Report on the 7/26 CCSVI Symposium

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First and foremost, I'd like to thank everybody who sent get well wishes via the the blog and e-mail during my recent illness. They were all deeply appreciated, and helped keep my spirits up when the going got tough. Since I want to report today on some timely CCSVI news, I'll report fully on my getting sick and subsequent hospital stay later in the week, but for now, suffice it to say that Multiple Sclerosis sucks. Big time.

Before I begin on the main topic of today's post, which is a report on a CCSVI symposium that was held on Monday, I'd like to direct everyone's attention to CCSVI.org (click here), the Internet home of the CCSVI Alliance, a nonprofit advocacy organization dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI). I'm proud to be on the patient advisory board of the CCSVI Alliance, and hope to be very active in helping them in whatever way I can. And now, on to the primary topic of today's post...

A symposium on the "vascular theory of MS" (these days known far and wide as CCSVI) was held Monday 7/26 at SUNY Downstate Hospital in Brooklyn. Organized by Dr. Sal Sclafani, who did my attempted liberation procedure back in March, the symposium was attended by many of the heavy hitters in the world of CCSVI, including Dr. Tariq Sinan of Kuwait, Dr. Ivo Petrov of Bulgaria, Dr. Gary Siskin of Albany, New York, Dr. Fabrizio Salvi of Italy, Dr. David Hubbard of San Diego, California, Dr. Mark Haacke of Detroit, Michigan, and, of course, Dr. Sclafani himself.

Because of my recent health issues, my stamina is a bit low these days, so I missed the morning sessions, which dealt primarily with an overview of CCSVI and some of the imaging techniques used to identify the condition in patients non-invasively. I did attend the afternoon presentations, though, which included talks by Dr. Sinan, Dr. Petrov, and Dr. Siskin. All three physicians have been doing CCSVI procedures by the dozens, and between them account for over 400 "liberation procedures". They each related what they've learned treating patients for CCSVI, including case histories and some of the techniques they developed as their knowledge base and experience has grown.

Rather than give a blow-by-blow account of each presentation, I'll relate some of the general themes that emerged, and the pertinent "take away" points that were made by both the presenting doctors and the physicians in the audience. The one overarching theme that seemed to encompass all that was said is that we are at the very beginning of our understanding of the proper techniques and procedures used to treat the condition known as Chronic Cerebrospinal Venous Insufficiency. There is much more that is not known than is known, and the point was made several times that even for very experienced interventional radiologists, the treatment of CCSVI is a whole new ballgame, requiring brand new skills, techniques, and expertise. The treatment of CCSVI is definitely still a work in progress.

Though all three of the physicians whose presentations I watched agreed that there is strong correlation between MS and CCSVI (which is becoming more and more to seem like a given), there was much polite disagreement over the best methods and techniques used to treat the condition. The physicians differed in their opinions of the size of the balloons used during balloon angioplasty procedures, precisely which areas and degrees of stenosis warranted treatment, and the safety and efficacy of the use of stents.

Dr. Sinan, who is leading the Kuwaiti effort to treat as many of their MS patients with the liberation procedure as possible, has made significant use of balloons much larger than those used by other physicians, and has forgone the use of stents (due in large part to the orders of his government). He did state that aggressive balloon angioplasty procedures largely negated the need for the use of stents, and was quite adamant that treating valves in the lower part of internal jugular veins cleared up most of the problems seen higher up in those same veins. The other two presenting physicians were more open to the use of stents, but only after balloon angioplasty had failed repeatedly to open narrowed areas of the veins in question. The general consensus seemed to be that the use of stents should be considered a last resort, but that their safety and efficacy profiles appeared to be well within acceptable parameters.

One physician in the audience did caution that stents placed in the veins of dialysis patients (who, up until CCSVI came on the scene, were the patient population that most often received venous stents) had a patency rate of only 50% after one year, meaning that half of the stents failed within one year of implantation. Since the treatment of CCSVI is such a new endeavor, not enough time has elapsed to allow us to properly assess the durability of stents placed in the jugular and/or azygos veins. Certainly, it would seem that stents designed specifically for venous use need to be developed.

Dr. Petrov and Dr. Siskin were both more open to directly treating stenosis seen higher up in the jugular veins then was Dr. Sinan, who, as I mentioned before, is of the belief that treating lower stenosis had the effect of clearing up most of the abnormalities found higher up in the jugulars. Dr. Zamboni, the originator of the CCSVI hypothesis, also believes that treating stenosis lower in the veins very often negates the need to address higher stenosis.

All three doctors noted very low complication rates despite their different approaches and techniques, and also noted a fairly wide range in the effectiveness of the procedure from patient to patient. Dr. Siskin made a very strong case for managing the expectations of patients, who, although they may be very educated and logically understand that the CCSVI procedure will not likely "cure" their MS, can't help but hope for a miracle cure, given the insidious nature of Multiple Sclerosis. Dr. Siskin displayed a slide that clearly showed that one third of the patients he treated experienced very significant symptom improvements (most often involving cognitive, heat sensitivity, and balance and coordination issues), one third experienced slight improvement, and another third experienced no improvement whatsoever. The doctors did note that treatment efficacy didn't appear to be dramatically better or worse across the different "flavors" of MS (RRMS, SPMS, PPMS), although one of the doctors (in all honesty, I can't remember which one) did say that he saw some very good results in SPMS patients.

I was struck by how often the interventional radiologists doing the presentations referred to the fact that treating CCSVI was unlike almost anything they had undertaken before, and that there was quite a steep learning curve in "getting it right". Patients need to be wary of doctors jumping on the CCSVI bandwagon without the necessary experience to properly perform the procedures required. Dr. Siskin commented that he thought treating CCSVI would be a relative piece of cake, given his wealth of experience treating blocked arteries, which in reality makes up the bulk of the work that almost every interventional radiologist does. He was very surprised at the challenges presented by treating the veins associated with the central nervous system, and emphatically made this point during his presentation.

In summary, the symposium was a fascinating glimpse into the evolution of a treatment protocol that is in its infancy, and really raised more questions than it answered. The value of the knowledge being passed from physician to physician during the symposium was immeasurable, and I'm sure each left the meeting with far more understanding about CCSVI and its treatment than they had at the beginning of the day.

Unfortunately, although there were neurologists in the audience, the neurologic aspects and implications of the CCSVI hypothesis were not really touched upon; instead the technical aspects of treatment by interventional radiologists was the subject that ruled the day. No surprise, really, since the symposium was organized by an interventional radiologist, and IR's were doing the presentations. Two very good neurologists that work with my neuro were in attendance, and I'm anxious to hear their take on the proceedings. I think it's vital that the interventional radiology and neurology communities come together to fully explore the implications of CCSVI, not only for the betterment of science, but more importantly, for the betterment of patients so desperately in need of effective treatment.

Thanks again for all of the well wishes sent my way during my recent hospitalization and recovery. I'll get into the details of all that happened in my next post, so I'm sure you'll all be waiting with bated breath for my next entry, a tingle with anticipation. Here's a little teaser: my hospital roommate was a homeless man, who, despite his initial distrust and belligerence, and my miserable condition, I managed to become good friends with. We're all in this thing together, folks, and the only way out is through...

PS-Happy 70th birthday to my mom, the original kamikaze…