CCSVI: Part 3
So where do we go from here? Clearly, a great deal of research is needed before the role in evaluating patients for CCSVI (and eventually treating them for it) can be further understood. To deepen our understanding of the issue, the U.S. and Canadian MS Societies awarded seven research awards totaling $2.4 million to study CCSVI. Hopefully these studies will help clarify whether or not CCSVI needs to be discarded, or represents a promising new avenue to the diagnosis and treatment of MS patients.
The stakes in this are quite high for a variety of reasons. If CCVSI is indeed found to be the cause of and cure for MS, this would represent a dramatic change from the current management of the disease. Conversely, if CCSVI is found to play no role, or only a minor role in MS, then many people are exposing themselves to costly diagnostic procedures and risky interventional procedures for no benefit. Thus far, there has been at least one death and one near-fatality from patients who have undergone the Liberation Procedure, to my knowledge. As many of these procedures are being done abroad in a less-regulated setting, there is no clear indication of the exact complication rate (or success rate) of the procedure.
However, none of this stopped some practitioners from performing either the ultrasound procedures to diagnosis CCSVI or the interventional procedures designed to treat it. By simply Googling “CCSVI,” one can find numerous practitioners willing to evaluate MS patients for CCSVI… for a fee, I'm sure. At this time, I think it is inadvisable for any patient to undergo the Liberation Procedure unless they are part of a clinical trial. And I think it is not appropriate for any doctor to offer this procedure unless they are part of a clinical study. And while there is no harm for an MS patient to have their venous system investigated using an ultrasound, my guess is that most patients with MS would have better uses for their money.
Finally, let me say that although I don’t think that CCSVI will ultimately be the miracle treatment for MS hoped for by so many, I do respect Dr. Zamboni and anyone who is willing to challenge conventional wisdom. People who are willing to think differently and risk being wrong often are the same people who make the discoveries needed to move medicine forward. My only hope is that if the research continues to weaken his initial claims, he and others who have invested so much in CCSVI will be willing to reevaluate their position.
I am available via e-mail at firstname.lastname@example.org and will try to answer all questions.