Coccygodinia and operation, removal of my coccyx

Mireille -

Posted 2008-12-14

I am a French woman, living in the Alps. I started suffering from my coccyx (coccygodynia) in November 2004, then 54. It hurt only in sitting position, immediately when sitting down, with increased pain when standing up. No identified cause for this pain: no recent fall, nor significant weight increase, nor lower back pain.

December 2004: I consult my usual rheumatologist. He did not detect any abnormality on the X-ray (face & profile), and prescribed oral anti-inflammatory. Pain did not yield. This doctor then advised me to wait and see. I decided to get alternative advice.

From January to June 2005: I consult two different osteopaths, who unsuccessfully try manipulations. Then I browsed on the web about coccyx pain (coccygodynia). I rapidly focused on Dr Maigne (see Doctors and specialists in France) by different ways: Your website, but also interview and publications of Dr Maigne. Therefore I decided to consult Dr Maigne in Paris (600 km from home, a 1200 km return trip without any reimbursement from the social security ).

July 2005: I consult Dr Maigne, dynamic x-rays (no visible abnormality) and first local injection of hydrocortancyl under x-rays. 4 weeks later, slight improvement, and decision together with Dr Maigne of a second injection, which he performs in aug 2005. 4 weeks later, clear progress, symptoms have almost disappeared. The relief lasts approximately 4 months.

February 2006: Pain resumes, still without identified cause.

March 2006: Dr Maigne performs a third local injection of hydrocortancyl under x-rays. Unfortunately, no benefit this time.

April 2006: I ring up Dr Maigne, who prescribes a MRI, to seek for a suspected spine on my coccyx .

May 2006: MRI in Grenoble, to avoid the 1200 km trip. Radiologist statement: No spine, but local inflammation. Then consultation with Dr Maigne. When seeing the MRI, his diagnosis is the exact opposite of that of the radiologist (and this will be later confirmed by the operation). No inflammation, but most probably a bony spine, hardly visible because of the poor quality of the MRI. Dr Maigne attempts some manipulation that will never bring any relief. He prescribes a CT, which will be performed at the Hôtel-Dieu in Paris, the hospital where Dr Maigne practices.

July 2006: CT at the Hôtel-Dieu, Paris, confirms the bony spine on my coccyx. Consultation with Dr Maigne, then with Dr Maigne and Pr Doursounnian at the Hôtel-Dieu Paris, The operation is decided.

October 2006: operation (removal of my coccyx, last vertebra) by Pr Doursounnian at St Antoine hospital in Paris. Pain correctly relieved by an appropriate medication. I just suffered a little, except on the operation day, and I gave up pain medication as soon as I left the hospital. I left the hospital 7 days after the operation. No complication, nor infection, hardly visible scar after the stitches were removed.

Sitting was prohibited for the 2 weeks following the operation, and anyway impossible longer than half an hour for many weeks beyond! Neither the social security nor my own mutual insurance company would pay for a 600 km ambulance ride, I went back home lying and strapped on a mattress in the back of a minivan., A comfortable and safe installation, but not fully compatible with the road code… Willing not to miss any possible chance for success, I remained very careful for several months : relax, slow resuming of sports activities (walking, swimming…), and avoiding prolonged sitting position for about 6 months. Slow decrease of the pain while sitting.

February 2007: 4 months after the operation, I reached a pain status I would quote as equivalent to the level before the operation. Indeed a different pain, more diffuse, less when standing up.

April 2007: 6 months after the operation, the pain level has strongly decreased, and is now appreciably lower than before. I keep being careful, but I can now sit down in an armchair, travel by car, go back to the cinema, etc... A doctor from Dr Maigne's group in the Hôtel-Dieu contacted me by phone for a quiz about my operation and after-effects. This shows that Dr Maigne and Pr Doursounian are still pursuing research to further improve the cure of coccygodinia.

June 2007: Improvements slow down, but still progress. I definitely stored my ring-cushions. I still select carefully my seats, avoid prolonged sitting that remains uncomfortable. I can ride a bicycle for short distances, and with a V shaped saddle.

August 2007: status quo, improvements seem to have stalled.

October 2007: improvements have consolidated . A year after the operation, I can sit almost normally. A few seats are still uneasy, but it is so much better than before! I can now have a normal social life, have dinner with friends, travel, go to the cinema.

January 2008: No more problems. No precaution before sitting down. Except for this tiny piece of bone kept in its box, I would tell that I never had anything wrong with my coccyx!

I can only regret insufficient training of physicians to the pathologies of coccyx: It seems that Dr Maigne and Pr Doursounian are the only competent people in France (and beyond?) in this field.

Many thanks to Jon Miles for his website who made it possible for me to get in touch with the competent people and eventually to get rid of this painful problem!!!

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