NEW video: Dr. Gary Siskin speaks with CCSVI Alliance

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

NEW video: Dr. Gary Siskin speaks with CCSVI Alliance

Postby cheerleader » Sat May 07, 2011 5:03 pm

CCSVI Allliance presents Dr. Gary Siskin, Chief of Radiology, Albany Medical Center

Dr. Siskin, whose team has treated over 500 CCSVI patients, provides fascinating insight into the types of venous abnormalities he's seeing in MS patients, the effects of treatment, and his thoughts on the future of CCSVI.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby pklittle » Sat May 07, 2011 7:07 pm

Thanks for posting this.
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Postby orion98665 » Sat May 07, 2011 9:23 pm

Thanks Cheer,

Great video but I'm just curious in how the sham treatment is going to work during these clinical trials. I mean, just following the social media
including this forum of people who have gone through the procedure state
that they feel the balloon being inflated. So wouldn't an individual who follows CCSVI and the social media who is part of this clinical trial Know if they had the sham treatment or not? Or are these individuals going to be
completely sedated??

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Postby Cece » Sat May 07, 2011 11:13 pm

I think some trials are using "twilight sleep" type sedation.

I took some notes, this is from the first six minutes:

what's frustrating

not being able to look at a patient and tell them what to expect; no concrete pattern of response

what's surprising

patients who walk in with a cane and walk out without one; the impact on the patients

"placebo effect" - don't know; if they felt great a day or two and then symptoms came back, could be placebo; but patients 8 or 9 months out still feeling great, hard to believe that's a placebo

previously very unusual for IR to be working in an IJV or azygous; we've been struck by the wide variety of appearances of these veins, the degree of narrowing that can be seen in a single vein is surprising (mid portion to bottom portion) or flow is held up; when we see collateral vessels; we know something just isn't right but we don't know exactly what healthy population veins would look like

venous wall itself seems to be different?

yes, in azygous, irregularities; thickening of valve leaflets in IJV; flow abnormalities together with physical abnormalities and together that is pathology and by fixing we think we are helping those patients
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Interesting Interview

Postby MarkW » Mon May 09, 2011 3:27 pm

The 'thirds' division of pwMS response to treatment for CCSVI syndrome is fascinating. I heard the same 'thirds' division of pwMS by a neuro who was describing response to DMDs.

Why should IRs expect to predict the impact of their treatments on pwMS ? We do not know how MS is going to progress, so any treatment is probably unpredictable, as well.

I question if a full catheter venogram has been undertaken how can a decision of 'no treatment' be decided upon. If the catheter has ruptured a septum in a vein then treatment has occurred even if the envelope says 'no treatment'. I would like that explained.

Rather than leave the no treatment group waiting, I feel that a cross over trial at 6 or 12 months is more ethical. MS is not life threatening but it is progressive so the no treatment group must be treated at some stage.

Mark Walker - Oxfordshire, England. Retired Pharmacist. 16 years of study about MS.
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Postby PointsNorth » Mon May 09, 2011 4:31 pm

I like the fact that Albany is keeping to its original precepts e.g. baloon size. In the long run this serves to advance the science of CCSVI. I had 8 days of symptom relief following my Albany visit, so I got a taste for the upside of treatment. Perhaps I pursue additional intervention at a different CCSVI "school".
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