Nice job, Marc. Very well-written, concise and on point.
Dr. BB Lee addressed the geographic incidence question at the Bologna conference- he stated that venous malformations occur in Caucasians- who also happen to settle further from the equator. Also, women suffer from venous insufficiency at a higher rate than men. These are known, studied facts in relation to other venous diseases, but have not been written about in CCSVI, since we've only known of this pattern for a year. Dr. Zamboni's team is currently studying EBV and a variety of other external influences (smoking/fats/obesity/Lyme/Cpn) in endothelial disruption and exacerbation of stenosis and reflux. But there are no papers available today. Therein lies the problem, and the flights of fancy in the current speculation. We just don't have the research today (Check back tomorrow for the Liberation Procedure paper.) Dr. Zivadinov stated that he believes there will be thousands of papers studying CCSVI authored in the next ten years. But that's a while off. This may be the first time in medicine that the patients request treatment before the papers are printed...and that's the good and bad thing about the immediacy of the internet.
Jeff saw his closed veins and all those crazy collaterals and made a personal decision to deal with it now. He is glad he did, but each individual needs to understand their own risk/benefit ratio. Just as every MS patient is different, how they approach their disease will be different. And type and location of stenosis will affect this decision, too. It is not the same for everyone, and the treatment approach will need to be tailored to the individual situation. Some will find ballooning sufficient, others will choose to have stents. Some will have no treatment options for awhile-some will wait until there is more research. The individual needs to assess and decide.
Trying to keep it factual on the Facebook page, and correcting erroneous posts over there as much as I can, but it's a full time job I don't want
Appreciate the help keeping it real, Marc. Thanks!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS