CCSVI is all the rage it seems on the "MS circuit"...or is it? Surely by now most people with MS have heard about Dr. Zamboni's research into a condition he calls CCSVI- Chronic Cerebro-spinal Insufficiency. The short version (very short) for my non-MS friends is that the veins that drain the blood away from the head are blocked and/or partially collapsed in MS patients, resulting in restricted flow. This also causes backflow of blood into the brain and spinal cord, and along with it a toxic buildup of iron.
Because of various factors, a procedure to correct this condition has not actually been approved here in the US, except for trial studies. I'm pretty sure phase two of the Buffalo trials is underway. In many, if not most, MS patients that have been studied so far there has been a stenosis of the internal jugular veins on one or both sides of the head/neck. In many, there are other veins affected as well, most particularly the azygos vein.
Many MS patients, desperate to be relieved of their distress, haven't waited for the outcomes of studies or approval before having corrective procedures done- often opting to go to a foreign country to have the balloon angioplasty .Granted, the info coming back does seem promising, and some of the videos I have seen seem quite compelling. But is it safe?
The MS organizations haven't to my knowledge released a statement regarding CCSVI, though they have some info on their websites. The neurologists who are currently treating MS patients potentially stand to lose out if this turns out to be a viable treatment option, as it will shift treatment from Neurological drugs to slow the progression to a teatment of the underlying stenosis, usually done by an interventional radiologist.
I have been in close contact with several MS pateints who are on the CCSVI bandwagon, and even have spoken with some who have had the procedure (a ballon angioplasty on the affected veins, sometimes with stent). I wish them luck, and pray for their recovery. It is my understanding that procedures are now being done in some instances in the US, but under what protocols I have no idea. I am hoping the early results will lead to a much quicker pace and open this up to more patients.
In the meantime, because I have MS, and know just how wretched it can be, I can only say be safe out there, look at your options, do what is best for you. Let's all hope this is the miracle that so many have waited for.
