How to get treatment -- my story

Stubborn Patient

Jon - Thanks very much for starting and maintaining this Web site. It was instrumental in my getting treatment, and I want to tell other people how I used your site to do it.

I went to a couple of doctors before finding your Web site. They did all sorts of tests for bone cancer, prostate cancer, etc. Everything showed up negative (normal). One doctor told me the pain was in my head. I imagined myself right out of his office and went somewhere else.

After this I was really glad to find your site, because your description of symptoms was exactly what I felt. However, even after thoroughly reviewing your site and the medical papers, I had trouble finding a doctor who would take me seriously about my tailbone. None of them would believe that tailbones can move, for example.

Finally what I did was print out the following paper from Dr. Maigne, pictures, diagrams, and all: Management of Common Coccygodynia

I took this paper to a series of doctors and finally ended up at a doctor who specializes in pain management. I showed him the paper and convinced him to set up the sitting versus standing x-ray with a radiologist. This clearly showed that my tailbone was moving, exactly as Dr. Maigne's paper said. The doctor said that he would never have believed it without the x-rays.

The doctor agreed to try the injection treatment mentioned in the articles on your site. While watching under flouroscope, and under local anesthetic, he injected a combination of corticosteroid and lidocaine into the disk that was at the place where my tailbone was bending. Within a couple of days I had no more pain other than a bit of bruising from the needle.

I was pain-free for about 10 months. It's been a year now, and unfortunately the pain is returning. However, now I know that it can be treated, so I don't have the despair I had before finding your site. I'm planning to go back to the same doctor soon. He had told me that we could probably do two or three injections max, then would have to think about other strategies. But at least this means about 10 months at a time without pain, which anyone reading this will understand is priceless.

For those that still have trouble getting doctors to believe them, I have some ideas that could help. I can't take any responsibility or make any claims for their effectiveness outside my own situation, but they worked for me.

The first thing to do is print out Dr. Maigne's article and any other articles you think are supportive. Avoid printing out or mentioning anything discussing chiropractic, acupuncture, or other "non-traditional" treatments -- these will only give doctors further reason not to take you seriously.

Go straight to a pain management specialist and convince him/her to set up the sitting/standing comparison x-ray mentioned in the article. The x-ray has to be done carefully to make sure a comparison is possible, so bring copies of the Maigne article to the x-ray appointment and get the radiologist to agree to do the x-rays exactly as described in the paper. If they refuse or say it's not necessary, leave before they take any x-rays and go find another radiologist.

By the way, if your insurance makes you go to a "primary physician" first, do so but keep changing primary physicians until you find one who will prescribe the diagnostic x-ray, AND who agrees to refer you to a pain management doctor if the x-rays show that your tailbone is moving. Make sure he/she agrees to both actions before you do stay with that doctor.

No matter how many doctors tell you no, keep changing doctors until you get one that will listen and take the exact action you want. If you run out of doctors, get out the list of doctors from this web site and call some of the doctors in other states, asking them to tell you open-minded doctors in your area.

With any doctor you visit, be pushy, don't take no for an answer, and make sure to be well prepared with information, including the printed articles. Bring extra copies of the articles to leave with the doctor and tell them the URL for the www.coccyx.org web site. Doctors usually respond better to facts than to emotional pleas -- provide a lot of evidence and tell them that the x-ray diagnostic is needed to reach a conclusive diagnosis. Discuss the problem dispassionately and objectively. Try to get the doctor interested in learning about this "new" problem and working with you to resolve it. Tell them that they seem more open-minded than other doctors you've seen, and you're sure that they will want to get the x-rays to prove or disprove that your tailbone is moving.

Don't mention anything about treatment until the x-rays are done and a doctor has agreed that the tailbone is moving and could be the cause of the pain. If the doctor wants to discuss treatment, tell him/her that's probably not appropriate until the source of the problem is identified. Once the x-rays are done and the doctor agrees that the tailbone is moving, show articles about the two main treatments (injection and surgery) and ask for an injection. For myself, I intend to avoid surgery as long as possible, hopefully forever, but you should discuss both alternatives with the doctor to make your own decision.

I can't emphasize enough that you must be really pushy and persistent, especially if you are a woman. I find from experience with my wife that many doctors rarely take women seriously in general, and often tell them that their pain is imagined. Both male and female doctors do this. I had a doctor tell me that my pain was imagined, despite the fact that I'm a large, well-educated male with a forceful personality. If you are a woman or you have a gentler personality, this is even more likely. If it happens, give the doctor a strong but civil tongue-lashing, and leave. You'll find someone else eventually.

Above all, be firm in your resolve to manage your own situation and remove all obstacles. Nobody will do it for you. I wish you good luck.

Stubborn Patient

Updated 2003-08-31

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