Why refering to buffalo study and not Kuwait

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

Postby bestadmom » Wed May 26, 2010 8:49 am

Buffalo did do an mrv in the study plus the TC Doppler. I was in it. They cannot image the azygos. They can only infer.
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Postby BooBear » Wed May 26, 2010 9:16 am

Thanks for clarifying, bestadmom. No venography, though, correct?
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Postby bestadmom » Wed May 26, 2010 9:24 am

BooBear,

No venography, just noninvasive tests and a very in-depth questionnaire.

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Postby patientx » Wed May 26, 2010 9:43 am

mshusband wrote:Doppler is known not to be the best test.


According to whom? In his study, Zamboni found 100% correlation between reflux seen with Doppler sonography and stenoses seen with venography, in both patients and controls. Also, according to the CCSVI theory, the root problem is reflux in the circulation, which would be detected by Doppler sonography.

So don't quote 60% when we know that's false, and with venography it's been proven to be found in the upper 90%s.

Sign those of us up for venography (invasive or not I'm in ... maybe Dr. Sclafani will do that?) and let us prove that CCSVI doesn't exist in the non-MS population.


The first Buffalo study showed CCSVI does exist in non-MS population. The CCSVI being detected in controls would not be explained by the sonography lacking sensitivity.

I think you should follow your own advice. The group at Buffalo did a fairly rigorous study, and actually published their results, and came up with 60% of MS patients showing CCSVI. And you claim to know their results are wrong. Yet, you're quoting a 90% number that comes from where?
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Buffalo study - Correct me if I am wrong

Postby Gordon » Wed May 26, 2010 10:07 am

Controls were relatives of MS patients
They only used doppler
They had trained using doppler for a realtively short time


Kuwait studies are coming in close to Zambonies, almost exactly as are Simkas
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Postby bestadmom » Wed May 26, 2010 10:20 am

Gordon,

I was in the BNAC study, #248. They did not just do doppler. They did MRi and MRV. I have my disk.
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Re: Buffalo study - Correct me if I am wrong

Postby Cece » Wed May 26, 2010 10:28 am

Gordon wrote:Controls were relatives of MS patients

When you look at the results, however, it didn't make a difference among the controls whether or not they were related to an MS patient: both the normal controls and the controls with an MS relative had approximately the same incidence of CCSVI.

Buffalo's results are ground-breaking...they were blinded, they were controlled...and the finding that a majority of MSers also have the CCSVI blood flow condition is a good starting point for future research.
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Postby Trish317 » Wed May 26, 2010 10:37 am

Personally, I think even 60% is a huge number. It certainly shows a correlation that should not be ignored by the naysayers.
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Postby ozarkcanoer » Wed May 26, 2010 10:50 am

Hmmmmmm.... How did I get those images showing the stenosis in my right jugular vein at C1-C2 if BNAC does not do MRV ???? I must be confused. I guess the data came from the Wizard of OZ !!!

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Postby Cece » Wed May 26, 2010 10:52 am

I think the Buffalo results changed the conversation from: is CCSVI even real? to: CCSVi is real, but what does it mean?
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Postby ozarkcanoer » Wed May 26, 2010 10:53 am

Oh, and another thing, about doppler ultrasound.... The flap in my left jugular vein did not show up on the MRV but DID show up on the doppler ultrasound. Seems like you need to do both. Also, my stenosis showed up on BOTH the MRV and doppler ultrasound giving me double confirmation.

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Postby ozarkcanoer » Wed May 26, 2010 10:55 am

Gordon, when I had my doppler BNAC was using the new machine from Easote with added software to aid in detecting problems in the deep cerebral veins. I was studied for about 1 1/2 hours by the sonographer with a representative of the doppler company present.

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Postby MrSuccess » Wed May 26, 2010 11:21 am

I have said this before . I repeat..... people with stenosis in their veins are not healthy controls

It is logical that those people with proven vein blockages ... but showing no other sign or symptom of MS .... are living in fear of developing MS.

It is monsterous to wait and see if these controls go on to develope MS ...... just to prove a point :twisted: :twisted: :twisted:

These so-called healthy controls should be given CCSVI corrective care ASAP. :!: :!: :!:





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Postby BooBear » Wed May 26, 2010 11:36 am

Did I read somewhere that one of the "healthy" controls who tested positive for CCSVI in the Buffalo study was diagnosed with MS six months later? Does anyone have solid facts on this one, or is this urban legend?

This individual would be a significant contributor if they were willing to step forward!

I wonder if the test for CCSVI causes the placebo-effect of MS when you are told it is positive. :twisted:
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Postby Trish317 » Wed May 26, 2010 1:25 pm

BooBear wrote:Did I read somewhere that one of the "healthy" controls who tested positive for CCSVI in the Buffalo study was diagnosed with MS six months later? Does anyone have solid facts on this one, or is this urban legend?

This individual would be a significant contributor if they were willing to step forward!

I wonder if the test for CCSVI causes the placebo-effect of MS when you are told it is positive. :twisted:


When my darling man gets his CCSVI diagnosis and treatment, I'M going to be the one experiencing the "placebo effect". He's so pragmatic about it all and I, on the other hand, believe in miracles.

I'm making a little joke but I'm sure my point isn't lost on those of you anxiously waiting to be tested and treated.
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