Personal experiences of coccydynia and treatment from 1999




Coccyx removed, best thing I've done in a long time

Carolyn in Canada

I had my coccyx removed on 27th July 1999 and I think it was the best thing I have done in a long time.

Here is my experience if anyone is concerned about having the operation.

I broke my tailbone when I fell May 24th, 1998. What followed was plenty of painkillers, bonescans, catscans, cortisone shots and an awful lot of uncertainty. It didn't seem like any of the doctors or specialists knew much about the coccyx. After seeing one orthopedic surgeon, I saw another and finally he knew what he was talking about. I also had discovered this web site and was able to gain so much knowledge... thank you!

Dr. Bernard Woolford (see Doctors and specialists in Canada) performed the operation.

I have healed well. I stayed in the hospital for 3 days and was up and around almost immediately... moving slowly mind you, but still able to walk. I mostly layed on my side but was not able to sit like a normal human being... still to this day I can't sit properly. I curl my left leg up and under me as a cushion. My wound took about 2 weeks to heal... the stitches fell out on their own--- thank God! I was taking Tylenol 3's for the pain but I was having a horrible time with constipation, so after about a week I switched to Advil which seemed to help a bit. Since then, I have found an anti inflammatory that does not cause constipation.... it's called CELEBREX. It's the best one yet!

Right after the operation I felt pain but it wasn't excruciating. The pain was not in the coccyx area. The wound itself obviously causes discomfort .. but the pain I felt most.. and still do, is to the muscle in the cheeks of my butt! I am in physiotherapy right now and the goal is to stretch those muscles and relax them. It's been explained to me that for a year and half (while I suffered with coccydynia) , I protected the area and clenched up. Now I have to relax the area. I'm walking slowly on the treadmill, stretching and they are also using an ultrasound treatment on me... it seems to be working but I have a long way to go to be pain free. I have just started to drive my car again. Once a day and not too far with a big cushion. It smarts.. but at least I'm mobile!

I believe that my whole ordeal is coming to a close. After fighting with the pain for so long, I finally did the right thing and conquered the problem. If anyone has exhausted all of their resources and is faced with the decision to have the coccyx removed ----- do it and get on with your life! I have taken 2 months off from work-- if you are able to do so, take the time. One month was out of the question.. 2 months allows you to have a head start on the healing process.

Jon, thanks for the web site and your experiences. I found that whenever I felt something different, I would go to your personal experience and see if you felt it too. It was a big help. Take care.

Updated 1999-09-18




Coccyx pain after spinal x-ray with contrast fluid

Anonymous

About 5 years ago I had some back problems. My right leg felt dead. Sometimes when I stood up out of a chair, I fell back due to a kind of shock. I decided to go to a doctor. The neurologist did an examination; measured when an electrical pulse, given at my leg, arrived at my head; measured muscle activity with a needle in the muscle of my upper leg; made an x-ray of my spine with help of contrast fluid. (March 1994) The diagnosis was: an unstable discus intevertebralis.

After the x-ray was done I had to lie down, flat, for 8 hours. This because a hole was made in my spine, and that had to close again. I think it went wrong at that point.

Afterwards, days later, I felt very dizzy. I had to lie down immediately. Then the dizziness was over. I remember I stayed home for a while. Some time later, I don't know exactly when anymore, I stood up one morning and I couldn't bend over. I had to get out of bed as horizontal as possible. When I bent my head forward, it hurt in my spine and coccyx. It was after I had to on a solid wooden chair at my work for two weeks. Later I could bend again, but the pain in my coccyx stayed.

I went to my neurologist, but he simply said that there was no cure.......the *******.

Later I went to my family doctor (GP), and he told me what it was; coccygodynia!

He gave me an injection and the pain was gone. I felt fantastic and was amazed that the solution was so simple. A little bit of pain was left, but you could easily live with that. During months the pain level rose again and when it hurt too much I received a new injection. This went on for several years.

In winter 1998/1999 I met a otolaryngologist. He knew about coccygodynia, and told me that the injections I got could be harmful eventually. So I decided to try another way: physiotherapy. The physiotherapist I went knew about coccygodynia. He once (maybe more) treated a woman.

This is what he does:

He searches for a painful spot and presses at that spot, like a massage. When the pain disappears, he searches for another spot, and so on. This lasts for about 20 minutes. Afterwards he treats my coccyx with ultrasound, pulsations with a frequency of 1 MHz. Sometimes he has to reduce the power when it gets too painful. This was a very strange kind of pain.

After about 20 treatments most of the pain was gone. There was one spot that still hurt, namely the most lower point of my coccyx. That was a point he couldn't reach. You know what I mean... I treated that area myself.

So it was not over yet, driving my motor or car, or even sit was still painful. I decided to get an injection from my house doctor.

He gave it at the wrong spot, so it didn't help. This was about July 1999. Strange enough after I had my vacation (2 weeks) it was much better; about 99% I guess. But when I sit for a longer time it doesn't hurt, but it feels like it's burning.

But I feel that you have to be very careful, even at a level of 99%

Updated 1999-12-01




My pain

Molly Gillogly Azar orenmoll@pacific.net.sg

This site is interesting. I wish I had seen one like this in 1996 before I had my tailbone removed.

My pain started during my 5th month of pregnancy with my first child. (I think I injured my tailbone while sledding when I was 13). As usual, no doctor took me seriously. My delivery was awful. The baby had a hard time getting through the birth canal because the coccyx was too bent to allow his head to get through. (I am an American living abroad and was living in Jakarta at the time but gave birth in Singapore). Anyhow, after the birth it hurt just the same as before. I thought that the baby was sitting funny and with him out I'd get some relief. No chance. It hurt like hell to breastfeed the baby sitting down, etc. etc. I was quite depressed about it. It was not a way to welcome a child into this world. I tried chiropractors, physical therapy, reflexology, and accupunture. Nothing worked. After 8 months I saw a specialist in New York who barely examined me and ordered a bone scan. My xrays showed a "bent coccyx." Then I saw a pain specialist in Chicago who gave me steroids. They helped for a while. However, about 3 months afterwards, I started to get a squishy inflamed feeling everytime I sat down. Almost like there was fluid collecting in my anus region.

I was back in Singapore (I had moved there in 1996) and saw my gynecologist who referred me to an insensitive orthopedic *****. He didn't even exam me and told me that I just better get over this thing. (I wanted to have another baby but the thought of using a doughnut-hole cushion the entire pregnancy and possible complications during delivery was too much to bare!) Nevertheless, I persevered and found a very nice pain specialist who believed my story and gave me plenty of tissues to clear up my tears. (I felt that up until then the cultural differences were hindering effective treatment. It was terrible being a foreigner with severe pain and no one to talk to.) The Singaporean pain doctor did a lot of research on Med-line and was optimistic about surgery. He got a surgeon to reluctantly agree. The surgeon really didn't want to perform the operation and I think had only performed one such operation before.

I felt no different after the operation. In fact, I didn't feel much pain resulting from the operation. Nevertheless, I got pregnant again and felt very little pain during the pregnancy and during delivery. It was a very positive experience. However, 6 weeks after delivery, I got that swelling feeling and more and more pain. I can't say that the pain is the same as before the operation, but I still get a "squishy" feeling when I sit down and sometimes a "crunching" sound. The doctors in Singapore say that is because I am now sitting on the soft tissue of my rectum. They say that because I have no tailbone to protect the rectum I am having pain in my rectum. Hmm. Also, I tend to get a burning sensation sometimes when I exercise or squeeze my buttocks together. Yoga helps. I think it firms up the muscles and keeps everything tight.

I went back to my pain specialist in Chicago after the birth of my second child and he couldn't explain my pain. He gave me steroids which made the pain worse.

Perhaps I should have had the surgery performed in the U.S. by a doctor who had done more of these types of things.

Can anyone explain this "rectum" problem? Are there others experiencing this after surgery? It has been three years since the surgery. Some days I feel quite sorry for myself and other days I'm just thankful that I have two sweet boys. Yeah, I've experienced more pain than the average person, but I do have a lot of other great things about my life. I really miss bike riding and being able to sit in any restaurant without pain.

Molly in Singapore

Updated 1999-07-26




After the fall...

mhodges@ixl.com

Nine months ago I fell in an airport gangway ramp, landing square into a metal rivet on my tailbone. I did nothing for four months thinking it was just bruised, but finally went to a GP, and then an orthopedic surgeon after I could barely sit or get up from a chair without the terrible pain we all know. I had to eliminate the "scooch"-- a sitting slide--from my movements, as it was always incredibly painful.

