My coccyx pain came on suddenly without a prior injury. Like most of the people who have contributed to your website, I have tried just about everything. I keep a journal of the doctors I've seen and the treatments I've tried. I think the biggest thing I've learned is that doctors know very little, and not just about coccydynia. I hopped on a plane and spent a week in Florida at Clear Passage Therapies (May 1999) for myofascial release therapy - I was the one who told them about your website and urged them to check it out and/or contact you. I was pleased to see them listed as a resource on your site while browsing this afternoon. They are "good people".
I now believe my problem is caused by scar tissue. A week in Florida was not enough to cure me, but they did as much as they could. For several months, I saw no improvement though I felt the trip taught me a great deal about my problem. Now a year later, if I look at the pain levels week to week, I see little or no improvement, but if I compare my pain now to a year ago, especially before I went to Clear Passage, I see a large improvement, perhaps 80%. Once I couldn't drive a car for more than an hour without punishing pain for up to two weeks afterwards. Now I can drive those 2 hours (I don't push it longer than that) and while I might ache a bit, it doesn't last long. I can also get through an 8 hour work day at my desk, though I carry a Tush Cush with me to work and for the car. At home, I don't need it. I saw significant improvement with physical therapy, but only as long as I worked out very hard nearly every day - once I stopped, the pain came back. I continue to work out as much as I can, however, because I think there are long term benefits - and it never hurts to stay in shape.
It took me a while, but I found someone an hour from me who can do myofascial release therapy - he refers to it as Active Release Therapy also. I've had 4 treatments so far and have seen some improvement. It's slow going and oh so frustrating, as you well know. But I feel like I am leading as close to a normal life now as possible.
After resigning myself to the possibility of a permanent condition, I decided to stop allowing it to prevent me from doing things I wanted to do. I own a horse and hadn't ridden in a year and a half since it started. So I designed a saddle pad in August 1999- it's a wishbone shape, sort of like a bike seat with the narrow end in front and splitting off as it moves back. Your seat bones rest on the two pieces so that your sacrum and tailbone are suspended in mid-air. I found a company that designs foam cushion pads that reduce jarring and got them to cut their material according to my design (they didn't charge me for more than the original material either!). Then I got a tailor to make a strong cover (since it will be tugged on quite a bit from the riding) padded with cotton and attached with velcro straps here and there to secure it to my saddle. I can now ride up to one hour without pain. I might get a little achy towards the end, but the important thing is there is NO residual effect. Like you, when I aggravate my condition, it will punish me for days or longer. With this, there is no flare up of pain. People think I should patent my idea, but I'm not sure there are many equestrian/coccyx pain sufferers out there. Ha.
I was distressed to read that you had undergone surgery to remove your tailbone, fearing that it would make you worse. I sincerely hope that it gives you your life back - you have suffered much more than I, and I can't imagine how you've endured it. If you do reach a point where you are significantly pain free, I hope you will continue to monitor it carefully - in other words, P.T. or massage or even myofascial release. I'm sure you will of course!
Thank you, good luck, take care and God bless,
Note from Jon Miles: See also Horse riding for people with coccyx pain