Comments on April 14 CCSVI Live Web Forum

On Wednesday, April 14, a forum on the topic of CCSVI (Cerebrospinal Venous Insufficiency) was webcast live from the American Academy of Neurology conference in Toronto. To view a replay of the webcast, click here. The program ran approximately 110 minutes, and surely could have gone much longer if time allowed. Although much information was covered, the topic of CCSVI has generated so much interest, and has such great potential to hugely impact the entire MS community, that I was left wanting more. For patients relatively unfamiliar with the topic of CCSVI, the forum served as a very good introduction, but for those of us who have been following the story in detail, some of the more pressing questions were left unaddressed. The event was sponsored by the National Multiple Sclerosis Society, who have posted good summary of the event on their website (click here for summary).

The forum panel included Dr. Paolo Zamboni, the father of the CCSVI theory; Dr. Robert Zivadanov, who is heading up the CCSVI studies at the University at Buffalo; Dr. Andrew Common, an interventional radiologist from the University of Toronto; and Dr. Aaron Miller, who heads up the Mount Sinai Hospital MS Center in New York.

The doctors each took their turns giving their own presentations, and then fielded questions from both the live audience and folks watching on the Internet. Rather than give a blow-by-blow account of the forum, I'll summarize the general gist of what was said, and then chime in with my own opinions.

Although, for the most part, the forum was not contentious, it was clear that CCSVI remains a controversial topic, and that much of the neurologic community remains dubious, at best. Dr. Zamboni and Dr. Zivadanov both presented compelling evidence in favor of the CCSVI, but both stressed the necessity of further scientifically sound trials, and urged patients not to undergo the "Liberation Procedure" outside of official study protocols. In other words, they did their best to discourage patients from becoming CCSVI tourists, traveling to distant lands in search of treatment.

Both doctors stressed that the research must be carried out with patient safety at the forefront, and discouraged the use of stents until more is learned about their efficacy and safety when used in the jugular and azygos veins. Dr. Zamboni even went so far as to say that in many cases he'd recommend traditional "open neck" surgery before resorting to stents.

The forum also made it abundantly clear that the noninvasive imaging techniques currently being used to detect CCSVI in MS patients leave much to be desired. Although Doppler sonography yields more accurate results than MRV imaging, the accuracy of the test is very much dependent on the expertise of the individual sonographer. The gold standard of CCSVI detection is the traditional catheter venogram, which involves threading a catheter through the patient’s vascular system and into the jugular and azygous veins. This method also has the advantage that an intervention can be done (such as balloon angioplasty) during the procedure.

Dr. Miller, a noted neurologist, seemed skeptical of the theory but at least open-minded, calling the early results "surprising and intriguing ". He did stress the efficacy of the currently available MS treatments, and that new, more effective treatments are on the horizon. Of course, all of these treatments are either immunomodulating or immunosuppressive, and do nothing to address the still undiscovered cause (or causes) of Multiple Sclerosis. I've previously voiced my opinion that these therapies treat a symptom of the illness rather than the disease itself, so I won't expound on that here. Dr. Miller agreed that CCSVI certainly deserves further study, but didn't seem to be bursting with enthusiasm.

Dr. Common, the interventional radiologist, talked about the relative safety of the balloon angioplasty procedure, though he had never done a "Liberation Procedure" himself. Like the other doctors, he urged that patients not rush to have the treatment done by just any physician willing to do it, as successfully opening up venous blockages takes considerable skill and experience.

He also talked about the fact that the venous system is very adaptable, and that the actual anatomy of the CNS venous system can differ greatly from patient to patient. When blockages occur, such as are seen in CCSVI, a system of "collateral veins" develops in the body's attempt to compensate for the blockage. These collaterals are commonly seen in the venogram's of CCSVI patients, and according to the CCSVI theory are inadequate in their ability to handle the blood flow needs of the patient. However, this opinion has been disputed. In actuality the CNS venous system has been little studied, and there's no general consensus on what "normal" looks like.

Dr. Zamboni and Dr. Zivadanov both speak in heavily accented English (especially so for Zamboni), making some of what they said difficult to understand. It would be great if a written transcript of the event were posted by the NMSS.

