Haacke's website updated Dec 29

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

Haacke's website updated Dec 29

Postby Sharon » Tue Dec 29, 2009 5:15 pm

Just in case you want to take a look - Haacke's website was updated today.
http://www.ms-mri.com/

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Postby ozarkcanoer » Tue Dec 29, 2009 5:41 pm

Sharon,

I check Haacke's site every day. Boy are you quick !! I like his FAQs except for the one question he doesn't address : when the heck am I going to Detroit to be scanned. Oh, well, patience is a virtue (or is it ?, LOL).

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Postby Sharon » Tue Dec 29, 2009 6:55 pm

OC - my mom used to tell me that you need to work on patience for it to become a virtue :wink: :wink: I know you are working on it!!

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Postby CureIous » Tue Dec 29, 2009 10:32 pm

Interesting the file transfer software he has set up on there. Looks like people (other centers) are going to be sharing info through the peer-to-peer transfers. This is good, very good... Sometimes the internet's a good thing...

Mark.
http://nice-mri.com/index.php
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 HopingHusband » Wed Dec 30, 2009 1:01 am

Thanks everyone for keeping on top of this and letting us know.

This sounds very promising and hopefully the medical world is working together more and more.
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Postby Sharon » Wed Dec 30, 2009 8:27 am

I agree Mark - it looks to me like Haacke is doing just about everything he can to get other centers to participate. Now it is a matter of getting the information to the centers
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Postby CureIous » Wed Dec 30, 2009 9:59 am

Sharon wrote:I agree Mark - it looks to me like Haacke is doing just about everything he can to get other centers to participate. Now it is a matter of getting the information to the centers


Zactly. I think there's going to be 3 or 4 centers participating when this thing gets off the ground very soon. Their work hasn't been stopped in the "halted by other interests" sense of the word, just hanging up on the ethics review board stuff, it's all politics but will all work out in the end, it's just testing after all.

One other thing to keep in mind, that Dr. Haacke is on the research end of this, he doesn't operate or fix anyone, doubt he would even offer advice in that vein. (there I go again with the no-pun-intended). This is more for people to keep in mind they are contributing to the science, plus getting a useful scan to bring to their GP's, Interventional Radiologists, Neuros and start working on a solution. That's half the battle.

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 cheerleader » Wed Dec 30, 2009 10:35 am

Thanks for the link, Sharon and yes, Mark, you are correct. We've been e-mailing the past couple of weeks, and Dr. Haacke is working VERY hard right now to get CCSVI diagnostic centers open around the world. He has been in Europe, across the states and Canada, meeting with radiologists and heads of diagnostic facilities, getting the NICE protocol into their hands. Have powerpoint, will travel.

He believes that establishing the diagnosis and having a specific protocol is the first step- and that once there is worldwide evidence of CCSVI, the treatment will follow.

He's raising funds thru his MS MRI Foundation
http://mrimaging.com/donate.html
and in Canada, at McMaster University
https://awc.mcmaster.ca/awc/MakeAGift.aspx
Still 2 days to make that tax deductible donation for 2009!
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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