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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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adamt
PostPosted: Mon Jul 12, 2010 1:34 pm 
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Does anyone know how long his waiting list is for CCSVI treatment?

also does anyone know the price charged?
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Daisy3
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PostPosted: Mon Jul 12, 2010 2:43 pm 
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I think he is unable to perform the procedure at the moment.

Not sure what the price is etc.
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Cece
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PostPosted: Mon Jul 12, 2010 3:12 pm 
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In the recent NYT article, he said that his waiting list is 300-400 patients long.

But as the wait goes on, a lot of people are finding treatment from the guys in Albany or elsewhere. So the list has to be shrinking.

I am not sure of the price. The people I know of who were treated by him had it covered by insurance.

He is working on an irb proposal but it is not yet submitted. So he is maybe two months out from having an irb approval at the best? And we do not yet know how his next proposal will differ from his last one.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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ozarkcanoer
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PostPosted: Mon Jul 12, 2010 3:38 pm 
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Maybe Dr Sclafani will be able to recruit more IRs over the next couple of months so more MS patients can be treated !!! What a wonderful thing that would be.

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Cece
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PostPosted: Mon Jul 12, 2010 4:04 pm 
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I think more and more IRs are getting into this...which we absolutely need and I am very glad for it...but I also think we need the research to be done and that is where we're getting the irb hassles and shutdowns. :(

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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belsadie
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PostPosted: Tue Jul 13, 2010 10:26 am 
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Just got an e-mail from Holly Barr dated yesterday an 1:54 PM: "I regret to inform you, if you haven't found our from other sources by now, that our IRB turned us down. Under the circumstances, there is no treatment timeline prediction possible. I am very sorry, but if treatment in the foreseeable future is your goal, you would need o go elsewhere."
My response: THIS SUCKS!
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pinksapphire
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PostPosted: Tue Jul 13, 2010 11:43 am 
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HI!
Was just wondering how you contact Dr. Scalafani? Anyone know?

Thanks
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Cece
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PostPosted: Tue Jul 13, 2010 11:46 am 
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Post a question in his thread here or email ccsviliberation@gmail.com for Holly....

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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pinksapphire
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PostPosted: Tue Jul 13, 2010 1:59 pm 
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Thank You :D
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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