dania wrote: numbness23 wrote:
i understand your point totally i get it, but even if it helps a subset of people??
When I had it done for the first time June 2010, it was then reported that you either got improvements or not. It was even said that you may not improve but it will stop the progression. Nowhere did it say that having this procedure could result in your veins closing up more and becoming worse off.
People should be aware of that. There is a chance you could end up worse. There are so many that this has happened to.
I know how wonderful you feel when the veins are opened and the blood is flowing. It is fantastic.
Those that have it done once and do not restenose, develop blood clots or intimal hyperplasia are the very lucky ones.
I agree with dania. First., they told us it is a safe procedure and the worse case scenario is your situation does not change. And there is the upside. This sounded really good.
Now, we find out that most of us get restenosed and many people's condition gets worse than it was before the operation. I am afraid that it is only the tip of the iceberg what we see here. Neurologists in the home countries of the patients talk about more serious cases. Even those who were enthusiastic about this procedure.
It is also interesting that talking to IRs not benefiting from CCSVI money have a much more balanced view on this procedure. I can also just refer to a well respected vascular surgeon whose hospital do CCSVI operations. He told us (and I can see he was reffered by others as well here on different threads) that he sees many of the neurologists concerns well founded and he sees risk in many of the currently used techniques, like using large balloon, breaking annulus, dilating veins unnecessary, etc.
It would be good to draw in other doctors into the process from different fields (IRs, vascular surgeons, neurologists). I still beleive that neurologists are key to this process, we need them.
It also makes me think why those IRs who were doing these procedures did not have any concerns about the problems we are facing today. The bottom line for any operation is to be safe, mainly when its long-term effect can not be determined yet.