Under the care of the orthopedic surgeon we tried anti-inflammatory drugs, manual manipulation called an "adjustment," (it involves a glove), but had no luck. Eventually he administered a shot of cortisone to the area, injecting it directly into my tailbone area. The shot provided some relief after about 3-4 days, but the procedure was incredibly painful. I think he had to reposition the needle a few times to find the right spot for the medicine, and I felt every stab lying on his examination table.

That was in about April '99. That shot provided about 50-70% relief. I no longer winced when I got out of a chair; however, after prolonged sitting in the car, at movies or at work I'd still have pain. I was constantly siting on one side of my butt in an awkward pose, or slouching in chairs to avoid the irritating, painful angle that press on my coccyx. The worst was the constant popping I felt at the joint, sometimes simply from taking a deep breath while sitting.

I have since had another shot of cortisone. I figured if one shot provided half the relief I desired, another might cure the other half. My doctor was hesitant because the procedure had been so unpleasant before, but I wanted to try anything before surgery. He'd administered two shots on other patients and seem some improvement. Luckily this shot was much easier. It wasn't painless, but I think the relief I'd had from the first shot helped make that shot less painful.

The result: It doesn't seemed to have made too much difference. I'm not in pain every day, but those days that I sit for a long time there's still a nagging discomfort. Tighter fitting pants aggravate it certainly. Road trips are not unthinkable, but I bring a pillow "just in case" to place under my butt to raise my tailbone to a more comfortable angle.

I really don't want to live with this dull chronic pain. My doctor has said surgery is my next option, which sounds like a common suggestion, but I'm wary of having a surgery until I hear more about other's experiences. My doctor's done the procedure 4-6 times before and said he'll give me some references to call, so I can hear their stories, but this site has been very helpful already in that regard.

If anyone has suggestions, pass them on. He said I'll only need to take 4 or so days off work, plus a weekend; does that seem like a typical recovery period? How long does a wound take to heal? How does it affect your life while it's healing? (i.e. exercise, sex, using bathroom, showering, driving?) I'm 32 and mostly fit, so hope age will act in my favor. I'd appreciate any information, suggestions, or warnings. I'm tired of this and would like to end the pain, especially if it's just going to continue for years to come... thanks.

Updated 1999-08-02




Coccyx pain and tumour

Tami Ross, tross@rdg.boehringer-ingelheim.com

I have had pain in my coccyx for the past 18 months, and I believe it is due to childbirth. I have been to a chiropractor, done physical therapy (which only made it worse) and now am going to a pain center. They are going to try the semi-permanent nerve blocks as soon as they can get the procedure approved by my insurance company. I am desperately looking forward to relief. I have severe pain when I sit and when I sleep at night, but the pain never completely goes away.

Update, 1999 September 22.

I have had coccydynia for about 20 months now. I have tried the first step of a caudal block (the nerves on the top of the coccyx), but that did not relieve all the pain. I also had a shot of cortisone which did not provide ANY relief (actually made it worse). On Friday I am going to go for a second caudal block. This time they are going to try injecting both sets of nerves to see if that helps at all. I have also tried two medications to help me sleep at night, Ultram (which made me sick and feel like I had a hangover) and Vicoprofin (which made me feel like I was flying and completely out of contro). I am now going to ask for something else since neither of those medications worked appropriately. I have an appointment with a orthopedic surgeon today. He is going to set up an MRI just to make sure that nothing else besides the coccyx is causing the problem.

I am working with a pain center called The Comprehensive Pain & Headache Treatment Centers, LLC. They are located at Griffin Hospital in Derby, Connecticut. They are working with me but are slow at getting treatments scheduled.

Update: 1999 October 19

I just wanted to provide an update on my coccygeal pain. I went to an orthopedic doctor who told me I would have to live with the pain for the rest of my life. But, he did decide to send me to get an MRI just to make sure that the pain is not being caused by anything else. When I went to have the MRI the radiologist reading the films had me immediately go to get a CaT scan done.

They found a tumor on the S4 bone of the sacrum. It is 2.3 cm x 2.0 cm x 1.8 cm. So now I am going to have a biopsy done to determine if this is benign or malignant. I had x-rays done in April (6 months ago) that did not show any sign of this tumor. I am glad that I persisted by going from doctor to doctor until I found someone who took me seriously enough to have additional testing done.

My advice to everyone is that if you have pain for any length of time, get it checked out. I am sure that most everyone's coccydynia is NOT due to a tumor since it is very rare, but it is nice to be on the safe side. I wish everyone the best in their quest for a pain-free life!

Reply from Jon Miles:

Hi Tami, I'm so sorry to hear your news about the tumour. I do hope it's benign. It's a warning to everyone to make sure they push for the proper tests. Do let me know how you get on. Everyone will be wishing you well. I wish you good luck with all my heart. Jon

Update from Tami, January 18:

I just thought I would update you on my progress. I had surgery on November 23rd. They found the tumor was on my 4th sacrum (S4) which is right above the coccyx. Since the sacrum and coccyx are so close in relation to one another, it is difficult to tell if the pain was coming from one or the other. The doctors removed my sacrum from the S4 down and also removed my coccyx. Since the surgery, pain has decreased drastically. While I still have to take regular pain medications, the pain has decreased by more than 50%.

Unfortunately my tumor is malignant and was diagnosed as osteosarcoma. Osteosarcoma is generally known as a children's cancer or a cancer of the elderly. Since I am 29, and the tumor was not found in an extremity (arm or leg) my case is VERY RARE. I have now started chemotherapy but and doing well.

I just wanted to state that again, my case is rare, but it never hurts to convince your doctors to have an MRI just to rule out something like this if you have had pain for any length of time.

I wish everyone the best of luck finding relief for their pain. Please just remember along the road to a pain free life to take a look not only at the symptom of pain but try to determine the cause of that pain if at all possible!

Updated 1999-07-20




Questions before surgery

Monsi Hodgson monsihodgson@gmail.com

Posted 1999

I am preparing before surgery mentally and physically. I found a spine surgeon who told me that the pain I am experiencing is coming from an injured tail bone and that it will not go away. The alternative is removing the cause. I agreed to get this done. I have to schedule the surgery after I talk with my manager at work to get time off. I have a couple of problems. Maybe I can get some help or suggestions from those who had the surgery.

I have a very sensitive stomach which gets upset with medications, and I have history of ulcers. I am worried about this because I know after surgery I will need pain meds. I spoke with the surgeon about this, he suggested duragesic patches but this is really not good for post op treatment. Can anyone tell me of an effective pain killer which does not hurt the stomach. The diclofenac suppositories could be of help. I am trying to find out if they make them here in my town. Pharmacist is contacting people for me. Do this help with the post op pain?

Any suggestions will be appreciated. I am planning to ask for 4 weeks off work, I am praying that I can go back to work after that. I drive to work now 30 min. This is possible using a doughnut but after the ride I am very tender. I am thinking that I will feel tenderness after 4 weeks. I take Prilosec for ulcers almost always and carafate once in a while when the stomach is doing real bad. You can see that I will have to be extremely careful with what I take but I am sure not willing to put up with severe pain after surgery.,

Reply from Jon Miles:

The anesthetist who attended my operation told me that diclofenac was a good painkiller to take after this particular operation. As it is an NSAID, taking it for a long period can cause stomach ulcers in some people. You should ask your doctor about this, and maybe try to take it for a short time only. I have it under the brand name Voltarol, but when I searched on the internet I found a site with all the different brand names for diclofencac.

Reply from Rory Greenwell:

I would suggest anything with codeine in it. I found that Tylenol 3 worked well or even Tylenol 4. The Tylenol won't upset your tummy like NSAIDs and the codeine is very mild on the stomach too. The patches do work well, but won't do the incision any good at all. Once the incision is healed however I believe that the patches may just be the answer. Suppositories are probably your best bet for post-op.

Ask your boss for two months. .....you will be pushing it in only one. The first two weeks of this are excruciating, don't let anyone tell you that you'll be better in "no time ". Remember that you may not be able to drive for three months. Good luck!! I wish you all the best for a speedy and comfortable recovery.

Update from Monsi 1999-08-26, 3 months after surgery:

It has not been easy and, I am still suffering discomfort when I sit too long. I can drive my car for 30 min with a cushion under with no problem. The surgery was September 13, 1999. Almost three months in a few days.

