Back Pain Community

hi and welcome to the support group -

we have a member that has the same/similar problem as you do - she does not get on the board that often but I will get ahold of her and have her respond to your post -

take care - Joy

I will try to help you by giving you some information about the problems I have, and some of my experiences. I have had several slip and falls and trip and falls landing a couple of times on my rear. My tailbone is completly severed now from the sacrum. In other words my tailbone now is in an "L" shape. I also have degenerative disc disease, and a condition called pudendal neuralgia. You can find something about that on spininfo.org. The reason I gave you the web address is that hopefully you and maybe others are made aware of this condition as it is rarely diagnosed and treated. On the surface some of the symptoms are similar.I researed about 18 months and read a post from another woman who had the condition. I went to the Mayo Clinic and was diagnosed with it after I thought that was another of my problems. I must say after I went to the Clinic I had another fall and finished breaking my tailbone. I have also had PT, aquatic therapy, steriod injections, a glanglion impar, and two pulsed radio frequency ablations (she burned the nerves). She said the second time that she zapped more nerves. This was done by a pain management physician. I am not sure whether it helped or not. With the additional problems I have,it is difficult to know for sure.

My sister in law is an R.N. She told me to leave the treatments alone and use the pool and take the aquatic therapy and exercise as much as possible and that the tailbone will eventually callus over and the pain will stop. I don't know whether that is true, but I have begun to have less pain than the last 3 years. Nothing the doctors have done does not seem to have helped the sitting problem. I can hardly sit for more than a few mnutes at the time. That really cramps your style!!

I do have pains so bad sometimes there is nothing I can do to feel relief. I take Oxycodone for pain, Neurontin for nerve damage pain, and I take Aleve between. All the meds together does not help the pain, I use heat and ice packs. and now I take Elavil at night, Without it I would hardly sleep at all.
I did talk to the doc about removal of the tailbone and she said if I choose to do it that I should be sure the doc has successfully done it many times. My advise is to be sure you have no other problems causing the pain, and research the success of people who have had the surgery before you decide to do it. Look up the way it is done and make your decision then.

I would really like to hear more from you. I truly hope I have helped you even a little.Please give me some more info about your situation. Do you have trouble sitting all the time? Do you sleep well? Do you feel you have exhausted all the treatment options prior to surgery? You should be able to google and find the group who posts about this surgery. It is not a simple uncomplicated thing. I wish only the best for you. I await your response.

Hello, thank you for your reply. I have been dealing with this for almost 4 yrs the last injection i had last week was a ganglion Impar block and i hav had many other injections had PT and chiropractor saw a surgeon to see if anything else could be the problem and everything was fine ! I had an MRI and it did show 3rd intercoccygeal space separationand probable disruption of the posterior sacrococcygeal ligament i also have disc bukges L2/L3and L3/4 and L4/5 and i have Sacrolitis which is not responding to treatment either !! I can sit but not for long although i think i almost get used to it but when i shist position or go to get up the pain is worse ! I can't rest comfortably in my bed to watch TV read or anything ! Ithe area also gets very very sore even just to wash up ! I have not found any doctor in this area that treats this problem except the injections i an thinking of the surgery because i feel the injections are not that beneficial ! Just tired of it all !! Thank you for your time ! Oh and Docs are so reluctant to keep mr on pain meds and i can;t take ibuorofen products !! take care !

I am sorry it has taken me so long to respond. Even to sit a little while without pain is great, but I don't think you have gotten used to it. Maybe you are getting numb. Getting up from a sitting position is common. It hurts bad. I understand what you mean about the area being sore to the touch. I did try to look up the conditions you were diagnosed with. It does seem the intercoccygeal space separation might be the detachment of the coccyx from the sacrum. The disruption of the sacrococcygeal of the outer ligament would seem to mean the ligament is probably pulled caused by the spacing of the coccyx. That might be the cause of your pain. My wish for you is to find relief from your pain. I know how you must feel. I have suffered with this for three years getting worse so much of the time.

The thing that has helped me the most is trying not to sit as much as possible and having pool therapy, pelvic floor therapy and excersing the muscles that surround the painful area. If you can strenghten the core muscles you will have less pain. Have you tried Aleve or Advil? What about acetamenaphen?
Aleve works best for me. Did you ever find any information on surgery for removal of the tailbone? This would be something I would strongly advise. I spoke to my pain mangement doctor's nurse yesterday and she told me my doctor did not give pain medications because she is only in her office on Friday's there. Therefore she is not able to follow on that treatment. Now I don't know how I will manage the pain. The Aleve alone is not sufficent.

Blessings, Charl

Coccydynia can be a very challenging condition to treat. As spine surgeon I do not encounter this condition very frequently, and fortunately, many of my patients have responded well to conservative, non-operative treatments including therapy, injections, medications, etc. Unfortunately, you seem to have had this quality of life limiting pain for 4 years and failed to improve despite all the appropriate conservative treatment options.

Although my personal experience with performing surgery for excision of the Coccyx is rather limited, it is a relatively quick and simple procedure to perform from a technical standpoint. As in many other surgical interventions for chronic pain, the predictability of success with this procedure is often limited.

Nevertheless, in your particular case, I believe it would be worth your time to consult with a spine surgeon in your area. A good consultation would help you weigh the relative risks and benefits of the procedure so that you can make a well informed decision based on quality of life consideration.

I wish you all the best.

