? Can you tell me.

Thank you

Susan

Updated 2003-06-29




Tried everything except surgery

Sylvia - Jonsyl66@aol.com

I am retired woman in my sixties and have been in horrible pain for the past twelve years. I fell while walking down a wheelchair ramp. I landed flat of my back side. I was told that it took a long time for a tailbone injury to heal so I waited for a year before going to a doctor. My first pain doctor really tried to help me with nerve blocks and the freezing sessions. Nothing she did helped and she died so I had to change doctors.

The next pain doctor did a nerve block, and when I got up my legs went out from under me, so I was sent home in a wheelchair. I was told I would be ok in about six hours. Didn't happen and I got a kidney infection, which went into septic shock. I had a heart attack and was in the hospital 37 days.

Needless to say, I changed doctors and a morphine pump was inserted in my stomach. I had it for two and a half years . I ended up in a hospital, not knowing who I was or where I was. I ended up in a rehab hospital for two months. I had to be detoxed before they could remove the pump (due to bringing the dosage down).

I have tried manipulations and acupuncture, physical therapy which did not help. I have had several MRIs. I am trying to get my tailbone removed. All the doctors I have been to do not recommend this.

Does anyone out there have anything else to throw at me? Thanks for listening to me.

Best, Sylvia

Updated 2003-10-12




Huge pain

Tasha - bunnygirlwhatever@hotmail.com

My name is Tasha and I am 14 years old (if you can believe it) and one day I started to have this little pain near my tail bone, I thought it was probably nothing, so I didn't do anything about it and I didn't tell my parents about it. But it kept on getting worse as the months went on and I went to the doctor and I got x-rays at the hospital, they found nothing. My doctor just said to do an exercise called pilates. So I did that, but it didn't help at all.

As it got worse it got harder to sit down and stand up, right now I am on my knees typing because it hurts too much to sit down. My mom found a site about my pain and she and I both think that I have coccydynia. I have all of the symptoms and I have read some of the other e-mails about people getting coccydynia, and I am kind of glad (no offence) that lots of other people have it too, because I was just scared out of my mind that I might have something that not many people have.

In one of the e-mails, I read that you should go to an ORTHOPEDIC SPECIALIST so I am intending to do so. Also I read about a coccyx cushion that is suppose to help you sit down. I don't really know if that would work, but I am definitely going to tell my mom to contact an ORTHOPEDIC SPECIALIST. Whatever it takes to get rid of this excruciating pain. I don't care, I just want it gone.

Updated 2003-02-02




Need some help badly

Tim Naus - cathy.minor@sbcglobal.net

I'm in severe PAIN and I need some help badly. They say I have a right angle take off of the coccyx. They say I have severe coccydynia.

This all happened 7 years ago. I fell at work, on concrete. Every doctor I go to seems like they want nothing to do with me.

I sure hope someone can HELP me. I'm going to give my phone number too (330) 866 2521 (USA).

Thank you Tim Naus

Updated 2003-08-24




Fully recovered after 3 months of painful coccydynia

Tony Ryan - apr@totalise.co.uk

I just wanted to let people know that I too suffered from quite painful coccydynia for a few months, and often thought it would never abate, but I'm glad to be able to say that I am now OK.

I started with the pain in July (03) (cause unknown - it just started) and had it quite bad for a few months. I then started taking a cox 2 inhibitor anti-inflammatory drug (Reflolux, or something similar). This has less side effects than the normal NSAIDS. After about 10 days taking these tablets I was virtually pain free.

For some time I just thought that once I stopped taking the tablets the pain would return as bad as ever. However It's been nearly 3 weeks now since I finished the course and my problem has virtually disappeared. I get the odd mild twinge now and again but I'll be very happy if things stay as they are.

If anyone reading this feel as bad (or worse) than I did I'm sure you'll be wondering (as I did) if it'll ever clear up. I hope my experience might give you some hope that, no matter how bad it is now, there is a (fairly good - so I hear) chance that you'll recover fully within time.

Best wishes.

