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Buffalo CCSVI Study: Hints of Big News Coming Soon

Posted Feb 06 2010 4:42pm

Annotated Sagittal ATECO MR Venogram Image by Reigh LeBlanc via Flickr

As many of you who have been following the CCSVI saga are aware, the University at Buffalo has been conducting an imaging trial to study whether or not there is correlation between Multiple Sclerosis and the vascular abnormalities described in the CCSVI theory. For those who are unaware of CCSVI, you can click for more info here .

The center conducting the study, the Buffalo Neuroimaging Analysis Center (BNAC) has just released a newsletter ( click here for newsletter ) that, without stating the actual study results, gives strong indications that those results will be extremely positive. To quote the newsletter:

"What I can tell you today is that the preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues, the worldwide press, and individuals like you who are following very closely any developments about CCSVI. We are planning a press release by mid-February, as well as submission of these findings to the American Academy of Neurology annual conference as late breaking news"

As a result of these findings, to BNAC has undertaken the following initiatives:

  • A second phase of the study, which will include 500 patients to be imaged using a special Doppler machine developed specifically for CCSVI ( click here for more info ).
  • The center will offer, for a patient paid fee, comprehensive CCSVI venous diagnostic testing. Testing will be offered to price levels, a CORE package for $4500, and an ADVANCED package for $6000. The center is also undertaking negotiations with insurance companies to try to get them to cover the cost of this testing, but doesn't expect any company to cover such testing for at least 18 months. ( click here for more info ).
  • A 30 patient, six-month study that will determine the safety and efficacy of therapeutic angioplasty ( click here for more info ).
  • A future double blinded study of a brand-new therapeutic procedure, which differs from that used by either Dr. Zamboni or Dr. Dake at Stanford University.

Certainly, these initiatives would not be undertaken if the soon-to-be released trial results were disappointing. The results are scheduled to be released sometime in mid-February.

As I have stated before, I'm cautiously skeptical but very optimistic that CCSVI will prove to be a major advance in our understanding of the mystery we now call Multiple Sclerosis. I'm not sure that it will explain all cases of MS, but I do believe that exploring the idea of a vascular component to MS has the very real potential to fundamentally change our basic perceptions of the disease.

That said, it's important to keep in mind that the Buffalo study, no matter how positive the results, will only show correlation between vascular abnormalities and Multiple Sclerosis. It will not address the question of whether these vascular abnormalities are the cause or the effect of the MS disease process. While there is evidence to suggest that the blood flow abnormalities seen in CCSVI may in fact be the genesis of the disease, it is also still very possible that the mechanisms that damage nerve and brain tissue in MS also cause the vascular anomalies now being called CCSVI. Only time, and more research, will tell. Of course, many of us (myself included) do not have the luxury of time, and each patient will need to make their own judgments as to how to proceed, armed with whatever new knowledge the study results provide.

These are very exciting times in the world of MS research. It will be extremely interesting to watch the reaction of the US media and mainstream neurology to these findings. If the results are as positive as the above hints suggest, it will be difficult for the US media to continue to entirely ignore the CCSVI issue, and the reaction from the neurologic establishment will likely range from a welcome open-mindedness to cries of absolute "balderdash", depending on the ilk of individual physicians. I predict that we will hear criticism over the fact that many of the Buffalo study principles have in the past had close associations with Dr. Zamboni, a charge that will be rendered impotent as long as the study has been conducted in the proper blinded fashion, which I believe it has.

The excitement in the MS patient population will without question be off the charts, which is testament not only to the promise of CCSVI, but also to the frustrations many MS patients feel with the current state of MS care and treatment.

Buckle up, folks, the ride is about to get very interesting...

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