Hi all, R.E. Stanford Study, contact info, etc. IMPORTANT

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

Postby CureIous » Fri Jan 08, 2010 12:27 am

Sharon wrote:Kathryn - The practice squad is trying to help you all out -- we are not going away.
Be patient

Sharon


To whom much is given, much is required.

Yeah, nobody knows what the acceptance part is, who gets in, or how it will all work. I tried reaching Dr. D on the red Batphone, no luck. My thought has always been there will be a full spectrum of patient types, from PP to SP to RR, ages, the whole panoply. Geographical location is not one of the factors as far as I know. If you can hike/bike/fly or crawl there, you are eligible.

From what I recall though, there will be some stented/angioplastied, and some not, then at the end everyone has the option who wasn't first stented. Keeping in mind as you well stated, the ones that got bumped last year that were already scheduled get dibs.

So from that, it seems a logical presumption that some will need to make two trips out there, if they opt in for the surgery after testing of course. (assuming they have something to operate ON).

For those of us first 65/70 that are still here, I for one am at your disposal in whatever way I can help. I want EVERYONE to get the placebo effect!

M.
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 Johnson » Fri Jan 08, 2010 12:43 am

curIous wrote:From what I recall though, there will be some stented/angioplastied, and some not, then at the end everyone has the option who wasn't first stented.


That is my understanding of the proposal for the UBC study, too. Purportedly (I have no real verification), there will be 100 subjects. A percentage (50%?) will get angioplasty (we Canadians can be so conservative). If the angio recipients show remarkable improvement, my understanding is that the rest will be angio-ed (starting to sound like Farmer Brown, he had a dog...) on compassionate grounds. That is my conjecture from my limited understanding.

I have an appointment at UBC MS clinic in early Feb., and will ask the pointed questions then - including: "Can I be in the study? What are the criteria?, etc."

But this is about Stanford, isn't it?
My name is not really Johnson. MSed up since 1993
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Postby healthymama » Fri Jan 08, 2010 12:59 pm

So I sent all my info and record to Dr. Dake in early November, but never heard another word from them. I am guessing I still need to contact them to see if I am on a list? Any guesses? I would hate to bother them or clog up their email accounts.
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Postby ndwannabe » Fri Jan 08, 2010 3:18 pm

healthymama wrote:So I sent all my info and record to Dr. Dake in early November, but never heard another word from them. I am guessing I still need to contact them to see if I am on a list? Any guesses? I would hate to bother them or clog up their email accounts.


You are way more patient than I.

I sent an e-mail to Dr Dake on Monday, just asking if I can get the testing done, no response what-so-ever.

I am wondering if that e-mail is no longer active, not getting looked at or what?
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