Live Web Conference - What do we know about CCSVI with a star-studded cast

Today was an important step forward in the education of the masses in regards to CCSVI.  At 12pm EST there was a live web-cast sponsored by the National Multiple Sclerosis Society and American Academy of Neurology, with a panel that included: 

Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy

Dr.  Robert Zivadinov, Associate Professor of Neurology, University of Buffalo, State University of NY

Dr Andrew Common, Radiologist in Chief, St Michaels Hospital, University of Toronto, Ontario, CA

Dr Aaron Miller, Professor of Neurology  & Directory of the MS Center at Mount Sinai, NY

There was a live audience of members from various news and print media organizations, and it was broadcast internationally over the web.  The session was moderated (quite well I thought) by Jay McBride.

Its a little under 2 hours long, you can watch the recorded webcast HERE.

Overall I was quite pleased with the webcast.  There were some very interesting facts put forth, and at times the tension was quite visible.  Once I’m able to go back and watch it again I’ll try and dissect some of the specific comments made, but for the time being here are the highlights:

• Dr Aaron Miller was not dismissive of CCSVI, he absolutely said it’s an avenue or ‘lead’ that should be followed.  He talked about current MS therapies and how they have shown for years to help MS patients and that he did not think MS patients should be abandoning their current therapies for CCSVI diagnosis and treatment.  Dr Miller mentioned a couple of times that the MS society was going to be funding new studies into CCSVI (to be announced in June), and that work in these studies should be starting in July.

• Dr Zamboni talked about his studies to date, and some of the studies they are currently working on and hope to get started with soon.  He talked about CCSVI, what it is and how they are diagnosing it.  One of his slides displayed percentages of MS patients vs healthy controls that have tested positive for CCSVI in various geographical regions, which was overwhelmingly supportive of a MS-CCSVI correlation globally.  He took a very aggressive question on the relation of iron deposition to MS and other diseases like Parkinson’s and Alzheimer’s, and from my non-medical background seemed to knock it out of the park – actually looking a little aggressive himself which was nice to see.  He expressed concern at patients getting treated without the right doctors and proper procedures being followed, yet made a heart-felt plea at the end for Neurologists to use compassion in working with IRs to help patients who have no other treatment options.  Multiple times he talked about angioplasty being safe, and repeatable, that the Azygos vein responds extremely well to ballooning and that the position of the jugulars could very well present other treatments options (more traditional surgery perhaps) if restenosis keeps happening.  Overall I think it was his best presentation to date and will easily be the most viewed in a relatively short time as many reporters as there were there.

• Dr Common talked more about Interventional Radiology itself and the venous system.  It was a good balance and very informative as many MS patients and families will have more limited understanding of this anatomy.  He has not treated any patients for CCSVI, but is getting many calls by MS patients to offer the Liberation Procedure.  He shared some of the potential complications of angioplasty and stenting (actually made an interesting comment, saying the one patient who had a stent migrate to his heart didn’t need to, but had open heart surgery….the didn’t need to part was a first I’ve heard on this individual case).  I don’t think Dr Common was asked to provide much more info than he did, but it was a nice job talking about the venous system in an easy to understand way.

• Dr Zivadinov’s presentation was perhaps the most interesting and I won’t comment much on it here as I’ll dedicate an entire post to dissecting some of the numbers and information he presented regarding the BNAC studies.  I will say Dr Zivadinov was very adamant about patients not flying all over to get treated just anywhere, that at the least it should be under IRB watch and done in coordination with a Neurologist.  Keep in mind that Dr Zivadinov is a researcher, and he understands what needs to happen for the CCSVI-MS link to become accepted medical knowledge and it’s controlling this early treatment of patients to make them factual as opposed to anecdotal evidence and I applaud his advice.  Again, another post on his presentation to come later.

There were over 7000 questions posted by online viewers….wow.  I think this will be the media breakthrough the MS community has been looking for in CCSVI awareness.