I am much better than I was in May - before my first procedure, and much better than I was in September - before my second procedure. I am having a relapse right now, but I have not had a relapse for years - I was just steadily getting worse. I am certain that I had become "Secondary Progressive"., but now, it seems to be back to RR. Is that positive? I hope so. Is it a reversal of the disease course - even if not immediate? I'll know in time. My first PTA lasted about a month, and the second made no real difference - because my veins would not stay open, and I did not take a stent. The two biggest benefits for me seem to be less fatigue, and better cognition - but just in the last few weeks, and the procedure was almost 2 months ago. I still definitely have "MS", but it is more like 6 years ago.
A caveat: I have undertaken a protocol targeting bacteria (which I believe is involved with my case), so there is a confounding variable. I do not know if my questionable benefits are residual of the second procedure. I doubt that, as the 2nd did not much for me, and I don't think that messed up valves and stenosis just spontaneously improved after an incomplete procedure. I can say that the two procedures did not make me worse. There are people who get worse even though their veins are patent. What is Dr. Simka's "unknown factor"? I think it is bacterial.
outside the box ideas inc.
Sad but true indeed. I am a testament to that.Gordon wrote:Proof is unfolding before our eyes... People that restenose or blood clot up there lberated veins get worse MS wise very quickly.
Sad but true
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Proof is unfolding before our eyes... People that restenose or blood clot up there lberated veins get worse MS wise very quickly.
Evidence from thousands who have undergone de-stenosis says that their MS symptoms are no worse in the vast majority of cases. The majority of pwMS who undergo de-stenosis experience an improvement in the symptoms, according to research neurologist Dr David Hubbard. These are real clinical experiences of pwMS. The risks of being an early adoptor of any novel procedure is that the diagnosis and therapy are being developed and may change after my/your therapy.
My view is that there is reasonable evidence for someone with MS (that is progressing) to get a selective venogram to search for stenoses and balloon venoplasty to de-stenose any found. If you are risk adverse then wait for more evidence. But remember proof rarely happens in biological sciences, despite Gordon's view.
I am talking about REstenosis. 1st op in Aug, several things got better fot a while. Now things are just about back to pre-op. I had an US that showed at least one area is back that was ballooned.Lyon wrote:MarkW,
Gordon and pklittle are talking about RE stenosis and you are talking about DE stenosis.
With all due respect, how would Dr. David Hubbard, or anyone for that matter, know the experience of the majority of those who have undergone de-stenosis (as you put it)?MarkW wrote:The majority of pwMS who undergo de-stenosis experience an improvement in the symptoms, according to research neurologist Dr David Hubbard. These are real clinical experiences of pwMS.
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AND you want to dismiss the individual reports (as anecdotal and not part of a blinded study) ...
When is IT ever going to be enough?
You're right though, my wife had results after liberation ... they were good. In my opinion, that is all that matters to me! When she says there is something to being liberated of CCSVI ... that's good enough to me.
What will ever be good enough for you "skeptics"???