FYI - Buffalo ccsvi study

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

FYI - Buffalo ccsvi study

Postby mickb » Mon Nov 16, 2009 1:25 pm

Hi All:

I just got into the Buffalo Study, Dr Weinstock Guttman is my neuro. I have already received the doppler test and I'm scheduled for the MRI Dec 5th. I just discovered that their not doing the MRV as part of the study anymore. They only planned to do an MRV on the first 250. So, I missed out. Also, they only do an MRI on the brain but my lesion is in my spine?
odd. I guess they're looking for iron- maybe it doesn't show up in the spine.

My next big hurtle will be getting info about my blood flow and whether a stent is justified. I don't know if I can get the doppler results when the study is unblinded (soon) or not? Then, can I convince the ins. company to accept it?

I'm hoping there will be another "intervention" study but I haven't heard anything yet -

How do most people get the MRV and then approval for surgery?

They really didn't want to talk about how / when to take the next steps.
I am convinced this has to be pursued "vigorously". Maybe I can make some better progress at my next appt on Dec 8th.

Any experiences on the "HOW TO PROCEED" deliema would be most appreciated. Just for the record I'm not on any treatment except diet, and was dx'd ppms in 2001

BTW It really bugs me that Jacobs is funding this study themselves

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Postby ozarkcanoer » Mon Nov 16, 2009 1:38 pm

That's some good info, mickb... keep us posted, OK ?
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Postby kjwxau » Mon Nov 16, 2009 5:55 pm

I myself just recieved the call today for the doppler at UB. If you find any answers to your questions I would be very interested. I have asked around about stenting and every person said they wouldn't use a Dr in Buffalo. There has to be some UB participants that got stents? Kim
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Postby cheerleader » Mon Nov 16, 2009 6:22 pm

Just to clarify-
UB/JNI has been participating with Dr. Zamboni for the last 2 years in testing patients for CCSVI. Dr. Zamboni used a ballooning technique to open stenosis on 16 patients (8 American/8 Italian) This ballooning is called the "Liberation procedure". When I read Dr. Zamboni's research last year and contacted him, he told me he would not be able to treat Americans outside his study, so I took Dr. Zamboni's research to Stanford, where Dr. Michael Dake has seen some 60 patients since my husband's jugular stenosis was stented last May. Dr. Dake is not working with JNI or Dr. Zamboni, he is utilizing the research to continue his own studies and treatment.

I do not know if JNI has any plans to treat anymore patients with the Liberation procedure. At this point, it appears they are more concerned with establishing scientific proof of the correlation of CCSVI and MS.

Jacobs and Zamboni and Dake are "self funded" because it is very hard to get research money for a non-pharma model of MS research. Not impossible, but not easy.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby mickb » Wed Nov 18, 2009 9:51 am

Thanks for the reply's everyone.

Cheer- thanks for the clarifications. Sounds like your very well informed!
Kim - we should keep in touch. We'll probably be in the same boat.
I've found posts about Dr. Patricia Coyle of Stony Brook University (long island NY). It looks like they may be planning to do the testing and "liberation" procedures in cooperation with Jacobs and
Dr. Zamboni. I called and left a message but alas- no reply's yet.

I plan to keep trying until I'm certain that any
vascular problems I may have get fixed, one way or another. This CCSVI hypothesis and subsequent data just seems undeniable to me!

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East Coast CCSVI study

Postby SammyJo » Fri Nov 20, 2009 7:01 pm

Please PM me for further info, if you are trying to find a study or treatment on the East coast.
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