Trying as hard as I can for CCSVI

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

Trying as hard as I can for CCSVI

Postby mshusband » Tue Feb 02, 2010 2:09 pm

I wrote to the president of the University I went to (don't want to give any names but it's one of the biggest schools in the country - so you can probably get your list down to under 25 schools and figure it out based on where I live).

He (the president)'s actually (for as busy as he is) very good at writing back to people who he's probably shaken hands with a few times ever (probably helps I'm a grad student as well and have a .edu email address).

So anyway, I wrote him about CCSVI and about potentially contacting the heads of certain departments at the medical school for my University and having them pushing the Intervential Radiologists and Neurologists at our medical school to look into this and see if my wife could go there.

I actually got a very nice email back from the president, as well as one from the senior vice president and dean of the medical school after the president copied him on it (he is an MD). They are going to have their team look into the research, and see if they would consider pursuing this type of treatment, and get me in contact with some people who my wife and I can get with further.

I know it's not much, but the fact that these two guys who don't know me, yet have considerable influence over the direction a medical program at a major teaching medical school would go, and took the time to at least read what I had to write and consider it ... made me smile just a little bit inside. Even if it's just to open someone's eyes that CCSVI is out there ... who knows, maybe it'll actually lead to something.

Right now that medical school is big into pediatric cancer ... but maybe they'll move on to CCSVI as well!
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Postby Mechanicallyinclined » Tue Feb 02, 2010 2:35 pm

good work! You have their attention, that's a plus!
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Postby ozarkcanoer » Tue Feb 02, 2010 2:38 pm

mshusband,

I think this is great ! It IS "a lot". Thank you for your efforts for CCSVI.

ozarkcanoer
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Postby Arcee » Tue Feb 02, 2010 2:52 pm

And you never know if the person reading a letter has MS or is close with someone who has MS. One letter like this could hit the right person and who knows what will happen...
Thanks for sharing the good experience.
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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Re: Trying as hard as I can for CCSVI

Postby lucky125 » Tue Feb 02, 2010 4:22 pm

[quote="mshusband"]I know it's not much, but the fact that these two guys who don't know me, yet have considerable influence over the direction a medical program at a major teaching medical school would go, and took the time to at least read what I had to write and consider it ... made me smile just a little bit inside. Even if it's just to open someone's eyes that CCSVI is out there ... who knows, maybe it'll actually lead to something.
quote]

It IS much! It is amazing what one email can do. God bless the WWW, and tenacious husbands like you. Your wife is one lucky lady. :wink:

p.s. sorry I don't know how to use the quote feature effectively yet, but you get my point!
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Postby shye » Tue Feb 02, 2010 4:28 pm

thanks MSHusband--great work! Can't imagine they won't help you now...
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Postby CureIous » Tue Feb 02, 2010 4:43 pm

Bravo, well done. If I said it once, I said it a thousand times, only dumb question is the unasked one!!

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 SandyK » Tue Feb 02, 2010 7:08 pm

That's great news! I have written so many letters I often wondered how many hands it has passed through...now I feel more confident in that someone is really reading them. Thank you for your efforts!
Diagnosed 1994, Self EDSS is 6.5
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