CTEVD Study at Buffalo Neuroimaging Center (CCSVI related)

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

Postby jay123 » Fri Oct 02, 2009 5:57 am

I think I read the first 250 patients will get both, but there is limited time in the machine for the study to use so it will be a longer wait them then the doppler.
User avatar
jay123
Family Elder
 
Posts: 381
Joined: Mon Sep 21, 2009 2:00 pm

Advertisement

Postby Sneaky » Fri Oct 02, 2009 11:55 am

I looked into this, sent them an email and offered to be involved. They responded that since I am yet undiagnosed that I really wasn't a fit, but would keep my info on file if they expand their parameters. Just glad to see others looking into such avenues.

Being in Cleveland, I've been keeping an eye out for the Clinic to get involved somehow.

Mike
User avatar
Sneaky
Getting to Know You...
 
Posts: 19
Joined: Thu Sep 17, 2009 2:00 pm
Location: Cleveland OH

Postby Sawdoggie » Wed Oct 14, 2009 10:11 am

I am signed up to participate in the beginning of November. The University of Buffalo put out a nice press release on the study today. We'll see if any news organizations pick up on it.

http://www.buffalo.edu/news/10562
User avatar
Sawdoggie
Family Member
 
Posts: 63
Joined: Mon Sep 07, 2009 2:00 pm
Location: Cincinnati, OH

Postby cheerleader » Wed Oct 14, 2009 11:23 am

Sawdoggie wrote:I am signed up to participate in the beginning of November. The University of Buffalo put out a nice press release on the study today. We'll see if any news organizations pick up on it.

http://www.buffalo.edu/news/10562


Good find, Sawdoggie. Glad to see them going public-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5071
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby jennifero » Wed Oct 14, 2009 1:06 pm

all I can say is Buffalo is on to something just like Avonex was created in Buffalo. Take the car ride and meet the neurologists who are already involved with a second study re:CCSVI.
User avatar
jennifero
Newbie
 
Posts: 5
Joined: Wed Oct 31, 2007 3:00 pm
Location: WNY

Postby radeck » Wed Oct 14, 2009 2:43 pm

Thanks Sawdoggie, that just made my day. The fact that they are so explicit and call it a possible "cause of MS" gives me a lot of hope. It's just too bad for their patients that they won't know the outcome of the testing and have to go elsewhere for treatment. But I suppose one can't expect Buffalo to take care of each step.
radeck
Family Elder
 
Posts: 398
Joined: Mon Feb 16, 2009 3:00 pm

Postby muse » Wed Oct 14, 2009 3:21 pm

That’s just great! The “Bologna-Spirit” is behaving know like a nasty little virus! :wink:
In Germany the University of Jena (Prof. Reichenbach!!!) examined the first MS-patient with a SWI-MRI and for that they used the protocoll of Prof. Haacke. The liberation procedure of the stenosis they have found will be done by the protocoll of Prof. Zamboni. :D
Unfortunately the most physicans in New Zealand are still behaving like blessed ignoramuses. But a change is gonna come it’s just a question of time!
Best muse
http://csvi-ms.net
User avatar
muse
Family Elder
 
Posts: 180
Joined: Wed Aug 05, 2009 2:00 pm
Location: New Zealand

Postby Sawdoggie » Wed Oct 14, 2009 6:29 pm

The way I am looking at study is that it is what it's going to take to get the ball rolling and gain acceptance if the results come out like we all expect them to. Whether I see my individual results, while that would be nice, or not is insignificant in the big picture. I'm pursuing Stanford at the same time as well as trying to drive up some local interest. Participating in this study was a no brainer as there is no risk, just a little bit of travel costs, it has the potential to make a very large impact on the future of MS, and what the hell, I'll get to finally see Niagra Falls while I'm up there. I can't wait!
User avatar
Sawdoggie
Family Member
 
Posts: 63
Joined: Mon Sep 07, 2009 2:00 pm
Location: Cincinnati, OH

Postby Jamie » Wed Oct 14, 2009 6:52 pm

Just read the whole article.

It is Neuro's at the centre who are studying and finding it as well.

That is splendid.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

Postby mrhodes40 » Wed Oct 14, 2009 7:38 pm

really great article to read, wow! I liked the rather assertive nature of it; to me it is far less wishy washy and tentative than other articles we have seen. They refer to it as poss. cause, and they refer to using CCSVI treatment early before damage happens which reaffirms they are thinking of this as possible cause, not a mere co factor. These are very affirmative statements that suggest in no uncertain terms these people are taking this VERY seriously...as a paradigm equal in plausibility to autoimmunity.

The tone of some other releases have been kind of "well this guy over in Italy has this wacky theory...." and were also filled with affirmation and defense of the current AI paradigm.

This article notably lacked it and in fact had the paragraph that said that research has been showing there is a real problem with the autoimmune model and that neurodegeneration is at least as important...then suggest that CCSVI may well be the answer to that conundrum.

It was great to read.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby cheerleader » Wed Oct 14, 2009 7:57 pm

Notice the first unblinded study results come out in November.
The data will be unblinded at three predetermined time-points, with the initial unblinding scheduled for November 2009.

Feels like a "build up" to that future press release. Sure doesn't sound wishy washy, you're right Marie! For all of those neuros, the dean, and the chief medical officer at the hospital to speak on the record, with their names and titles, and lots of quotes about changing the paradigm...they must feel pretty good about what they are unveiling.
I posted the whole press release up in general land, just because...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5071
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Sawdoggie » Thu Oct 15, 2009 5:10 am

Local Buffalo television picked up on yesterday's news release (http://www.wivb.com/dpp/news/health/UB_ ... S_20091014). I'm not sure if they feed into any pools or who their affiliation is with, but it is a start.
User avatar
Sawdoggie
Family Member
 
Posts: 63
Joined: Mon Sep 07, 2009 2:00 pm
Location: Cincinnati, OH

Postby bestadmom » Thu Oct 15, 2009 5:14 am

I googled CCSVI, Buffalo, Zivadinov, etc last night and only got the press release from BUffalo on their site. I pull news stories from PR Newswire for my work so I checked the health section, and nothing.

I emailed the PR person last night at Buffalo to ask her to push the story out. I asked if I can help. We'll see if I hear back.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 2:00 pm
Location: CT

Postby Sawdoggie » Thu Oct 15, 2009 5:16 am

Public radio picked it up as well with nice coverage... http://www.publicbroadcasting.net/wbfo/ ... .Sclerosis

I am curious to see how many more pop up today through google alerts!
User avatar
Sawdoggie
Family Member
 
Posts: 63
Joined: Mon Sep 07, 2009 2:00 pm
Location: Cincinnati, OH

Postby Sharon » Thu Oct 15, 2009 5:22 am

This is all so exciting!! In the video, Dr. Michael Cain alludes to a possible medical intervention to open the abnormailities in the veins - Hmm, do the stenters need to send him an email and tell him there IS a medical intervention?

The press release is very positive. It is looking at this as a cause of MS. The "cat is out of the hat" folks - here we go!

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service