Tony Ryan

Updated 2003-11-23




Sudden pain in the night

VB - bnoo@yahoo.com

For the last years (I don't remember when it started) I have had sudden tail bone attacks. Mostly it happens at night time and it wakes me up. Pain starts, builds up in intensity (it really really hurts), continues for about 10-15 minutes and than gradually goes away.

Sometimes I have the feeling that I need to have bowel movement or pass gas but it doesn't happen.

I noticed that if I put something warm on my back right at the beginning of an attack it sometime help to prevent it.

It doesn't happen very often so far, but when it comes I wish I had something to help me to get relief immediately.

I'm 42-year-old male and never went to the doctor re. this issue so maybe I should. Does anyone have the similar symptoms?

Thanks

Updated 2003-07-19




Injection worked!

Vicki - Sofatato@aol.com

I suffered with tailbone pain for months until it got so bad I needed vicodin! My Doctor sent me to the spine institute and I received an injection. The procedure was done at the hospital and the doctor used ultrasound to locate the correct place for the injection. He told me it might work for 3 days, 3 months or even 3 years - there's no guarantee. Well, that was last June (8 months ago) and just now the pain has come back.

In my opinion, IT WORKED!!! I had NO pain at all for 8 months.

Now that it's back (came back over the course of 2 weeks), I'm scheduled for another injection. I'm hoping this one will last at least as long as the first and hopefully longer.

Just so you know, the pain after the injection got a little worse for a few days and then, it was GONE!

So, I'd recommend the injection.

Vicki in Phoenix.

Updated 2003-03-16




Happy ending from nerve stimulator

Wes Harper - wharper@santeccorporation.com

I want to pass along a happy ending to my story of tailbone pain.

My tailbone pain just started for no apparent reason three years ago. I went to a series of seven doctors who did multiple x-rays, MRI's and many other tests. Nothing appeared to wrong with the tailbone. I tried exercises, pain medications, acupuncture, and every thing else anyone suggested. Nothing worked.

I finally ended up at pain management center in Colorado Springs and Dr. John Nelson. After trying a couple of more things, I had a ANS nerve stimulator implanted. Finally something that worked. I've had it in four weeks now and am able to sit on chairs for hours that I could only stay on for a few minutes before.

Hope this helps someone else out there.

Wes Harper

Updated 2003-06-15




Tailbone had done a U-turn to point outwards

Yvonne - ynantais@nc.rr.com

My fifteen-year-old daughter suffered for a year with tailbone pain and the future was looking grim, as no one could figure out what was wrong. From your website I found the information about Dr. Leon Dickerson at Charlotte Orthopaedic Specialists in North Carolina. No one here in Raleigh could help my daughter, including a doctor at Duke University, who was quite adamantly against surgery but could offer no other help than a referral to a pain clinic. We travelled on my daughter's spring break last April and met Dr. Dickerson. He inspired us with great confidence and saw things on the x-ray that were not apparent to anyone else. We scheduled surgery for early June and Dr. Dickerson removed my daughter's tailbone completely. As it turned out, her tailbone had done a complete U-turn and begun to turn outward instead of inward. It had just finally grown to the point where she was sitting on the tip and irritating it. The resultant inflammation caused her great pain and limited her movement greatly. She had to give up marching band and softball and was becoming very depressed.

Seven months later, my daughter is nearly 100 percent well. She was able to march a snare drum in the Christmas parade and is looking forward to softball season in March. She now only experiences mild discomfort from long periods of sitting. But then so do I! So her father and I feel that she was completely cured. Whatever the future problems or weaknesses that she may have, and the doctor expects none, we are very sure we made the right decision for a young woman whose life was being ruined by pain.

I have sent a Christmas card to Dr. Dickerson thanking him for his good work, but I would never have found him if it were not for your website and the information submitted there. I would have travelled anywhere to find help for my daughter, but wouldn't have known where to start on my own! No doctor here knew of anyone experienced in this surgery.

I realize my daughter's experience is different from many whose pain is a result of injury, and she healed well and quickly in part because of her youth. But if any person visiting your website has reached a point where they are considering a surgical option for their pain, I can only recommend a consult with Dr. Leon Dickerson in Charlotte, North Carolina. We are forever indebted to him for his care of our daughter, and to you for making this valuable information available to us. Thank you.

Updated 2003-01-19

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