Tuesday, December 28, 2010

Why the Inaccuracies in Restenosis Statistics?

The topic of the day appears to be restenosis percentages and statistics. I think I have talked about it on four or five different group pages, so I copied my last comment to post it here. The numbers we are tossing around are likely very inaccurate at best.
Everyone is going to have very different opinions because each case is unique. All of the points made have merit. One of the reasons there is so much disparity is because all doctors do not openly communicate. That is hardly news worthy because it doesn't normally happen for any medical procedure. This is a global issue and unique in that the Internet has been the driving force behind this issue. Nothing akin to this has occurred before. Then add the controversy about the reality of CCSVI and it becomes very complex. We hear about some new elements almost hour to hour rather than the usual weeks, or months we have been used to seeing. On the other hand we can be sure that we are not exposed to all the background activity that has to be happening under the cyber radar. This is why the statistics are so varied. We are hearing wide differences in improvement rates as well as restenosis. It is reasonable to assume that none of them are on target.
Politics and public opinion have a great deal to do with what the doctors will and won't say on record. Even Dr. Zamboni toned down his rhetoric when he was given scathing reviews by neurologists like Mark Freedman and the MS societies in most countries. One doctor may report a restenosis rate of 70% while another has only 5%. Some doctors only do the inner jugular veins and other more progressive ones will do the azygous, sigmoid sinus and iliac veins depending on their experience and expertise. The popular notion that there is not a stent made especially for the treatment of CCSVI is also in error.
If doctors felt free to share information, this would not be the norm. Competition is as alive and well in this medical arena as in any other. Neurologists, interventional radiologists and vascular surgeons have never been on the same ring of the food chain. Neurosurgeons are also climbing on board for more complex issues. None of us have identical venous structure either, adding to the confusion. We also have different levels of damage and disability.
In any case, only time will give us all the answers. Things will improve. I don't believe that a lifetime of procedures is either necessary or efficacious. I have had two, but not due to restenosis. I did not have the sigmoid sinus nor the azygous done the first time so had it done three months later. It has been 7 months, and my last MRI shows a reduction in the size and number of both brain and spinal lesions. Doppler shows that everything else is flowing as it should and the stents are in place and healed.
All of these issues would find closure if not for the pride and greed that drives the opposition.
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