There is a nearly eight minute video on this page from AAN (the Honolulu neurology conference). Here are my quick notes:
(interview with robert fox of Cleveland Clinic)
this is a new method of looking at jugular veins
if they're getting different results (one researcher finds 100% CCSVI, another finds none) they're doing the test differently
he had a poster and identified nine different parameters in doing an ultrasound based study
factors that can impact measurement of blood vessels in neck: how hard you push on transducer, hydration status of patient (dehydrated changes size and flow of jugular) compared same person hydrated and dehydrated significant changes; reflux by adjustment of knob on ultrasound can make a patient who has no reflux look like patient has reflux; critical issues to establish!
one challenge is that dr zamboni's description is not as complete as we need to replicate. which machines.
Need consensus group. So assessments are done the same way. Send same patients and healthy volunteers to different centers to see the cross comparability.
MRV venography? This is more simple and easier to put patients through. Concern is twofold: no one have shown that mrv is sensitive to detecting CCSVI; some of the subleties is beyond resolution and ability of mrv to see. He doesn't think MRV will replace ultrasound. Can it be used as a screening tool?
to what extent is the field rushing ahead of these issues and soon it may not matter, patients are already getting these procedures. Case studies, observational cohort studies, assessing the efficacy of the procedures and we'll find out from that if it is viable
Controlled randomized trial needed, would take focus effort. Series of case reports isn't going to tell us if this is truly helpful or not. If we don't know exactly what they have (what ccsvi ultrsound was done) we need to standardize even for patients getting it open label, we don't have standardized way of ultrasound, so we don't really know what patients have.
MY THOUGHTS: MRV as a screening tool before an ultrasound!! How expensive and backwards is that. Plethysmography as a screening tool before an ultrasound is something with much more potential. (Bet these guys haven't heard of plethysmography yet.) Also the call for consensus is very good, which is why at CCSVI there was a consensus meeting on the very first day, I would have to review what they decided but one was to drop the deep cerebral veins as the fifth criteria. I wish the neurologists were working in conjunction with the ISNVD group (there is an 'N' in ISNVD for a reason), they could be cutting edge too and not this far behind.