LR1234 wrote:The thing that really bothers me is Cheer mentioned (hope I am not misquoting) that Dr Z treated those with low stenosis in their jugular veins and I got the impression that ballooning is not an option for high stenosis.
I know mine are high C2 so does that leave me with only the stents as an option?
I'll probably catch all kinds of crap for saying this, but it's impossible to say that this is a "an incredibly rare complication", since so far the surgery has only been done on about 60 people, and one of them has had a stent come loose and travel to his heart. Not much is known about placing stents in veins in general, and even less about placing them in jugular veins. All we can say with certainty is that, given the current data, there is a 1 in 60 chance of this kind of complication.
The NIH has been sternly and adamantly warning me against doing the surgery since I first mentioned it to them. They practically made me promise that I wouldn't fly off to Stanford to get the procedure. Among the reasons they cited are brainstem infarcts, blood clots, and the uncertainty of how stents would react in the CNS venous system.
When placed in arteries, which get narrower in the direction of blood flow, a loose stent only gets pushed deeper into the narrowing artery, which keeps it from traveling further and causing damage to other parts of the body. Veins, on the other hand, grow wider in the direction of blood flow, so if a stent becomes loose, there is nothing to keep it from reaching the heart.
This is a serious problem that needs to be addressed. In no way should it be minimized, or thought of as an extremely rare event. We simply do not know enough to make such an assertion. Balloon angioplasty, though not without its share of complications, is a relatively benign procedure. Placing stents in a patient's veins carries with it many unknowns, one of which has now been exposed because of radeck's extremely unfortunate experience.
This is experimental surgery. It's important to go into it with eyes wide open
I think what you said makes a whole lot of sense. There needs to be a lot of research on how to treat CCSVI. I have always wondered why Zamboni only does balloon angioplasty and never uses stents. Dr Zamboni is a smart man and doesn't want to risk CCSVI by doing too many risky preocedures too soon.
But I also understand why Jeff and others would go ahead with the stents. MS is a terrible disease and people will take risks for relief from the Chinese water torture we endure every day.
I am going for Dr Haacke's imaging in Detroit, but when I return home I have an appointment with a professor/interventional radiologist here at the medical school in St Louis. I hope he can advise me.
I was not at all trying to weigh in on the likelihood of risks or open a discussion about that. I am by no means qualified to do that! But the way my comment has been quoted looks as though that were my intent
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