My worst experience has been going back to work, and how the co-workers had responded to my coming back. I do not think I went back too soon because I was able to sit and stand whenever I need it to. I was able to do my work without difficulty. My co-workers try to get me sent back home because they accused me of not being able to do my work. This failed for them because it was proven to my boss that I was having no problem. I think that is sad how people react without sensitivities or compassion for others.

I have designed my own cushion for my driving. I can tell that if I had not done this I would not been able to drive to work. I have been working for the last six weeks back to full time work. It has been Ok. I know that I push myself to get well. I have been walking and swimming. I do laps. This is the best exercise that works for me. I love swimming and I been doing it for at least 20 years.

I am very thin and my doctor told me that it would help to gain some weight to pad my behind. I think this is funny because if you gain weight it may not go to your behind. I think for now I will use pillows.

I will be glad to help anyone with answering questions if I can regarding post surgery recovery. This will be from my own experience of course. This site has helped me so much and I am grateful that is there.

I still may take a Darvocet now and then if I get to hurting too much but is very seldom I do this. I have learned not to sit too long because this is what causes the discomfort. I went on a long trip for 4 hours and ignored the discomfort while sitting and I paid for it later on. I am still hurting some from that trip. I will not do it again. You can lie down when you travel.

Update, 2009-11-08

Since I last posted my update I had continued to have pain while sitting. I did use doughnut cushions for driving and some times found them helpful. For the past year this failed to help. Now I hurt all the time with chronic lower lumbar pain along with the sitting pain. It seems like my whole pelvic bone structure is broken because I hurt so much. The right side being worse than my left side.

I have been taking neurontin for a few years. Now they put me on Lyrica and have been using it for over a year. I am also taking ibuprofen when I needed or Hydrocodone when I can not tolerate the pain any more. I have been on diclofenac pills and baclofen for a few months and that seems to help the inflammation and the muscle spasms I get all over my sacral are. I am noticing that my hips are having problems also with pain like bursitis. I am getting older and the sitter pain is not the only one I deal with now.

I also use a TENS unit and that helps temporarily. I used to take amytriptiline at night but I found it to make me dizzy. I do not take as many medicines as before because I was having too many side effects, and not having good results.

I am seeking all kinds of medical help to see if they can take care of the pain. After 10 years and being 59 I have some problems with bulges in the L4-5 and L5-S1, facet Arthropathy, and bilateral L5 foraminal narrowing. All these may sound serious but appears to not be needing surgical corrections. I am grateful for this.

I am wondering if I should stop looking for a possible medical solution and just blame it all to the after effects of having my tailbone removed 10 years ago. I am of course in worse pain than before because my level of functioning has been greatly limited in this days. I am not working any more. I had to stop in 2002 related to health problems.

Monsi




Had coccyx removed a month ago - feeling great

Debra Hopkins - poaka@iname.com

I feel great I was operated on one month ago. My surgeon was Mr G Howie from the Remuera spinal unit in Auckland NZ. My story started a year and a half ago. I was at work and I bent down to pick up a small item. I did all the correct things bent my knees not my back.I thought the pain would go away even though it was quite accute, after all I am a fit somewhat sporty 33year old. I visited my g.p of 30yrs who rather dismissed my complaint, he gave me some anti inflammatory and pain killers and sent me back to work. thankfully I was sent to the company physio who took me a bit more seriously. After a lot of mucking about I was given x-rays, cortizone injections, physio with no positive results. I went for an MRI scan which did not show any thing a lot out of the ordinary.Thankfully Mr Howie decided to remove my coccyx. I now have it sitting in a jar at home. After he removed it he said it was very worn. for what reason I do not know, but you can trust I will be asking. The operation went very well, the only down side about it was the constipation three days after the operation which I cured myself with some diluted prune juice.I feel so well that I am going back to work on the 7th december. I have been mucking about in the garden, walking around the shops,walking the dog. People keep telling me how well i'm looking, i'm sure it's because the stress from my face has gone, now if we could only do something about the crows feet. The only minor pain I have is where I was cut open and that will be gone very soon. I feel positive and happy once again.who knows I might soon be having sex again-if I can convince my partner. I must be well to even be thinking of it. Dont lose another day of your life get someone to take you seriously.

I emailed Debra for more details, and this is her reply:

Hi Jon

I'm sorry for taking so long to reply. I am using my friends PC, as I dont own one.Also I have been flat out getting back my life, going out, painting my house, gardening, working and walking my Dog. I dont mind at all that you have put my posting on your web site. Any hope that I can give to people suffering will be worth it. I recomend that any one consulting a surgeon on removal of their coccyx ask how many they have removed, what the risks are and the success rate is.My surgeon told me how many per year he had done and that the only risk was a risk of inffection to the wound. He also said that in the last two years there had only been two people that had an inffection to the wound. He used a stitching method on me that was one long stitch, which is about four inches long on the inside of my buttock. It has healed very nicely and I hardly notice it now. In answer to your question on the ligaments, I really dont know. I do know that I can run, jump, skip and do the dance of joy. I will also be going back to Ballet in the New Year. The Op took about an hour .I would say that it took a good three weeks after the Op to sit down without a lot of pain. The surgeon recomended limited mobility for the first month. Which was the case but after that I kept feeling better every day and very hard to make me sit down and relax as I felt I had to make up for loss time. Good luck in finding a surgeon Jon, dont muck around any more get out there and find a really good one. You have wasted to much time already, whinge, bitch, moan let them see you dont want to live like this any longer.

All the best. Debra.

Updated 1999-06-01




Any Success stories?

jdgtx@webtv.net

Are there any success stories out there for people who have recovered from coccydynia? We need to hear these too so that we don't get discouraged.

Reply from Jon Miles:

It's a good point. The trouble is, if people have successful treatment, they don't go searching the internet for solutions, so we don't hear their stories. There are some exceptions, such as Debra and Geri.

To give some balance, here are stories I heard after I had this problem (I had never heard of anyone with it before then):

  1. A fellow patient at the Pain Clinic told me that she had had coccydynia years ago, and it was successfully treated with a corticosteroid injection and  it never came back.
  2. A woman at work had the same problem, and the injection, but it was not successful. She now sits on a ring cushion, and she has had some herbal treatments. Her pain has not gone, but it is better than it was and it is not so bad that she wants to try any other treatment.
  3. Some friends told me that a friend of theirs had had coccydynia, had her coccyx removed and was completely cured.
  4. A woman my wife met said that her father-in-law had had his coccyx removed with complete success.
  5. A nurse who was treating me told me that a friend of hers had fallen down stairs and had severe bruising of the coccyx. She had not had any specific treatment, but the pain had gone away in about 6 months.
  6. After riding a bike, a colleague of my wife's had pain on sitting. She went to her doctor who did not examine her properly. The pain went away after a couple of months.

So, five out of the six stories I heard among friends and acquaintances were successes. Any more from anyone else?

Reply from Tami Ross:

I just wanted to let you know that I have a friend who had coccydynia caused by an unknown factor. She had one shot of corticosteroid and has been completely pain free since then (about 3 years). I just had a shot this morning and hope to see good results soon.

More from Jon Miles:

A friend of my daughter's at university told her that she had had the problem for about a month, and it went away.

Another colleague of my wife's told me that if she rides a bike she gets pain that stops her sitting down for weeks.

A canoeing friend has a friend who damaged his coccyx. Apparently if you fall out of your kayak in white water, you're supposed to float feet first down the river avoiding the rocks until you can grab something. But your bottom hangs down, and his hit a submerged rock. He was in pain for some time, but my friend has now lost touch with him.

There's more of it about than you think!

Updated 1999-07-21




Another happy listener :-(

Darienne McAuley - roadsend@pipcom.com

I am not alone. I am still in pain, but I am not alone in this incredible thing which has wrecked havoc in my life.

My butt-related accident list:

I have had pain for just about one year now. Not excruciating, just there, bad, constantly, endlessly - except as you all note - when walking. It hurts now to sit here and type this. Standing makes me very tired. I do have two other diagnoses: fibromyalgia and spondylolisthesis in L4 & 5 because of severe degenerative arthritis in the apophyseal joint in the lower lumber spine (read from a slip of paper). My primary care physician first gave me the diagnosis of coccygodynia and says that the arthritis may be the explanation. So far I have been given an office rectal exam, x-rays (nothing show in the sacrum or coccyx); pelvic ultrasound, colonoscopy (thank God I do not have cancer - I had never worried about cancer, but at 2 am I did tend to somewhat), anorectal manometry - the strangest test I have ever had, but not too unpleasant - all checked out fine here. Nada.