Thank yoou for your reply , this condition is just so annoying and the fact that many Doc's don't specialize it really challenging !I can't spend my life avoiding sitting and getting injections all the time !!I have had so many as it is !! as far a s exercise i just got an elliptical so i am hoping that maybe that exercise inm general will be good !! I am sorry your Doctors office lefe you with no pain meds you would thingg an associate might call it in !! Good luck ! Let me know how you are doing ! Oh and by the way i got an appt with a spinse surgeon for 5/3/11 wish me luck !!

Dear Dr. Levin , thank you for your reply . As the years have gone on i have learned that this cooydynia problem is very challenging !! My pain doc is very good and has tried many different injections , last week i had a ganglion impar block but it has not helped ! After more research to find a MD that will treat this condition i did find a spine surgeon 20 min from my home and i have seen him before for issues with my neck !! I have it all from top too bottom I also have Rheumatoid arthritis and Sacolitis and all kinds of disc issues with my neck !! Any way my appt is May 3 i hope it goes well this Doc that i am seeing is very good but hard to talk to !! I just have to bie the bullet and get all my questions answered !! Thannk you again for your time ! Tame care !

Hello Mictim,
Dr. Levin seemed to answer your questions basically how I was trying to. I am happy you are planning to see a doctor soon. I trust you have found out that he has successfully performed this surgery many times. I do wish you all the success you hope for. I only wish that my tailbone was my only issue,Then I could know there was some light at the end of the tunnel. It is nice to know we can complain here on this board and others know how we are feeling. I wish all of us could find something that we could do to be pain free.

Blessings,
Charl

Hello, Thank you again for your reply . I wish my tailbone was my only issue also !! I have rheumatoid, i have disc issues withh my neck,Sacrolitis, bulging discs lumbar, i have knee problems had surgery 2 times this yr for that and one of them is giving me problems and i need foot surgery !! HMM what to ffix first !! How pathetic ! I hope you are well or the best you can and thank you again , take care ! Oh and i will update you after my appt !!

Thanks, please do update me.

I am a 56 yr old woman and I also suffer with coccydynia. This condition suddenly appeared about 2 years ago and the pain was unbearable. My doctor wanted to give me pain medication but I can't tolerate it because it upsets my somach. He sent me to a physical therapist who told me that there was nothing she could do for me. Last August I started seeing a chiropractor who practices Gonstead Chiropractic. She was optimistic that she could help. She also encouraged me to participate in water aerobics. For the first month I saw her twice a week for adjustments. I now see her once a month. And, I go to a water aerobics class twice per week. My pain has reduced significantly. In fact, there are days without pain and when I do have pain, it is tolerable. I had never before seen a chiropractor and was skeptical at first. But, I was in so much pain that I was willing to try anything. I can't say enough good things about this treatment. I'm hopeful that my pain will eventually be completely relieved. Good luck, I know your pain and pray that you will get some relief soon.

Hi Mictim, I gradually acquired severe coccydynia for no apparent reason. It grew worse and worse until I could no longer ride in a car, sit at my job, or even lie down to get relief. I walked as much as I could, miles and miles a day to try to get away from the pain. I tried many different types of physical therapy, many types of injections, and pain meds; none which even touched the pain.

I eventually had to quit my job and try to find a solution for myself. I called and made appointments with many different types of physicians and surgeons. Finally, I came across an older, gentle, ortho surgeon, who totally read my medical history--many of the physicians I saw were hastey and thought meds and p.t. were the answer, but they never really listened to me or read my medical history.

This man took x-rays of me in various position and saw that the tailbone was at a peculiar angle. He said he would remove the tailbone; very slowly and carefully, as not to damage anything else in the area. He explained that the surgery would include a long, slow recovery, but assured me that I would be better in the long run.

I had the surgery the first week of January that year, and it was everything he predicted; a slow, painful, and long recovery. I couldn't say until mid-September that it was worth having it done. I am very happy that I had it removed. I was able to return to working again, though I still avoid sitting for long periods of time, I can live a very normal life again. Without the surgery I had no life. I am extremely grateful to this kind and gentle surgeon. He gave me my life back.

It's been nearly 8 years since the surgery and I would do it again if I had to; despite the slow and painful recovery time. My family and I enjoy riding ATVs and I'm happy to say, that we're all back riding again and loving life!

I pray that you can recover from your pain. God bless.

Dear Dr levin, I saw another Spine surgeon for a consult regarding my coccydynia and sacrolitis because both of those conditions are no longer responding to any injections or ablation, He said he has no treatment available he does not remove the coccyx and he does not do fusions of the SI joint ! I am so discouraged ! I am not looking for surgery but if it would fix these problems i would take a chance ! I can not find any spine surgeons in this area that does these procedures ! I live on the border of NH and MA do you know of nay specialist in this area ?? If you do could you please let me know , Thank you ,Michele

Hi MICTIM - I read your post - Unfortunately, WEBMD's policy is that we cannot list physicians/hospitals/personal information on the support group (or any of WEBMD's sites)

however, there is a search engine at the top of this forum - it is located under the "SEARCH THIS COMMUNITY" right under that is "DOCTORS" in smaller print - just click this on and it will allow you to search for physicians in your area.

Also, while searching for a physician - please search for either an Orthopedic Spine Specialist OR a Neurosurgeon Spine Specialist.

I understand your concern for wanting to have this done - hopefully by getting opinions for both these specialist you may get a broader range of what your options are -

good luck - keep us posted - Joy