Need advice on my coccyx pain

Laura -

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

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

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

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

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

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

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

Sincerely, Laura

Updated 2001-05-24

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