Wednesday, April 14, 2010

Web Cast - Zamboni and others at the AAN conference in Toronto

Too much information... at least that's what it feels like.  The MS world is all abuzz about the latest information coming out of the American Academy of Neurology conference in Toronto.  Zamboni was grilled by neurologists but held his own.  Zivadinov gave more details about the Buffalo study and some explanation of why that study's results were more equivocal than what Zamboni and Simka and others were finding.  For those who want to see the web cast, here is the link:  But from what I can tell from the reports of others, these are the main points to come out of it:
  1. Zivadinov reiterated that, in the main, their Buffalo study corroborated what Zamboni had found: the majority of MSers have CCSVI, - something like 70% for SPMS and PPMS people.  Their numbers were lower than Zamboni's findings, but that could have been due to the testing method... and new equipment that they now have will probably help them find CCSVI, so those numbers will probably go up
  2. They all agreed that more study is needed, but Zamboni did suggest (bravely, since he was in a room full of neurologists) that some people should be able to be treated NOW for compassionate reasons.  As I said in the CCSVI facebook page: "Given that the evidence seems to indicate (and it's common sense) that the longer you are untreated the more irreversible the damage will be, I don't see why anyone who has looked at the risks and uncertainties of "liberation" and decides to go ahead with it should be dissuaded from doing so. Seems to me that a pretty high proportion of MSers would be eligible for compassionate treatment."
  3. Zamboni did make a point that desperate MSers shouldn't go to just anybody to be treated... people need to be careful.  He also still doesn't believe in using stents... yet, since nobody knows the long-term implications.
  4. Venoplasty of the azygous vein is very effective - they rarely close up again.  And, apparently, there is some evidence that the rate of restenosis of jugular veins can be reduced with more effective methods.  This would mean that the (more dangerous) stents wouldn't have to be used as often.
If, over the next few days, I find any more useful summarizing information, or a good summarize source, I'll paste it here. But I give my exam tomorrow, so may not have much time to do it, so if anyone else finds a good source that distills all the information, or thinks I missed an important point, let me know.

ALSO: Here is a different summary AND more detailed notes on the CCSVI facebook site:!/pages/CCSVI-in-Multiple-Sclerosis/110796282297?v=app_2347471856

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