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2 years ago

@colleen21 , this sounds very much like the “liberation” treatment developed by Italian researcher Paolo Zamboni in 2008. Otherwise known as Chronic cerebrospinal venous insufficiency (CCSVI or CCVI).

Unfortunately, it was hyped up by the media before proper clinical trials were conducted.

Once clinical trials were completed, it was no longer seen as a good treatment for MS.

2 years ago

Yes I have heard about CCSVI and know that clinical trails were not completed and it was stopped. I also know it was not covered under insurance; TVAM is covered. I’m at the point where I feel nothing beats a failure but a try. If FDA has approved it why not give it a try. I just feel I am young with my whole life still ahead of me.

2 years ago

I understand your situation, @colleen21 .

In the UK, we saw a few people pay out quite a sum of money to get this procedure. It was easy to find success stories, but not so easy to find the failures – it’s embarrassing to own up to wasting that kind of money.

But, if you’re not going to be out of pocket and have analysed the potential risks and benefits, then why not.

It’s not really been touted as a cure for MS, but if it gives relief from some of the symptoms then it seems worthwhile.

Good luck if you go for it.

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