Friday, April 16, 2010

Comments on April 14 CCSVI Live Web Forum

CCSVI  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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  1. good, well-measured post, thanks.
    have you read this:

  2. Mark, i hear what you r sayin friend. I for one, after having strong indications of blood flow issues in both my jugs via doppler, going to Bulgaria for tests and treatment. Professor Grozdinski doesn't hesitate to use stents from what i know and to be honest, i am scared. On the other hand, i know that he is not in only for the money (trust me on this one) and he knows veins better than i do. So, here is the question: to stent or not to stent...

  3. Excellent post as always, thank you... :)

  4. Marc,
    Thanks again, as always, for an informative and well-written post. My mom and I were watching on line and were thrilled to hear your question asked, despite it not getting any kind of definitive answer from the panel.

    You are of course right on the mark saying that CCSVI treatment clincs will be opening up on every street corner, with the quality of treatment questionable at best. This makes me furious as I believe that this is happening precisely as a result of mainstream medicine tyring to put the brakes on patients getting tested and treated. All the reputable doctors are now going to be involved in trials, while the not-so-reputable will be treating desparate patients.

    Zamboni had a terrific point that some MS patients should be treated out of compassionate grounds, but I don't think anyone else was listening. Everything I have heard says that balloon agioplasty is an extremely safe procedure. Where is the harm in letting those that want the procedure to unblock their CCSVI, in getting it? Now it will be "buyer beware" until mainstream medicine "allows" the qualified doctors to perform the procedure. And who knows when this will be...


  5. All the snake oil, anecdotal and non-scientific treatment that have come and gone have formed the soil for this grass roots effort. Funny to ponder that most of those anecdotal attempts at a cure dealt with improving blood flow. Perhaps now we can see a connection between the early attempts and our current new hope. If you are going to push this misplaced boulder over a cliff, focus, direction and purpose are essential. If the energy is rushed or misguided, certain failure awaits. As we place our hands, sweat, and energy into moving closer to a cure we must remain focused on the task at hand. As the crowd forms at the base of this stone individually we are useless. However, together as one we can spine the world into space.

  6. I would like to see more emphasis given to what you mention here "Dr. Zavidanov did say that the results were likely skewed by the imperfect imaging techniques used."

  7. Nice summary. I"ll have to have my husband read as my "re-telling" of the forum was less than informational. I liked it when they read your question. I felt like "hey, I know that guy". I am just glad it is getting so much attention so quickly and it seems drs are taking it seriously, at least the reasearch that needs to be done. I definitely wanted more Q & A time and was glad when they extended it. Still so many more questions

  8. Marc:
    I think that's a good synopsis of the web forum on CCSVI. I disagree somewhat about Dr. Common and his contribution to the event.

    I kept hearing him say that collateral veins (if I remembered that term correctly) will assist the venous blood flow when there is obstruction to the jugular veins. He seemed to be saying that it's not much of an issue to have obstruction or stenosis because collaterals take up the slack.

    He may be absolutely right but it felt like he was belittling any concern about stenosis of veins. The body has an amazing way of healing when given the right circumstance, and collaterals are an example of that.

    But I'm an example of someone diagnosed 22 1/2 years ago whose short term memory is quite shot. Sure I've probably developed gorgeous collatorals but they aren't able to assist very well after so many years.

    I hope to be treated when a pilot study starts up (I hope, hope, hope) and may get to see some images of thos lovely collats. Best,


  9. Tx for this update - your usual thorough and commonsense post.

  10. Can you elaborate why they could not open your blockages? Where were your exact blockages and percentage blocked? How do check for restonosis and how often? I had the angioplasty performed locally and feel great. The only test that showed stenosis was the venogram.

  11. Hi!
    I added a link to your blog as your post about CSSVI is well written. I heard your question on the web forum too ! I think people need to be aware that this is not a perfect solution. At least it gives us hope.


  12. Anonymous-thanks for that link. Dr. Rose is certainly entitled to his opinion, although his language is unduly inflammatory. It is important to keep in mind, that despite all of the excitement, the benefits of treating CCSVI have not been proven in a blinded clinical trial. While I believe that CCSVI does play a part in the MS disease process, that doesn't make it so. Only time will tell...

    anonymous-whether or not to go for stents is a very personal decision. Dr. Zamboni, who is currently the world's leading expert on treating CCSVI, having done it much longer than anybody else, is actively advising against using stents. The first use of stents in jugular veins was relatively recent, and since those stents will be in place for the life of the patient, it's impossible to know what their failure rate will be over time. I can totally understand if you decide to go for stents; however, keep in mind that you'll be a medical pioneer, and once those stents go in, they can't come out. I don't know what stage of the disease you're in, but I think that you really need to weigh your own personal risk/reward ratio. If waiting six months or a year is too long for you, then you might want to go for it. If your disease is still relatively benign, you might consider waiting for some hard data to emerge. My disease is in an advanced state, but after much thought and research I decided against stenting, at least for the time being.

