Full Version Of Dr Zamboni's latest paper

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

Postby CRHInv » Sat Dec 05, 2009 8:22 pm

I am with Rose, I feel so much better! I can think, speak without slurring and find words. Being somewhat normal actually feels sort of super-hero like! You guys know what I mean, right?
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Re: UK MS Society medical advisors 'unconvinced' by Zamboni

Postby NHE » Sun Dec 06, 2009 3:49 am

Squeakycat wrote:Last week, early news of Dr Zamboni's novel theory sparked international interest and has led to scientists at the University of Buffalo in New York to test his theory by recruiting for a large study.


This statement is also inaccurate and misleading. The study at Jacobs Neurological Institute in Buffalo, NY has been going on for at least 5 to 6 months or more.

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Postby CureIous » Sun Dec 06, 2009 4:02 am

CRHInv wrote:I am with Rose, I feel so much better! I can think, speak without slurring and find words. Being somewhat normal actually feels sort of super-hero like! You guys know what I mean, right?


Oh yeah forgot about the "sounding like a drunk guy" when I don't even drink part haha. That's gone too. Good riddance I say... I know for the first weeks into the 2 months part, apart from the misery that was coumadin, it was like a new experience every day. I compare it to something like the stomach flu, when you are finally well enough to eat again, its by far the best food you ever had... I'm absolutely appalled at what Rose went through with the INR. There has to be a better way to instruct people on the way out so they don't just take some "medical professional's" word to test one way or the other. Reprehensible. I had mine set up ahead of time, but it was an open order at a walk in lab, so if I thought things were getting too yo-yo I did 1, maybe 2 tests a week for a time.

Rose I don't know how you did it but you did it but you should NOT have had to gone through all of that.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ClaireParry » Sun Dec 06, 2009 4:04 am

LMAO vendredi5h!!

How funny, you are so right....

CRHInv and rose2, thank you so much for letting us know how you are. It always makes me feel quite emotional hearing from people like yourselves who have had the procedure.

The Profs negative comments made me feel quite down yesterday.

I'm definitely in your gang!!

Claire
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Postby Arcee » Sun Dec 06, 2009 7:49 am

Two other things that came to mind when I read this thread:

- The Buffalo study design not only addresses the concerns expressed about previous study design, but in their press release from Buffalo earlier this fall, the top officials from the University hospital made a comparison to ulcer research. That is Nobel Prize of Medicine award-winning research. As many of us noted at the time, hard to imagine they are sitting on weak or negative data with that kind of comment.

- And, for me, having CCSVI addressed through stenting was never about how it would feel right away. It's about minimizing or stopping progression. No one - -not that Dr in the UK, nor Dr. Zamboni nor Dr. Dake - - knows (yet) what it will mean for progression. For me, it made sense to try, to have the blood flowing while they research and argue for years.

Having said that, I also should point out what I have said previously: to my surprise, I actually have felt a difference. When I was still in the hospital at Stanford, I felt that my energy and intake of the world became clearer, like flipping to HD. Yes it could be a placebo effect, and if that is true, then it should wear out at some point. It hasn't yet.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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