I've tried chiropractic - nothing; massage - helps me keep going but nothing else; moist heat - helps at night but no difference; pain pills - how many can you take? I just don't bother anymore unless it is unbearable. Next week I try accupuncture.

I've read most of the website now and will try one suggested thing after another. Thanks for being there.

Darienne McAuley.

Lessening of pain levels

One major thing has changed in my battle with coccydynia. My naturopath doctor suggested that I change my eating habits radically. I was already a vegetarian, non-drinker, etc and wondered what I could give up. Answer: just about everything I loved to eat - mainly the Nightshades (tomatoes, eggplant, peppers of all kinds, potatoes, to name a few) and the Rue family (citrus fruits, etc), along with wheat - which is in almost everything- , chickpeas and various other things to numerous and painful to enumerate. It seems that the Nightshades and Rue family contain substances which exacerbate pain. Wheat goes because it is the most common food allergy and chickpeas because they are hard to digest. No more potato chickpea curry with tomatoes.

Well, the good news is that IT REALLY WORKS!! The pain level has subsided greatly. It's not gone, but it is so much lessened. And for that I am extremely grateful.

Darienne McAuley

Updated 1999-11-11




Hope and Cushions

From: Carlos Moraes - CMoraes@med.miami.edu

Hello Dear fellows from the planet Coccydynia,

It is very common to hear from people who have coccydynia for 4 months to one, two years. However, It is very rare to hear from someone that has it for 5 years of longer. I see this as a sign of hope, and that most cases get resolved sooner or later. I will take this opportunity to ask people benefiting from accessing Jon's page to make a pledge to send a message once they get better or cured. It is easy to forget about it once the pain is gone, but others would benefit from hearing about these experiences.

In a different note, I have a tip for sitting, particularly for driving. To me, sitting forward relieves the pain but I can not sit like that while driving. The other alternative was to force my left foot against the car so that my butt was slightly elevated. Great for the gluteus, but not very comfortable. Donut or wedge cushions do not work well for me. I found something that has made my driving much more comfortable, at least for mid distances. Go to the nearest windsurfing (watersports) store and buy a thick cylindrical pad used to protect boards when those go on the rack (on top of the car). These approximately 1.0 meter long pads usually go around the metal racks and are quite thick (the thicker the better). They cost about $10, and you would need only one. Now, don't put the pad on your rack as you will have to sit on it. Once you are in the driver's seat, slide the padded cylinder across the seat under your butt. In the beginning I would put it more towards my legs, but even when you sit on it, the coccyx stays without any pressure. It may also work for wheel chairs as someone asked recently.

Keep the spirits up, use your creativity to cope with this nonsense and remember that your health problems could always be worse!!

Cheers, Carlos Moraes, Miami

Reply:

All Coccydynia sufferers,

I read Carlos's E-mail and thought I'd write.

I have had a Coccydynia for about 2.5 years now, I've had my up's and downs with it along with various treatments. I don't think my condition is as severe as many of you as I can sit down on my cushion for some considerable time. I'm not in pain whilst sitting that comes later as I get up. I can usually massage the pain away (what people used to call having a square bum). Its more an annoyance than anything else, but at least I can get around.

I know from the manipulation I had under anesthetic that my coccyx is totally mobile in all directions and this is why I get the discomfort.

I have however realised over the past few months that I might possibly be getting better. So please, all of you out there don't give up, continue searching for treatments this includes alternative therapies as we as the more invasive ones.

Remember as well that our minds are also a very powerful healing device, it is so important to keep a positive outlook on our condition. We move towards what we think about, therefore lets keep it positive and move on.

Regards, Dick

Updated 1999-09-30




Had coccyx removed, had to wait 2 years to get partial relief of pain

Linsey - hellsbelle@rocketmail.com

In February 1994, I developed tailbone pain with no apparent cause, though x-rays did show a gap in the tailbone and some very small nodules on the bone. I had my part of my tailbone removed in May of that year. The surgery took only about 15 minutes--I wasn't even under for much longer than that. The way my orthopedic surgeon explained the partial removal procedure was: the tailbone pain is caused by excessive movement so the bone is removed from the "gap" (where the movement started) down, leaving the remaining, "unoffending" tailbone parts in place. The surgery was very minor, but the recovery long. I had a choice to do three days in the hospital or use the outpatient clinic. I used the outpatient clinic because I was a poor, uninsured grad student at the time. The outpatient clinic was a MISTAKE. You really need three days in the hospital, not because of any post-op risks, but because moving around is so difficult and the surgery can be a bit messy. I strongly encourage anyone considering the surgery to choose a hospital-stay option.

The surgery brought no relief for about the next 2 years. I was not devastated by the lack of results because the doctor had set my expectations appropriately. According to him, only 70% of patients benefit from the surgery, and medical science isn't sure why that is. So, I consider myself only to be unlucky.

I was very surprised to read that the surgery isn't common, and that people consider it dangerous. It wasn't represented to me that way. Possibly, university doctors perform the surgery more often. (I was treated at a med school) And I've heard that the medical census of the state of Florida (US) reports we have a lot more sports injuries. We can play outdoor sports year around, so we have more injuries than other states, among both local residents and tourists, especially tourists.

By 1996, I began to feel a bit better and could finally get more than 6 working hours out of a day, on a good day. I have personally tried every single therapy imaginable. I have to agree with the medical research that no treatment may well be as effective as any single method. Still, I personally take an aggressive position in looking for relief, pursuing whatever options are available. Except for the cost, it usually does no harm either to try to be one of people who is helped by (insert therapeutic remedy name here).

As I've gotten older and developed some very minor arthritis in my hands, the hands have become a good predictor of my most severe bouts of tailbone pain. In retrospect, I am surprised the doctors didn't try me on arthritis drugs before doing the surgery since I have a family history for arthritis. That is something you might look into if your family profile suggests arthritis.

Five years later, I don't feel that my surgery was dangerous, or that it was a total failure in spite of the continuing pain.

Updated 1999-03-13




Mobile coccyx from birth. Removal of coccyx cured headaches.

Geri - TTY4@aol.com

Last year I found out that I had a mobile coccyx, probably since birth. It was removed in June 1998. It was the absolute best thing that has ever happened to me.

I was also born with 3 fused neck vertebrae. The two problems, together, gave me severe head pain, for most of my life. I am not absolutely certain how the coccyx affected my head pain, but 75% of my head pain is now gone, now that the coccyx was removed. I believe that it might have caused ligament pain, which in turn caused muscle pain in my neck, which in turn caused nerve pain. I could feel my muscles tighten up before I got the severe head pain.

A Doctor did not help me figure this out, a Physical Therapist did. In fact, my General Practitioner told me to do nothing about the Mobile Coccyx. I ignored this advice, and went to an Orthopedic Doctor, who took it out. The Orthopedic Doctor was great, but he did not think that it was related to my head pain. After the surgery, he was a little more receptive to my ideas.

My story is unusual, but I am aware that there are many people who suffer from coccyx problems, and the Doctors do not remove it. I want to know why.

Before my orthopedic surgeon operated, he did not believe that I had lived with this my whole life, but after the operation I believe that he changed his mind. I had sat on this mobile coccyx my whole life, not really feeling the pain in the coccyx area---I only noticed the severe head pain. I did notice some low back pain, but relative to my head pain, it was nothing.

I am 43 years old. Suddenly 75% of my constant head pain is removed. It is truly amazing.

The pain that I felt from the surgery was similar to the pain I was already coping with, except that it was more constant.

I thought that I might warn you to avoid lifting heavy things for at least 6 months, after the surgery. I got ligament pain from lifting things, for a while. My Orthopedic did not really mention avoiding anything, after my 2 month check-up, but I think he should have. I also fell on my bottom, roller-skating, 3 months after the surgery. I was semi-conscious for about half an hour, and suffered worse pain than the surgery, for about 2 weeks.

Updated 1999-04-24




Tarlov's cysts

Robin

Dear Jon, I was so happy to find your website. It is such a relief to know I am not alone in this. It is hard for people to understand what we go through.

I am a 51 yr old mother of four. My coccyx started to bother me about 6 years ago. I do not remember injuring myself...it just started hurting. The pain increased, so I started on my journey to find relief. My general doctor made the initial diagnosis of coccyx pain and proceeded to scare me to death, telling me I would need steroid injections, and they were terribly painful. To avoid the shots, I then spent 3 months at physical therapy (useless) and 2 months of acupuncture (useless). I finally decided to get the shots, I was so desperate.

