Is it poss. to get a count of how many have been tested?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Is it poss. to get a count of how many have been tested?

Postby zanne10000 » Sun Jan 02, 2011 5:39 pm

Hi:

I first asked my neuro about CCSVI in Dec. 2009, about a week after the news broke in Canada. She called it "roto-rooter". I asked again at my 6 month f/u. She was still not very enthused or interested about it.

Now it's a year later, I see her in 10 days and I want hard, fast evidence to show her. Is there anywhere to get an accurate/semi-accurate count of how many people have had the testing and treatment? I know a few numbers here and there, i.e. Hubbard (125), Albany (180), Zamboni, etc. But there are places such as Mexico, Kuwait, Poland, Bulgaria, Egypt and numerous physicians in the US who have done a hundful. Is there anywhere keeping track of all the procedures?

It's frustrating to me because I am on Tysabri (Diesaybri) and the risk from angioplasty seems much lower than the risk of PML from taking Tysabri!

Thanks in advance!
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Postby Cece » Sun Jan 02, 2011 5:47 pm

MarkW started a thread on this awhile back.
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Postby EJC » Mon Jan 03, 2011 3:38 pm

Essential Health Clinic Scotland- numbers based on a conversation last week with the surgeon.

Circa 1000 scanned with a further 800 on the waiting list
Currently 45 or so procedures and increasing.
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Postby CureIous » Mon Jan 03, 2011 10:21 pm

I think we would all love to know these numbers across the board, good bad or otherwise, unfortunately there is no CCSVI clearinghouse that will give you what you are looking for, just dribs and dribs from here and there, which I guess are a small representation of the real numbers which we will never know, but, hopefully with the Hubbard registry and other instititutions tracking of patients, a clearer picture will begin to emerge. You'll be hard pressed to bring any publication to your neuro that states "x numbers treated worldwide with y results".

If and when a double blinded placebo controlled sham treatment trial is brought to fruition and summarily published, it will be worth much more than anectdotal evidence from many hundreds on the internet, as far as your neuro is concerned, even if they DON'T bite...

That's making an assumption that it shows what we think it will show, all skepticism aside for arguments sake.
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