Multiple sclerosis plus coccydynia


Posted 2006-10-01

I live in Limerick, Ireland close to Shannon airport. For some considerable length of time, I have been a frequent visitor to your excellent resource I had the misfortune of falling on my coccyx in summer 2004. I fell from my front door porch about 4 inches high and landed full impact on concrete. The reason for my fall is probably related to the fact that I suffer from Multiple Sclerosis (MS) and both my leg strength and sense of balance have been compromised for about seven years.

The following 18 months, my experience mirrored many of your contributors. I attended my GP, numerous physios, one Dutch orthopaedic consultant based locally, a chiropractor, two different pain consultants/anaesthetists. the last of these administered a total of four injections into the Ganglion impar, the average relief I received from these was between 3 and 6 hours!.

Last April, in desperation I sent a chance email to Dr Maigne (see Doctors and specialists in France), explaining my circumstances. All routes in north east Europe seems to point to him and I wasn't making any progress locally.

To my surprise, he invited me to his clinic and also to the Hopital Hotel Dieu, on the following day for x rays and possible discography (precision injection). The date offered was only four weeks delay. It took me a little time to get my head around the idea that I couldn't avail of this protocol in my own country. Also, a certain amount of derision from the less informed amongst us. I should mention that, in Ireland, our health system is dependent on subscribing for additional insurance cover over and above the public health system, e.g. BUPA or VHI. The prospect of getting into an open ended process with a health system which I would have to pay continuously myself, including possible surgery overseas, did not fill me with joy. However, I persuaded my local neurologist to lobby on my behalf to fund any procedures indicated by Dr Maigne. This was critical, because it is unlikely I would have received the same support from a local orthopod or pain management guy, as that would be tantamount to their admission to failure.

To my surprise, my insurers agreed and Ryanair obliged with cheap flights on the particular day to Paris Beauvais. Off I went. One thing to note is that the Paris Beauvais bus stops only 3/4 km from Dr Maigne's practice rooms (who said Ryanair wasn't convenient?). I found Dr Maigne to be charming, really sympathetic and understanding to my problems. The next day he brought me into the hospital (beside Notre Dame in Central Paris) and he followed his well documented protocol to the letter. I went away following two injections of corticosteroid. The impact of these was not readily apparent, worse if anything thanks to the bruising associated with the injection. However gradually after about two weeks, the pain tapered away to about 10% of before and I have had a good three months like this. As predicted, the pain did return though not as chronic as before. Friday last Dr Maigne repeated the procedure in Paris as before. I was quite sore the day after but I am not too bad today. Hopefully, in a week or two the steroid will have kicked in. I will let you know how I get on.

If anybody else is thinking about this course of action please do not hesitate to contact me for convenient buses, cheap good value hotels etc. Even Paris can be done on a budget if you are careful.

One thing I notice is that my leg stiffness and mobility is directly correlated with the level of pain experienced. Also more activity makes the pain worse. Some of the local professionals equate this directly with the progression of my MS (in other words "don't waste my time, there is nothing you can do about that"). There may be some truth in this but I don't entirely support this view. I don't know if anyone else has other complications as well as coccydinia. I would like to thank Jon profusely for putting this resource together, as it has certainly helped me keep my head on during the last 18 months


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