I went to a pain clinic, where they injected me. The shots did not hurt at all. I was so annoyed I had wasted so much time seeking painless alternatives. The steroids worked very well. I was FINALLY painfree!

However, about 9 months later the steroids wore off, and I got more injections. This has now gone on for 6 years. They last 6-9 months, but the pain always returns.

I went to a new doctor in October, and he was shocked that no one had suggested an x-ray or MRI in all this time. So I had an MRI which showed a normal coccyx, but very large Tarlov cysts. I was sent to a neurosurgeon who felt the large cysts were not related to the pain. I was sort of hoping they were. I am not sure this was a very good Dr., so I will get another opinion.

I did find one person with a similar condition on your website, but it was not resolved. So the dr. is treating this as coccydynia, and I received more shots. At this time, I have not received much relief. They say eventually the shots lose effectiveness. What next? This Dr. I am dealing with is just Ok. He wants to send me to an anethesiologist next. He is a D.O.

Thanks for "listening" I hope you have continued improvement from your surgery. Please post any more info you can. So I continue to avoid sitting too much. I hate complaining when so many people suffer from horrible diseases...

Updated 1999-12-24




Unknown cause of tailbone pain, unless rear-ending by automobile earlier caused it

Susan

Even though I work as a support staff member of a medical department at a teaching university in Canada, I had not come across the term "coccydynia" before. It has now become the most frequently-used word in my vocabulary these days.

More than four months ago, I started experiencing this pain for no apparent reason. My G.P. sent me for an x-ray of the coccyx, which showed two fractures. At that point, she sent me for a bone densitometry to see if I had osteoporosis (I am 48 years old.) I had normal thinning of the bone for my age. A subsequent x-ray and bone scan revealed there had not been a fracture to begin with (I understand that this is an awkward site to get a clear picture of) and so I am back to "square one".

I should mention that three months before the onset of this pain, I was rear-ended by an automobile and suffered a mild "whiplash", the effects of which I am still feeling. As this was the only trauma I had suffered at all, I did question my doctor about the possibility of some connection, but she didn't seem to think that the accident had anything to do with it.

She then referred me to a rheumatologist whom I thought would magically give me an answer to my problem. Not so. He seemed disinterested in my plight, never asking me those questions that I would have thought to be pertinent. After having me bend forward and backward, check my reflexes, and pressing down on areas around my hip joints, he declared that I didn't have arthritis. After offering no further investigations, he gave me a cortisone injection (Depo-Medrol) and prescribed a topical gel (5% Diclofenec) and told me he could give me another injection in about two months time.

I would like to find out the cause of this condition that has affected just about everything I do. After reading some of the personal stories you have posted, I can concur with most of their symptoms: intense pain when rising from the sitting position, intense pain when not sitting on my coccyx cushion (although that doesn't even help much after a few hours of sitting at my work computer), pain after lying down on my back for too long in bed, and feeling alternately depressed and irritable.

Maybe I just haven't give it enough time yet, but after hearing the stories of those who have had this pain for so many years, I feel that some investigation on my part may help to alleviate the condition sooner.

Updated 1999-06-05




Wheelchair cushion

Anonymous

My fiance has suffered a brain aneurysm and is currently in rehab. He is beginning to make very good progress after months of complications, pain and set backs (his aneurysm happened December 24/98 and he underwent 3 brain surgeries within seven days). One of the biggest problems he has been facing recently is his inability to tolerate his wheelchair for over an hour because of coccyx pain. He must be able to sit in his chair at least 5 hours to participate in a day program after his inpatient release. His therapists have tried various cushions to no avail. He does well when he sits on the edge of his hospital bed (it is a pressure relief air mattress).

Before I invest in a similar air cushion (these cost $300-400) that I'm not sure will work--- I wanted to see if anyone has had particular success with a specific kind of cushion. I found a variety of cushions on the internet with holes or spaces cut out that people claim work very well (for much less cost). Any suggestions from anyone would be appreciated.

Reply from Jon Miles:

People vary in what is most comfortable for them, so you will probably need to experiment. You can do this by buying foam and cutting it yourself, as described in the tip from a teacher. Also the wedge cushions and ring cushions given on the Coping page are much cheaper than the cushion you mention, so they are worth trying.

One problem with wheelchairs is that the seat is usually not rigid, and will curve down when you sit in it. This pushes the buttocks together, making the coccyx pain worse. I know of two solutions to this problem - the first is to put a rigid board underneath the cushion. The second is to buy a coccyx cushion which is curved underneath to compensate for the curve of the seat.

Updated 1999-09-11




Pain for 6 years. Worried about surgery

Anonymous (taken off net)

In 1989 my nine year old daughter was diagnosed with cancer. During the next 5 years we were making 500 mile round-trips to her treatment center. During the times that she was in the hospital she needed me to be right beside and therefore I sat for prolonged periods for the next several years. It was during this time that I started having pain in the coccyx area.

I lost my daughter to cancer in June of 94, and since this time have struggled not only with depression and grief, but also severe, burning pain that is concentrated in the coccyx. At this time I am trying to hold down a teaching position, be a mom and a wife...preferably the best that I can be. My remaining daughter is a cheerleader for several sports. This is her joy in life. I cannot even be there for her since this pain becomes unbearable if I sit in stadiums or on bleachers. Also, both of our parents and families live far enough away in other cities that I cannot even bear to ride in a car to visit them.

I went to a pain clinic and received an injection of Depo-Medrol but this was no help at all. If anything, it exaggerated the pain. The only other suggestion this clinic had was surgery to remove the bone and I have heard some terrible stories about this. I have lost so much of my life and would so much like to have some quality left.

I know from my experiences with my daughter's horrible pain that a medical person's chief concern is addiction, no matter how much the patient is having to go through. What a system! Are there any exceptions to this rule? Thanks for listening and I apologize for taking so much of your time.

Updated 1999-01-17




Fall last July. Trying physical therapy, painkillers.

Lois

I fell on my (slippery) dock in Maine last July and was diagnosed (first by a surgeon/family member, then by my internist) two months later. I took NSAIDs and received physical therapy. PT helped by strengthening supportive muscles and stretching the gluteus and piriformis muscles. But as soon as I stop exercising the pain returns. I have stopped wearing jeans (the seam tortures me when I sit) and I cannot drive my new car (Subaru Forester) because the seats feel so hard (fortunately we also have an old car, although I don't drive much because of the pain.) I work mostly at home- a self-employed, semi-retired 57 year-old female clinical psychologist, and I am fortunate in having control over my work hours. But I am at my desk a lot writing (at a laptop) and kneeling is not entirely satisfactory. The kneeling deskchair (Balans) I have used for years makes the pain worse.

Thirty years ago I spent two years nearly unable to sit down after an auto accident (in an old VW bug). I learned to stand at all the best places (concert halls, theatres, meetings in hospitals), and after a couple of years, I did get better. I suspect the current injury is worse because of residual damage from the old one.

Also, I had a neck injury (injured myself using Nautilus exercise machine about 15 years ago) which did not respond to PT (and only temporarily to medications), but strengthening exercises (which promoted improved posture) and general fitness training have resolved that problem. I still swim, but I'm afraid to get on a bicycle or to do anything that puts pressure on the base of the spine. Even playing the piano is a problem. The hardest part is that the pain consumes my energy, and I have less stamina for daily activities - even walking, cleaning up the yard. I did well on vacation (snorkeling, swimming, bird-watching, hiking) but as soon as I got home and back to my usual activities, it was back to square one. Fortunately I can still read and listen to NPR (BBC, too) on my back. I have just finished nearly a month of taking 100mg of Celebrex, the new arthritis drug, (which has no side effects); while I don't think it helped much, it didn't hurt either. I'm still looking for ways to improve this unfortunate situation.

Updated 1999-04-24




Pain during intercourse

Anonymous

I am a 25 year old female. I recently went to my doctor and was told I might have coccydynia. My initial visit was due to intense pain during intercourse. It looks like you have done a tremendous amount of research, yet no where does it mention this as a symptom.

I did have a dislocated pelvic bone 3 years ago. I always figured the pain of sitting was do to that. Unlike you, my major problem is not sitting or standing. Have you come across anyone like me in your research?

Reply 1: Yes.....I too have this problem and I am male. An erection is painful and ejaculation even more so. It feels like a blood vessel deep inside is plugged or damaged. I think this may be associated with the muscles that control my bowels and penis. I have mentioned this to my doctor, but have not gotten any answers. Sound familiar ??

