Coccyxdynia for 38 years

John -

I had a pilonidal cyst removed in 1967. the surgeon did not stitch the area but instead decided to put a pack inside and let it heal from within. Which it did . . . 5 months later! It should have healed in 6-8 weeks. About 1 month before it healed I started noticing some pain in my tailbone when I sat. I had never experienced pain previously in this area. About 6 months later, I developed another smaller pilonidal cyst, this time removed by another surgeon who stitched up the area. About another 6 months later the surgeon had to remove the old stitches and put stronger stitches in. Now I officially had coccyxdenia. 3 surgeries for cysts and bad stitches and now a new problem. Lots of deep scar tissue, nerve irritation, all at the coccyx bone site.

The treatments I have received over 38 years, all unsuccessful, were, in order: several injections of lidocaine in the early years; acupuncture; darvacet pills; anti-inflammatories. I went to an orthopedic surgeon regarding coccyx removal and was told it would not help. I did go to a chiropractor for several years. The good news is that I did obtain some pain relief. The bad news is that, and this is only my opinion, I believe he pinched a nerve in my lower back resulting in a ruptured disc.

Over the years, it had been very difficult to live with this condition. Like others, there was a time or two when I thought of suicide. But I had a wife and 2 small children and just kept going.

I had to make many lifestyle adjustments. First I had to deal with sitting at work. What I ended up was standing at my desk with a wooden coffee table on it. Yes, my father-in-law partly cut the front legs so the surface of the table would slant toward me to do my work. Years later, when I had to use a computer, I ended up putting the computer on a hospital tray/table...( the one you eat off when you are in a hospital). So there I was working away on my coffee table and hospital tray/table. And standing up most of my workday. It sounds funny now, but it was the "butt" of many jokes by my co-workers. Other things which have helped are: the proper cushion with you at all times, ( of course), pain management clinic, and as everyone of you know....standing as much as possible. I try to walk a lot especially on nature trails in the woods.

If I sound like I have this thing under control...I do not! And I, as I am sure, others out there, have other chronic medical condition. In my case it a very bad back, etc. All these other problems, I can manage to live with. Coccyxdynia is the one that is soooooooo hard to live with. And as several others have said, we say we have back trouble instead, or joke about it...and we suffer in silence.

Jon, I am so grateful to you for maintaining this web site. I came across it by accident. I hope to learn from others at this site and the t-bones group, and contribute whatever I can.

You are a special person Jon, and it is very nice to meet you!!


Updated 2005-03-20

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