Dr. Zamboni expressed his feelings that although he agreed that patients only undergo intervention in clinical trial settings, patients experiencing very aggressive disease should be allowed to undergo the Liberation Procedure on a compassionate basis. I certainly second that emotion.

I found the forum to be extremely interesting, though very little new information on CCSVI was disclosed. Dr. Zivadanov did present a more detailed breakdown of the 500 patient imaging study results that were first released in February (click here for a report on those results), but the information that was provided was difficult to understand in the relatively short amount of time allocated to present it. I'm looking forward to reading more on this, although Dr. Zivadanov did say that the results were likely skewed by the imperfect imaging techniques used.

Having undergone an unsuccessful Liberation Procedure myself (in that blockages were found but were unable to be opened), I do agree that patients should be very wary of spending large sums of money to travel to distant lands for "liberation". I understand the desperation that many patients feel that leads them to go on such pursuits, but the current procedures used clearly need refinement, and new devices (such as stents specifically designed for use in veins) need to be developed. The study of CCSVI is still in its infancy, and even if CCSVI proves to be THE primary cause of multiple sclerosis, there is still a tremendous amount to be learned about the exact impact of CNS venous insufficiency, and how to best remedy it.

An unfortunate example of the reasons to not seek long-distance liberation is the very next patient who underwent the procedure in the same facility that I did, who traveled to New York from Europe for treatment. Although the procedure was initially successful, a few days after the patient arrived back home in Europe, her veins restenosed, and that patient is currently seeking treatment closer to home, having spent many thousands of dollars and endured the rigors of international travel for very little benefit.

Dr. Zamboni found that 50% of the patients he performed interventions on experienced restenosis within a year, and required further intervention. Because of the uncertain outcome of these procedures, I believe it's very important that patients be treated locally, as even after successful treatment, patients require close follow-up, especially in the weeks directly after undergoing liberation.

Restenosis rates are lower when stents are used (although not entirely eliminated), but the stents currently available were all designed for use in coronary arteries, whose anatomy differs tremendously from that of veins. The risks involved with their use include stent migration (which would inevitably lead to the stents being flushed directly into the heart), and stent fracture and failure due to the stresses imposed on them over years of undergoing the bending, twisting, and torque they would experience when implanted in jugular veins.

After doing much research, during which I found opinions ranging from "the stents are virtually indestructible" to "the stents are guaranteed to fail within 10 years", my personal choice was to forgo the use of stents for now, even though stenting would have likely opened up my blocked jugular, and wait for more refined devices to be developed. As I wrestling with this decision, the point became moot, as the doctor who performed my procedure has temporarily ceased doing liberations, in preparation for a pilot study to be started sometime early this summer.

I share the frustrations of the hundreds of thousands of MS patients chomping at the bit wanting an immediate fix, but often discretion is the better part of valor. The CCSVI theory is straightforward enough that its validity should be able to be proven one way or the other rather quickly, and if it does indeed prove valid, procedures will be developed to safely and effectively combat it. It appears that upcoming trials will all use balloon angioplasty, and not stents, to investigate the efficacy of opening up the blocked veins of MS patients, due to safety concerns.

As do many reading this, I hear the MS clock ticking louder and more menacingly with each passing day, as my disease and disability progress. It's almost impossible to take a truly objective view of the unfolding CCSVI saga when your life is riding on its outcome, but it's vital to not let desperation rule the day, and thus open yourself up to those who would take advantage of the desperate by providing unproven and possibly dangerous services at very high prices. Expect to see more and more of these types crawling out of the woodwork, as the medical techniques used are relatively common, but the expertise needed to pull off a successful intervention is not.

Naturally, I wish that my Liberation Procedure had been successful, and the fact that it wasn't feels like a kick in the groin, but I hope at the very least my experiences might serve as a cautionary tale for fellow patients who feel compelled to take desperate measures. To paraphrase Winston Churchill, when it comes to the study and understanding of CCSVI, and its place in the treatment of MS, we are not at the end, or even at the beginning of the end, but we are perhaps at the end of the beginning.

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