Reply 2: In reply to Pain during intercourse. I mail this to you rather than posting because it is extremely embarrassing. Please pass this on to her so that she is aware she is not alone. I too have a lot of the symptoms described in this site. I too experienced this initially after the accident (I was rear ended) I was unable to have sex for two months due to the extreme pain not only everyday life but if husband and I tried relations I could not handle the pressure it caused in that area and would have to have him stop. During the last year I made progress towards getting well, but never fully made it. Now, the pain is once again extreme and again intercourse is painful, not to the same degree as before, but due to inability of laying on back.

Updated 1999-07-10




A real pain in the...Back side

Terry Tuell ttuell@ipa.net

Thank you for your site. It's been very helpful.

My wife first felt pain in early July, 1998. The local clinic took X-rays and said the tailbone was broken. They sent her to an orthopedic doctor who did an MRI. He said nothing was wrong bone wise and suggested going to see a Gastro doctor to make sure the colon was ok.

The Gastro doctor said everything was perfectly normal and because of her history of Endometriosis, he sent her to OB-GYN [obstetrics/gynecology]. The OB doctor did a complete Abdominal hysterectomy with hopes of her pain going away. It didn't. the OB doctor sent her to a pain management doctor. He tested magnets, and special cushions with no success. He gave her some cortisone shots with helped for about 2 weeks apiece.

She is ready to give up. However, we are now exploring chiropractic treatment. She does have bulging disks and her tail bone slants to the right. I will let you know how this helps in a future e-mail.

Further email from Terry Tuell, 1999 August 18:

In my last E-Mail, I mentioned that my wife was going to a chiropractor. He diagnosed Coccydynia almost right away and recommended ultra sound treatments and massaging the tailbone back into place. From her X-rays, her tailbone veered to the right. He guessed the tendons were inflamed at one time and as they healed, they pulled her tailbone out of line which is supposedly causing the pain. After three treatments, she is worse off than she ever was. It use to hurt only when she sit. Now it hurts all the time and the pain has spread down her legs.

My wife believes it was the Ultrasound treatments that caused more harm than good. Massaging the tailbone did not bother her and it was external treatment; not through the rectum like some treatments.

She's about to go insane from the pain and she is now considering having the tailbone removed.

If anyone has anything to add, warn, suggest, or share, please don't hesitate to post this board or send me an E-Mail.

Praying for Healing, Terry Tuell

Updated 1999-07-21




Coccygodynia--sciatica--prostate pain-rectal pain

Gary

During the 1980's I had all of the above, not from any injury to the tail bone. When the tail bone has not been injured it is not an orthopedic problem and orthopedic doctors should refer to colon rectal doctors, but only to colon rectal doctors who have excellent knowledge of levator syndrome & piriformis syndrome, very hard to find, see doctor Rubin in Edison, N.J., see colon rectal journal, he has published.

I am not a doctor, however for 3 months I studied all of the above at the Johns Hopkins Welsh Library. The staff was kind enough to let me in because I am a member of the scientific community. If you see an orthopedic doctor you will have to convince him that your tail bone was injured otherwise he will think you are crazy, thus giving you another problem that you don't need. For true cases of levator syndrome electro galvonic stimulation may be the solution, see Dr. Rubin.

A word to the wise-- this is a terrible condition and don't let any doctor try and convince you that you are crazy, you don't need an extra problem. Your problem was probably caused by your lifestyle. I call all of the above the "sit down disease" Sitting down too long causes my rectal muscles - levator muscles - to go into spasm which twists the tail bone and actually broke it at one of the coccygeal sections, I could not sit down without the section rebreaking. extremely painful..

The solution was electro galvonic stimulation followed by a lot of physical motion, legs, try jitterbug dancing, that motion fatigues the levator and piriformis muscles and causes them to go out of spasm. You can believe this or continue to suffer. You will be hard pressed to find a doctor who will look this up or who will understand this problem. For the best up-to-date info look this up in the colon rectal journal, go back several years. My problem ended after 6 terrible years and wasted thousands of dollars seeing the wrong doctors.

Remember stop sitting down and keep moving. Good luck to whoever reads this as you surely will need it.

Updated 1999-07-23




Injured coccyx from waterslide

Anonymous

I have been suffering from coccyx pain for about five months now after falling just a few feet off a ladder while painting. I went to the doctor a couple of weeks after the fall. I was shocked to see the x-rays of my tailbone bent inwards, because I didn't fall on my behind, but landed partially on my side. It then occured to me that less than a year before the fall I was injured at a waterpark while riding a waterslide. Halfway down the slide I went over a bump, came out of my tube and slid backwards on my tailbone the rest of the way. I remember being in a lot of pain and there was bleeding too. After three days the pain disappeared and I never felt it again until the fall. The doctor thinks the fall aggravated the injury. I was given pain killers and muscle relaxers. I also saw a chiropractor for a couple of months. At the time his treatments really seamed to help a lot. However, after only a month later I am still in pain. It is hard to sit, stand, or lay down for a long time.

I want to caution people not about riding waterslides, but how you ride them. When I was injured I was riding with someone else in a double-tube. The best way to ride is with someone in front and someone in back. My friend and I tried to go down side by side. At the point when gravity took over and turned the tube 180 degrees, we went over a huge bump. That's when I flew out. I partially hold the waterpark responsible for this. Although it was our choice to go down that way, the staff (stationed at the top of all slides) should be aware of the dangers of letting two unequally proportioned people slide down like that. We were not the only ones sliding in this manner. Others were doing it too. I am certainly not the frivolous law suit type, but after all the pain I have endured over this I sometimes wish that I could have done something. If you know anyone that this has happened to, relay my story and urge them to get x-rays before too much time goes by.

Updated 1999-06-18




Coccyx/ME/prostatitis - Neurontin

Chris Longthorp - chris@longthorpcc.karoo.co.uk

I have had ME for five years, coccydynia for 14 months and following a cortizone injection 7 months ago, which was to treat my coccyx, two weeks later I developed prostatitis which I still have. I saw a chiropractor for about 10 sessions with no positive results, at my last session he suggested an internal adjustment which sounded a bit radical so I declined. I have had two cortizone injections with no effect. About eight weeks ago I was prescribed a drug called Neurontin (gabbapentin), feeling that this drug was taking no effect I deciced to come off this drug gradually, having done so my condition ME wise has certainly worsened. I would very much like to hear from anybody who has taken Neurontin and also anybody who also suffers from 2 or more of these conditions. The combination is very depressing.

(ME = Myalgic encephalomyelitis: A synonym for chronic fatigue syndrome in the United Kingdom and Canada.)

Reply from Cynthia Harn:

Hi Chris,

I had my coccyx removed on 4/20/99. I took 300 mg of Neurontin 3 times a day prior to surgery and after. I also took Amantadine which also had some sort of side effect to help the nerve pain.

I am a firm believer in Neurontin! IT WORKS! I am still in pain from the surgery. Seems that I had so much pain that the nerves still must be screaming! The coccygectomy relieved a little of the pain. The neurontin continued to relieve the pain as my poor tush recovered.

I know the Neurontin helps because I have weaned myself off of it twice since the surgery and the pain has increased both times. I continue to yearn for the day that I can sit all day with no pain ... or fly in one of those lousy seats painless! I know it is coming! I'm certain the coccygectomy and the Neurontin were the right steps for me!

Best wishes, Cynthia

Updated 1999-07-10




Pain in the Coccyx

Linda

I've been diagnosed with coccydynia, after nearly a year of pain and many dr appointments to determine the cause of the pain. I suffered no injury that I can remember. Since my job is mostly sitting, I am usually in pain. However, I can't say that I'm ALWAYS in pain; it depends on the chair, the kind of chair, how it slopes, etc. Sometimes it hurts when I'm lying down, but not too often. Sometimes even in what seems should be a comfortable chair I begin to hurt within minutes. The pain usually goes away after awhile of standing or moving about; however, that doesn't get the work done.

We tend to travel on weekends for camping trips; I'm finding the trips to be very painful as time goes on - I do NOT want to this to reduce the quality of my life and my family's. Orthopedic surgeons have ruled out any surgery; I'm currently trying to control the pain with Naproxin. I'm scheduled to see a Physiatrist (not a Psychiatrist) next month; I'm not sure what will come of that. I've seen messages from people who had their Coccyx removed; so far no doctor has mentioned that as an option. What kind of doctor would normally make that decision? How what the decision made - pain all of the time? could never sit? What's the criteria for the decision? Any help or suggestions would be appreciated.

