Image by Beveik Rimtas via Flickr
Sorry that things have been so slow around here for the last week or so, but I've been busy preparing to give a live presentation at the Patient Education Day at the Second Annual CCSVI Update Symposium, to be held this coming weekend at the Crowne Plaza Hotel in Times Square, Manhattan (click here for details). Dr. Salvatore Sclafani, who is hosting the symposium, asked me to put together a presentation including some of my photographs for an essay on "A Patient's Perspective On CCSVI".
Dr. Sclafani is an innovative CCSVI practitioner as well as an extremely accomplished amateur photographer himself, so I was honored by his asking me to participate. Have no fears (as if), those of you who can't attend the symposium will be able to catch the presentation right here on Wheelchair Kamikaze, as I'll post the photos and words I wrote to accompany them as a series of entries on the blog.
In the meantime, here's an incredibly informative video, recorded this past March at the annual Society for Interventional Radiology meeting in Chicago. A CCSVI Doctors Roundtable Discussion was presented, which included some of the biggest names in CCSVI engaging in a lively talk which covered a broad spectrum of the issues involved with the investigation and treatment of the condition. The Roundtable, sponsored by the CCSVI Alliance (click here), offers a comprehensive and evenhanded view of many of the hot topics surrounding CCSVI. Hearing the information coming straight from the doctors’ mouths is absolutely invaluable, and the presentation is packed with highly relevant info.
The video is quite long, about one hour and twenty minutes, and was recently edited by yours truly in my capacity as a member of the Alliance's Patient Advisory Board. It is must-see viewing for anybody interested in CCSVI, even if watching the complete presentation requires multiple sittings. (Note: Those readers who receive this blog by e-mail will need to visit www.wheelchairkamikaze.com to view the video)
Marc,
ReplyDeleteThank you for your tireless work editing the footage from Chicage. It was fascinating!
Best of luck tomorrow. I am so sad to be missing it, but my daughter's basketball finals take priority over all. Sigh... I am thrilled that I won't have to miss your presentation. Thanks for sharing it with us!
xo,
Nicole
Hi Marc,
ReplyDeleteIt somewhat confuses me that it seems to be two camps in the CCSVI issue. One camp is involving bona fide doctors who believe CCSVI is worth further studies and research. The other camp, is consisting of people who are absolutely convinced that CCSVI is a scam.
Nothing is evidently proven one way or the other and the pro-CCSVI doctors also say so. So how on earth can the other camp say they know? Where is the evidence?
I seriously start believing that prestige, money or both are involved and as we know - MONEY TALKS. Sad thought.
Great editing! When do we get to see your presentation!
ReplyDeleteThat answered a lot of questions for me. Thanks.
ReplyDeleteNicole
Marc thank you for the footage and information. Not to be a buzz kill, but I had the treatment done almost a year ago with Pacific Interventionalists in CA (after affirming that I had blockages in the Buffalo study). Not only have I noticed no changes at all, I am out $10,000 and my neck still hurts. I was so hopeful.
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