    Tea cakes-you're very welcome...

    ann-I also agree with Dr. Zamboni's opinion that the therapy be available to patients on a compassionate use basis. However, I doubt much will be done in this regard.

    David-I think one of the biggest lessons to be learned from the CCSVI saga is the power that patients now have because of the Internet. Whether CCSVI proves to be a success or not, the power of patient advocacy has been demonstrated beyond doubt.

    Anonymous-Dr. Zavidanov acknowledged that the differences between his findings and those of some other CCSVI investigators may be due to the imprecise nature of the noninvasive imaging techniques currently being used to detect CCSVI. MRV's especially have been shown to be prone to artifacting and false positives, and sonography is very dependent on operator expertise. Very often, the findings found during invasive venogram are completely different than those seen in a patient's previous imaging studies.

    Briana-glad my post will be put to good use by you. I too wish that there had been more time for Q&A, as there are an almost infinite amount of questions that still need to be answered regarding CCSVI.

    Patrice-you're correct, Dr. Common did talk about collaterals and how the venous system is very good at circumventing blockages. I probably should have addressed this in the post. This is the very reason why many doctors are so skeptical about the CCSVI theory. CNS venous anatomy has rarely been studied, and there's really no knowledge of what "normal" looks like. I thought that my venogram pictures were rather dramatic, showing my right jugular extremely occluded and surrounded by a web of collaterals. Doctors at the NIH weren't as impressed, telling me that they could show me similar images taken from patients who showed no sign of neurologic dysfunction. As I said in my post, we are at the very beginning of the investigations into CCSVI, and there are volumes still left to be learned.

    WW-thanks for the kind words.

    Neelie-rather than go into a long explanation here, I'll refer you to the post I made detailing my liberation procedure. Please go to:

    taxingwoman-glad you liked my post, and hopefully the rest of my blog. Thanks for linking to it.

  13. Marc, Your summary gives me an objective view of this webconference. I knew I could count on you to cut the 90+ minutes into bite size pieces that I can chew on and digest. Your observations, as always, are articulated in a way that presents the whole story, whether we like the end news or not. thanks.

  14. 10% pay raise, Marc. :) Absolutely tops. My last appointment at the VA with my doc (actually she's a FNP and handles all SCI, not just MS), hadn't even heard of the CCVSI yet. So I had to bring her up to speed on what I knew. Next time, I'm giving her your link/ site.

    As long as that's OK with you...?

  15. Hi All. Any relation to the new/news on statins and CCSVI? How could that help with our vascular health until we have the right diagnostic tool available to confirm CCSVI? Ideas? Kate

  16. Marc,

    Thank you very much for the summary.

    Regarding collaterals, they are a little disturbing aren't they?

    "collateral veins are produced by your body when it thinks it is not getting sufficient circulation from a part of the body. If a part of your body is not returning blood back to the heart from a particular part of the body, your body will grow veins around that area to assisst in circulating the blood. Unfortunately these veins are usually thinner and less organized than the original venous structures. Spider veins are examples of collateral veins. There are collateral arteries as well. When a part of the body is not recieving enough oxygen new arteries will grow around to assisst in circulation. Like veins these are of poor structural quality too. "

    I don't know, collaterals in the veins draining my brain and spine are not a sign of something going bad?

    Ok, ok, more research is needed.

  17. Hello,

    Please could you go and visit The Wheel of Fortuna and leave a supportive message for Steve.

    His partner BobRobert is in the local hospice and is not expected to live much longer.

    It is not so long since his diagnosis which makes it all even more sad.

    Thanks for your support.


  18. Hi,

    his name is Robert Zivadinov :-).

    Have a nice day,


  19. Andershon............
    CNS venous anatomy has rarely been studied, and there's really no knowledge of what "normal" looks like.

  20. It is almost 12 month after first group of brave MS patients had liberation done-how are they doing , how mny had to repeat procedure ? How are the symptoms?

  21. Great post as always. I have a question about what you said regarding your diagnosis. Ive been struggling with symptoms for 10+ yrs with the frequency and intensity of episodes accelerating lately. I was diagnoseed in Nov with RRMS at St Vs after a bout of optic neuritis and started Rebif. It doesnt seem to be helping. I went to Mt Sinai to see what other tx options there were and just got undiagnosed instead. Normally good news but I still feel like ass on a regular basis. Anyway other than venting I'd like to ask you about any treatments you may have tried and what you think about your neurologist. Check this out..

  22. It is also important to assess whether or not the person using the wheelchair wants to be able to maneuver it on his own. For those who don't have much hand or arm strength, a transport wheelchair may be sufficient. Transport wheelchairs have small back wheels, as opposed to the standard ones that are designed to pushed by the person in the wheelchair.