Reply from Jon Miles:

You don't have to be always in pain for this condition to make a mess of your life, or to have surgery. But I am surprised that the orthopedic surgeons have not recommended corticosteroid injections - normally that would be the first step, and surgery would only be considered after trying the injections 2 or 3 times. (and not everyone would be suitable for surgery). No-one has yet reported success with a physiatrist getting rid of the pain.

Updated 1999-12-27




Suffering since birth of 2nd child

Anonymous

Posted 1999-12-27

I gave birth to my 2nd child 18 months ago, and have had lower back pain ever since. I thought that it was just from carrying around a very large baby and a toddler, so I ignored it.....it will go away..... Well, it hasn't gone away, it is getting worse, and whenever I sit down, it gets much worse. I was so thrilled to find this web site, it appears that you are describing me! I have not been to a doctor yet, what type of Doctor do you suggest I see? I was going to go to my primary care physician, but maybe I should be seeing an Orthopedic????? I can not take this pain any longer, it is affecting my life in very many negative ways!!!!!!

I do remember shortly after the birth of my daughter walking one day and having a few seconds of what I can only describe as paralysis.....I couldn't move my legs for just a few seconds, and the pain was horrible. It happened a few times. Is this common in the beginning of this disorder? I also am not comfortable at all while sleeping, I am up 100 times a night changing positions.




Fractured  both sacrum and coccyx. Removal of coccyx not effective.

Sarah (taken off net)

I am in so much pain it has destroyed the quality of my life. A few years ago I fell backward down a flight of stairs and fractured my sacrum and coccyx. The pain is constant whether standing, lying down, or sitting. I avoid sitting because it worsens pain. I had several cortisone nerve blocks. For two to five hours there was no pain, but pain returned and cortisone didn't seem to be of benefit. I went to three physical therapy programs, but there was always a flare-up of pain, and doctors told me to stop as there are conditions where physical therapy worsens an injury. I finally had a coccygectomy knowing that many spine surgeons will not perform this procedure due to risks. I ended up with much pain, though a bone scan and MRI revealed that too much bone was left. I do not know whether I should have more bone removed or if there is some other answer. I need help. I am hopeful and prayerful that there is an answer somewhere to this intolerable pain. Perhaps a spine surgeon, anesthesiologist, or researcher has the solution.

Updated 1999-01-16




Trouble finding a doctor who cares

Margarita Kopper, Loskop@sol.racsa.co.cr

Hello. I'm a 30 year old mother of three small girls who lives in Costa Rica. About 10 months ago, after giving birth to my last daughter, I began feeling a lot of pain while sitting down and when getting up. After about 3 months I decided to go to the Doctor who gave me a cortisone shot, and said that it was not birth related and that it had to be from falling when I was little and sent me home. After a couple days the pain came back, and when I called him he said there was nothing wrong with me and that it was all in my mind.

I stayed like this for about 3 months, of course taking a lot of pain killers and getting worse. I can't sit in the car for more than 30 minutes, if I go to the movies I end up standing in the aisle and because we travel a lot lets not even talk about sitting in the plane or a restaurant (even now while I'm writing this..). So I decided to go to a Neurosurgeon who told me that I had COCCYGODINIA gave me a shot, a couple of pills, told me to swim a lot and do a lot of abs and learn to live with it. When I later called him to tell him that it was not working he didn't even bother to return my calls.

So about a week ago I decided to go to a different Dr who I think is a little more interested. He says that he doesn't think is birth related so we still don't know what causes the pain but he talked about the operation if the pain is consistent, but he says that is the last resort. Of course he didn't say what else I could do, but told me to go to the obstetrician and had him do a rectal exam so that we knew for sure there was nothing else there.

Updated 1999-10-24




Going to doctors regarding this I've come to see as pointless

Jennifer (taken off net)

I first injured my tail bone in 1984/5 (a fall in gym class). At the time the doctors said that it would clear up in a few months. The pain did subside some, but was still present until the early 1990's. Then out of the blue (or possibly brought on by mountain biking...something I'll most definitely never be doing again....wanna by a bike), last August the pain returned, four times worse then in high school.

I have a job that requires me to sit all day, and I'm not certain how much longer I can pull this off. The career I once loved, I now detest, and my work I think is suffering. I can not even tolerate hopping in the car to go down the street. You know the symptoms, pain while sitting, sometimes while lying down even, and extreme pain when getting up (which you have no choice in which to to incredibly slowly).

Maybe we should be forming some type of support group for people with this awful problem, seeing that there really is NO help out there for us. Maybe together we can find SOME clue as to what could be triggering it, and what may help. I'm now coming up on one year of having this problem again, and I almost wonder if it is getting worse rather then better. It is such an odd thing, that really only those that have this specific condition (as it is not really recognized) can understand. Going to doctors regarding this I've come to see as pointless...they do not seem to know what to say. I'll be researching this topic more, and checking up on this page for updates, and clues. I'll let you know what I come up with.

Updated 1999-01-17




Coccyx pain is awful

Kay

My pain started about March of 1998. I did not go to a doctor until August 1998.....when through a battery of test...MRI and others. All negative...

First off, I have Fibromyalgia....and this was just blamed on that with nothing that can be done....according to the doctors.

I did have injections (25 to be exact)....did nothing for the pain in the Coccyx area (but the pain increased terribly from the injections - never again).

I cannot take a anti-inflammatory because of my stomach problems.....

When I sit and also rise to a standing position it feels as tho I am being ripped apart. I can only sit leaning forward with my legs touching the floor. I am short and sometimes this is a big problem. The pain is terrible in my thighs and my left hip as a result. I now walk with a limp most of the time.

I have not been to a doctor for this since Dec of 1998....1 year now.. If they cannot help me....why bother.

I have learned to live with this....but sometimes it is hard to survive. I keep Tylenol 3 handy....but only take it when I just cannot make it any longer. I do have a strong constitution....and my bottle of Tylenol 3 has lasted me since last March.... I guess my tolerance to this is better most of the time. It is the times that I fail to tolerate it that makes me mad as all get out at every doctor that I have talked to. When they cannot see something it is not there ....or just blame it on Fibromyalgia.

Thanks for listening....sometimes I need to just vent to someone else that has the problem.

Updated 1999-12-24




Very hard to sleep or stand, but can walk for miles

M Strawson - strawson@netcentral.co.uk

I am a normally fit and healthy lady aged 52 with two adult children and I work full time. In my case the pain started spontaneously in February this year and gradually got worse. In April I saw my GP and eventually he referred me to an orthopaedic surgeon. Then on my first visit the ortho gave me a cortisone injection --this did no good at all A couple of weeks later (early July) it got so bad that my GP signed me off work for two weeks. During that time I saw the orthopaedic surgeon again-he offered to do an internal manipulation and injection , however during the time off work the pain eased considerably and as I did not see the point of having the op at that point I put it off. Since the pain has returned and is now worse than ever -- I have been seeing a chiropractor for the past 4 weeks and sometimes for a couple of days the pain does ease off a bit . The pain is worst when I am sitting down but is also bad when lying down (I find it very hard to sleep) or standing still. I would be interested to of any one else who experienced pain while lying down. When I have to sit down I try and sit with my right leg hooked under me as it seems to be the left side that gives me the worst problem. I can however walk for miles with hardly a twinge.

Updated 1999-01-17




Chiropractic works, but only temporary

Anonymous - mindyr@mindspring.com

I also injured my Coccyx. I have a great chiro who did an internal adjustment which works, but unfortunatly I continue to re-injure it. I've been unable to take the time off from work - I sit all day at a computer.

I know if I could just get enough time off for it to heal I would be ok, from what he says he saw alot of this type of injury in the New England area during the winter. People falling on Ice. etc.

Today I'm going to an Orthopod to see if he can't get me some disability so I can get this healed. Any help, support etc. would be greatly appreciated.

Updated 1999-01-17




Came on for no reason. Drugs help

Rick Thaxter

I'm Rick I'm a 33 year old electronics engineer from the UK. I have had a painful coccyx since September. I have not fallen on it or anything. I cannot link it to anything definite. Perhaps a habit of jumping into my car heavily - I don't any more. I went on a few transatlantic flights in the spring, naurally seated for many hours. I noticed some pain then but it quickly disappeared after the flight. Perhaps this could have been the cause, but 4 months earlier.

The pain came on gradually over a few days and became very intense when moving from sitting to standing up and vice versa. Eventually I would get sudden intense pain when walking and going down stairs. No position was comfortable unless I kept very still. I found that sitting in a chair with one large cushion under my thighs and one behind my back was best. The pain sometimes went away by itself, but came back without obvious provocation.

