CCSVI Alliance’s Doctors’ Roundtable Discussion and Consensus Council
Society of Interventional Radiology (SIR) Conference
The Doctors’ Round Discussion on Tuesday, March 27th was a tremendous success despite a rainstorm and blowing wind. Spirits were not dampened however and, while we had fewer in attendance than expected, those who did arrive were energetic and engaged. It is always a joy to finally put a face to a name – to shake the hand or hug someone I have talked with on the phone or exchanged emails. We also were honored to have Bay Area doctors and other healthcare professionals in the audience.
Presentations by Bulent Arslan, MD and Gary Siskin, MD were excellent; Mike Dake, MD moderated a discussion between Jack Burks, MD and Douglas Goodin, MD which will be of interest to not only the MS patient community but to the interventional and the neurological community. The panelists were called to the stage for the final hour for Q & A’s. The conversations were substantive and engaging. Thanks to all of you who submitted your questions. We are sorry if yours did not get answered, unfortunately there is never enough time. The Roundtable Discussion video will be edited in the next week or so, and we will post it on our website.
Jeff Beal was not listed on our program (this was intentional) …so, it came as a complete surprise to Mike Dake, MD to be introduced by his first patient. Jeff spoke passionately about his improvement in the quality of his life since being treated at Stanford. I would like to recognize Florence D’Eon who came in from Canada to attend and volunteered at the event registration table and as our onsite photographer. Also, thanks to the Bay Area MSketeers and especially to Carol and Scott Schumacher for organizing and funding a Wine & Cheese Reception for the doctors afterwards.
As you know, CCSVI Alliance has remained focused on education and the support of research relating to CCSVI. We understand that in order for the science to be proven, collaboration between the medical and scientific community is essential. Towards that goal, we have worked diligently to foster inter-disciplinary relationships with not only individuals but also with the medical societies. We have recently initiated work with a group of scientific advisors as a first step toward a multi-disciplinary discussion of the state of diagnosis and treatment of specific venous deficiencies. As this program develops, other key stakeholders and luminaries will be included not only from the neurological and endovascular community but also the basic sciences, imaging, anatomy and physiology. You will hear Jack Burks, MD refer to our program during the Roundtable Discussion when you listen to the video recording.
Multiple sclerosis is a difficult disease – it is a multi-factorial disease with multiple components and triggers. CCSVI Alliance recognizes the urgency of a collaborative effort to understand the venous component and we look forward to the challenge and the work ahead of us.
The SIR conference itself, held at the beautiful Moscone Center in downtown San Francisco, was once again an exciting event for CCSVI Alliance to attend as an exhibitor. It offers the opportunity to personally meet and talk with members of the medical and scientific community and other healthcare professionals. It also offers the opportunity to attend scientific sessions and workshops. This year, I chose to expand my horizons to other venous interventions and attended sessions on IR Oncology and a session titled Extreme IR. The innovations in IR Oncology are amazing especially those being practiced in Europe. The treatment of cancer is becoming more tumor specific and the IR’s are leading the way.
Several exciting and promising research results related to CCSVI were reported including two retrospective studies, one from Rush University and one from Albany Medical Center, which evaluated improvement in symptoms. In both studies a majority of patients reported improvements in symptoms, particularly for relapsing remitting MS patients. Dr. Siskin’s team in Albany found that, in general, patients who had been diagnosed within the last 10 years responded better than patients. For more details see
http://www.medscape.com/viewarticle/760923?src=emailthis%3Fsrc%3Dstfb and
link to article
Abstracts submitted which related to CCSVI, including the studies mentioned above, include:
Ø The diagnostic utility of ultrasound for chronic cerebrospinal venous insufficiency (CCSVI) in patients with multiple sclerosis
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Ø Findings on venography in patients with MS undergoing an evaluation for chronic cerebrospinal venous insufficiency (CCSVI): correlation with MS subtype and the presence of visual symptoms at the time of diagnosis
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Ø Optimizing azygous arch venography for CCSVI
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Ø Intravascular ultrasound: key role in diagnosis of azygous arch causes of CCSVI
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Ø High pressure balloon angioplasty to treat internal jugular vein stenoses in patients with CCSVI
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Ø Featured Abstract: Short-term outcomes after endovascular treatment for chronic cerebrospinal venous insufficiency (CCSVI) in patients with multiple sclerosis
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Ø Clinical experience in the management of CCSVI single center experience
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The last abstract was authored by Hector Ferral, MD. I would like to recognize his efforts to establish a retrospective IRB review of the procedures he performed. In order for the treatment of CCSVI to be validated, we need ALL treating doctors reporting their outcomes in peer reviewed journals.
It was an exciting, busy week in San Francisco and it was once again my great pleasure to represent CCSVI Alliance, the patient community, and the “face” of CCSVI in this important medical community and to host an educational forum in the California area.
Sharon Richardson,
President
