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CCSVI: The Story So Far

Posted Sep 08 2010 10:14am

When stories about Dr. Paolo Zamboni’s new treatment for MS hit the Internet I, like everyone with MS, breathlessly read the news and watched the videos about CCSVI (chronic cerebrospinal insufficiency).  CCSVI exploded onto the MS scene and grabbed the imagination of MS patients in a way that hasn’t been seen before.  No wonder.  The theory is extremely attractive because if true, the “fix” for the most common forms of MS would be a common outpatient surgical procedure.

And Dr. Zamboni has cred : he is a surgeon and Director of the Vascular Diseases Center at the University of Ferrara in Italy, and has authored two books and more than 300 professional articles.

In today’s blog I give an overview of the issues surrounding CCSVI.  It’s a subject rooted in science, but for us MS-ers it’s also a highly emotional subject.  Of course.  It’s just important that we keep clear heads about it, and I’m hoping that this summary will provide a helpful perspective on the subject.  As always, space limitations prevent me from including all but the highlights, but I have to say this: Please don’t shoot the messenger!

So what is CCSVI?  Simply put, it’s a narrowing or blockage of certain veins and arteries leading from the brain to the heart (jugular vein) and spinal cord (azygos vein).  According to Dr. Zamboni, the slowing of blood flow at these bottlenecks result in a backing up (reflux) or leaking of red blood cells into the brain and spinal cord.  This in turn causes an excess of iron deposits in those locations, and related inflammation of the blood-brain barrier. 

The treatment is the “liberation procedure.”   First, the presence of the narrowing is confirmed by noninvasive ultrasound.  Then a balloon angioplasty is performed—a tube is threaded through a vein in the thigh and widens the narrowing with a balloon, which is then removed.  In some patients a stent may be placed in the vein to keep it open.

I reviewed the abstracts of two of Dr. Zamboni’s most cited studies. The first , published in December 2008, found that almost all of 65 patients with MS had “venous outflow anomalies.”  RRMS and secondary progressive patients had different patterns of anomalies than did primary progressive patients.

The second reported that performing angioplasty on, again, 65 patients, resulted in a “minor and negligible complication rate.”  The improved blood flow resulted in fewer relapses and lesions.  In RRMS and primary progressive patients there was a “significant” improvement in physical quality of life, with a “positive trend” in secondary progressives.  Rates at which narrowing reoccurred suggested a need for improved techniques in certain types of patients.  The study concluded that another control study was warranted.

What hope this gives to all of us with MS!

A layperson—at least this layperson—has to believe that it is enormously significant that virtually all of the research subjects with MS also had CCSVI.  This is especially true when combined with the fact that none of the non-MS subjects had narrowing or blockage.  And the results of Dr. Zamboni’s studies are extremely encouraging, to say the least, in some cases.

But hold the phone.

Even if we all have CCSVI, how successful is the treatment, and how risky?  And for some of us, is any potential benefit worth even the ultimate risk?  Tedious questions all, but they have to be asked.

The fact is that patients who have traveled overseas for the procedure have had widely differing results.

The risks are far from hypothetical.  Earlier this year, Stanford University stopped treating CCSVI after one patient suffered a brain hemorrhage and died, and another had open heart surgery after a jugular stent migrated to the heart.  It’s worth noting that both of these procedures involved stents, and one patient didn’t have MS.  And Stanford is proceeding with grant applications for a CCSVI clinical trial.

What about the fact that some the effects of balloon angioplasties can wear off with time, and stents can collapse or migrate?  If you knew you’d have to undergo repeated angioplasties or stent implants, both procedures (the stent in particular) with defined risks that can’t be performed an endless number of times, and that you might end up right back where you started, would you still do it?

These are not minor details; they are life-and-death issues.

A recent study conducted at Humboldt University in Germany found CCSVI in only one of 56 MS patients studied.  So what? you may ask.  If my veins are blocked, I’m willing to take any risks involved.

As angry and frustrated as questions may make MS patients, they are ignored at our peril.  In April 2010, at a forum held by the National MS Society and the American Academy of Neurology,  Dr. Zamboni himself stated, “This is a work in progress,” and noted that his group is planning a controlled clinical trial.  A recording of the entire forum can be seen here .

The medical profession is sitting up and taking notice, as it should.  The University at Buffalo, the State University of New York, has taken a lead in moving the research along in the U.S.   Dr. Robert Zivadinov and his team at Buffalo, in collaboration with Dr. Zamboni, studied 16 MS patients, all of whom were found to have CCSVI.  Another team at Buffalo is now studying whether balloon angioplasty improves MS symptoms or progression.  Dr. Zivadinov has stated, “If we can prove our hypothesis that cerebrospinal venous insufficiency is the underlying cause of MS, it’s going to change the face of how we understand MS.”  Extremely exciting.  Significantly, though, he also stated that media coverage of CCSVI has been “unrealistic.”

What all this means is that the results of Dr. Zamboni’s studies are fascinating—so fascinating that clinical trials are or soon will be in play around the U.S. and Canada.  Let’s hope that their results come in quickly as well.  There is no time to waste.

In the meantime, check out Nadine LeGier’s journey with CCSVI on YouTube .  It will be fascinating to see if her improvement continues.  Many, many other videos of MS-ers who have taken the plunge are available on YouTube.  Their stories are compelling, and run the gamut from not much of a difference if any, to considerable improvement, at least in the short run.

What does this mean for us individually?  Just personal empowerment and the possibility of a revolution in the treatment of MS!  Personally, I plan to wait until we know a lot more.  But that’s easy for me to say now, as I’m doing relatively well (knock wood).  Who can fault anyone who is deteriorating quickly, or is already severely disabled, for trying anything that might help?  The important thing would be for that person to go in fully informed. Some MS patients say they don’t care about the risks, or would rather die than continue as they are.  If you are one of those, I can only hope that you can hold on long enough to do this when safety and effectiveness are more clearly achieved.  If you can’t, we all are rooting for you and are anxious to hear about your experience.

And what does this mean for the work of the Myelin Repair Foundation?  The MRF welcomes new discoveries wherever they come from—of course!  The goal we all share is to end this pernicious disease.  Whatever the cause of MS, even CCSVI, the disease process involves the destruction of myelin, and that myelin needs to be repaired.  So, thank goodness, the vital work of the MRF continues.

Additional sources for this blog and for more information:  “What Causes CCSVI” by Julie Stachowiak, Ph.D.; “CCSVI—A Huge Breakthrough in MS” by Ashton Embry, Ph.D. for New Pathways Magazine; “ University at Buffalo Launches Clinical Trial of New Multiple Sclerosis Treatment “.

*The opinions expressed herein are not necessarily those of the Myelin Repair Foundation or of its employees, principal investigators or advisors.

What do you think about CCSVI?  Are you planning to sign up for clinical trials?  Would you travel overseas for the liberation procedure?  Have you had the procedure?  If so, what is your experience?


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