Buffalo is in business !!

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

Buffalo is in business !!

Postby ozarkcanoer » Mon Mar 08, 2010 11:46 am

Hi,

I just had a call from the BNAC about 1/2 hour ago. They wanted more information for my application for their CCSVI diagnostics package. They are moving right along with CCSVI business. I think the "on hold" problem was just growing pains because the woman who called me told me they are gearing up and scheduling doctors and making phone calls !!! I don't have a date yet, but of course I asked about that. I was told it would be anywhere from 2 weeks to 2 months. Now I am excited all over again. :D :D

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Postby lucky125 » Mon Mar 08, 2010 12:10 pm

So excited for you!!!!!!!!!
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Postby TFau » Mon Mar 08, 2010 12:38 pm

I'm excited for you too, oc! Good luck!
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Postby magoo » Mon Mar 08, 2010 1:15 pm

I can't wait for you to get there OZ!!! You have worked so hard:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby ozarkcanoer » Mon Mar 08, 2010 1:27 pm

Thanks, magoo !! I've had 2 potential scans postponed/cancelled so I feel like I have been on a roller coaster. This one WILL WORK OUT !! And I feel confident that BNAC is the best place to go, aside from Dr Zamboni and Dr Dake.

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buffalo is in business

Postby miranda » Tue Mar 09, 2010 1:27 am

I wish you good luck with your ccsvi testing I can understand your excitment

My son has applied for ccsvi testing on February . We live in Greece and
I hope they will call for an appointment .

Great news! :D
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good luck

Postby mdc » Tue Mar 09, 2010 2:12 am

I'm happy that BNAC goes the right direction. good luck ozarkcanoer
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BNAC

Postby LSITC » Tue Mar 09, 2010 3:11 am

V happy for you - good luck and keep us posted :D
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CCSVI diagnostic update

Postby christophelux » Mon Mar 15, 2010 3:05 am

Seems they are pressed by Neuro community to refrain from calling it a diagnostic. I am afraid next step will be the cancellation of the testing. Has anyone more news?

Apart form the diagnostic, the Combined Transcranial and Extracranial Venous Doppler (CTEVD) study is supposed to be presented in April with the FULL results of the first 500 people. Any information about this (exact date). And what about the next people to be enrolled? already started?


http://www.bnac.net/?page_id=561
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Postby ozarkcanoer » Mon Mar 15, 2010 8:43 am

I don't think there was pressure from the neuro community to not call it a diagnostic test. CCSVI is still in the research mode and the word "diagnostic" implies a general acceptance of CCSVI as an accepted condition. BNAC is still going to be testing people and will be giving us our results. But they are now calling it an open label trial. The results of all the people tested can be considered research. We will get our "results" (ie of the doppler ultrasound and MRI/MRV). We won't get a "diagnosis". All these words are fraught with meaning for doctors and researchers and everyone involved must go forward very carefully.

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