My doctor said that this pain can come on for no apparent reason and he gave me the anti-infalammatory, Diclomax (Diclofenac)- from Parke Davis. It works very well indeed, but the pain comes back if I stop taking it. I have just gone back for more before I am unable to move again!

Updated 1999-01-17




Caudal Block for Coccydynia

Nikki, Nmaton@aol.com

Have had coccyx pain for 6 months now. Pain is severe after sitting at my computer at work all day. X-rays showed nothing (except L3-4-5 are pretty "jammed up"). MRI showed herniated disc at L4-5. Have had 3 cortisone epidurals at L4-5, and one steroid injection at coccyx area (not at caudal site). Two different neurosurgeons have said surgery of disc would not help coccyx pain. I'm about ready to give up and accept this for the rest of my life. Has anyone had a caudal nerve block? Should I try this one last thing? Thanks for listening. Nikki

Reply from Jon Miles

I had a caudal nerve block - the cryogenic type. First they injected the site of the caudal block with an anesthetic, to see if that stopped the pain for an hour or two. If it doesn't, they won't go ahead with a nerve block. In my case, it worked and they did the cryoanalgesia some weeks later. This worked, but only for a few days. But for some people it works a lot longer.

Updated 1999-07-26




Acupuncture really helped

Anonymous (taken off net)

Please just try acupuncture to see if it helps. You have nothing to lose but money. I had a coccyx injury of about 8 months duration, nonresponsive to therapy, and acupuncture really helped. I got some improvement right away, and each subsequent treatment helped even more. Good luck! I know it is very frustrating to have this kind of pain.

Updated 1999-01-16




Have to travel for work. Sleep helps

Muktesh (taken off net)

I get a terrible pain in the coccyx when I get up after sitting for a while. X-Rays have shown nothing, and doctors haven't been able to help. This has been going on for three months now. I travel a lot in my job, and after long flights the pain is killing when I get up. While sitting it is bearable, though sometimes it is unfomfortable to the point of having to get up. Having had no luck with doctors, I can offer two suggestions:

1. Get lots of sleep - I find that the pain is a lot less when I am well rested.

2. Rest your back while sitting. I find that if I lean back and rest against the back of the chair all through while sitting the pain is less excruciating when I get up.

I hope this thing sorts out. My doctor said that it may be a reflected pain from some other part of the spine, but hasn't been able to help further.

Updated 1999-01-17




Wheelchair comfort

Mrs Weber

My husband had his tailbone removed in June and finds driving extremely painful so they adapted a wheelchair brace for his use in the car. The brace hangs on the back of the car seat (or wheelchair) and velcros around the chest to basically "Hang" him enough to relieve pressure and then he puts a cushion under his knees. It helps! It is called a Feminio Brace. Good Luck

Updated 1999-10-11




No injury, but incredible pain after sitting

Elise (taken off net)

I have had this for a few months, but I did not get it from an injury. It has developed and is getting worse. I am a stay-at -home mom, so I don't have a lot of time to sit down. But when I do sit for more than 15 minutes, I have incredible pain when I try to get up again, and then for the remainder of the day. I am going for an x-ray tomorrow. Does anyone else have this pain and not remember injuring the area?

Updated 1999-01-17




Football injury. Found painful lump

Ian (taken off net)

About a week of so ago I had an exteremely heavy blow to the coccyx while playing football. The impact was not from behind but from underneath, thus hitting the coccyx from the base of the spine. I am using Ibruprofen for the pain and as an anti-inflamatory which seems to just about take the edge off the pain, but my problem is this: I have discovered a small lump just to the left of the anus that is quite painful when pressure is applied and am wondering if anyone has any experience or idea what this could be.

Updated 1999-01-16




Pain after childbirth.

Jennifer Johnson (taken off net)

I had a baby 15 months ago and had severe pain in my tailbone afterwards, which I understand is not that uncommon. Eight months after the baby as born I received a cortizone shot in my tailbone and was told it was not broken and that the shot would take care of the irritation. I am still in quite a bit of pain when I sit and I can't seem to find anyone who has heard of it lasting this long. Is there anything I can do to speed up the recovery of my sore butt? (I have tried the dougnut pillow)

Updated 1999-01-16




Fractured coccyx. On morphine-like medication

Maeve (taken off net)

I too suffered the same fall and subsequent fractures. I currently have a pain management doctor - Dr. Krames phone 415-567-1219. He has done a couple of steriod injections into the fracture which helped briefly. Currently I'm on a morphine like medication to control the pain so I am not trapped in bed all day. The pain is terrible - unfortunately there are still some doctors who believe it is "all in your head" this is absolutely false.

Currently I've been told the remaining option is surgery which would require a spine surgeon AND lower intensinal sureon working together. I have decided to wait at least a year before trying surgery. The surgery may not cure the pain, may cause an increase in pain and may cause nerve damage - risks I'm not willing to take.

Updated 1999-01-17




Pain in the rear

Susan Justus suej@webworldinc.com

Five months ago (Feb 99), my tailbone area started hurting for no apparent reason. I have pain when I sit and the longer I sit the worse it gets. When I stand up - ouch - I can't walk for a few moments until the pain subsides. I am sorry (but also sort of glad) to hear that many people have the same problem. Before reading your website I was worried I had some rare disease.

About ten years ago, I had a heel spur on the bottom of my right foot. I had considerable pain while walking. I never went to the doctor and it took about one year, but I eventually "walked it off". The heel spur disappeared, never to return. I'm hoping this coccyx pain will eventually wear away in the same manner. Time to stand now -ouch- I've sat long enough. I hope you feel better soon.

Updated 1999-06-30




Failed coccygectomy

Kate Allen, KAllen1818@aol.com

To Anyone with Knowledge:

I underwent a coccygectomy for idiopathic coccydynia (no other treatments were tried previous to the surgery). I now have permanent "nerve damage/scar tissue" which occurred during the performance of the surgery. Whereas before I had acute pain only upon arising from a seated position, now I cannot sit at all!

I am in need of hearing from others who 1) may have experienced this much worse condition due to the coccygectomy, 2) any medical resources explaining such an outcome, and 3) the location of any physicians (neurosurgeons, spine surgeons, neurologists) who know about failed coccygectomies and any treatment for it.

Thank you so much for any help.

P.S. Thank you so much for your very valuable site.

Updated 1999-07-17




Pain when sitting or getting up

Stephen

I have had a lot of pain for the past 4 weeks in my lower area near the coccyx. I'm not sure whether I came about because of the gardening and lifting I did at home about 4 weeks ago or because I sit at work and sit playing cards till early hours of the morning but it has worsened. The doctor did not understand where the pain was and Xrayed me on the spine. The radiologist could not understand so I had to be xrayed twice. No abnormalities have been found so I have been referred to a Orthopedic surgeon who cannot see me for two weeks. This week I have now sprained my lower back probably trying to move without hurting my coccyx area, I have a lot of pain not just when sitting down but mainly when I try to get up, sometimes I freeze.

Just thought I would tell my story. Thanks for reading it.

Updated 1999-01-17




Fractured coccyx 8 years ago. Constant pain

Sherry (taken off net)

I really sympathize with you because over eight years ago I slipped on ice and fractured my coccyx. I was in constant pain and still am. I tried many forms of physical therapy and even went to a paid treatment center. I also had a cortisone treatment, which did not work. I consulted several doctors, all of which told me it would take approximately five year to heal. It is now over eight years later and I am still in just as much pain today and I was then. I recently consulted a doctor who said that the pain would likely never go away and my only alternative would be to remove the bone. I am very much afraid of doing this because he said that it was very rarely done and that there was no guarantee that it would work and that it was also very risky.

Updated 1999-01-17




Only morphine helps. Very depressed

TT

I fell or rather was airborne and landed in an upright sitting position on a concrete walkway ten weeks ago. I've fratured my coccyx in three places. at least that's what the x-ray showed. I've had a cortisone injection-no help-nasids-no help-only morphine(MS CONTIN) helps but i have 4 children and a husband,home,etc so i try to limit the meds. the worst is that i'm a ballet teacher and as of yet am unable to sit,squat or raise my leg higher than to go up steps. after 30 years of teaching i'm very depressed.I'm considering acupuncture and possibly pain management - surgery is my last resort but getting to be a consideration more and more. I'm planning to go for a scan and an mri hope to get some answers but it seems impossible.

Updated 1999-01-17

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