I keep hearing questions about Dr. Zamboni and CCSVI. My kingdom and the horse to anyone who can tell me what CCSVI stands for. Not you, Christopher. MS patients periodically buy into new and unproved ideas for therapies. An open mind is a good thing. Lord knows the status quo sucks. But we need to take a hard look before we leap into the abyss.
Here is what the NMSS writes about the procedure. “Some studies have indicated that CCSVI, a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis was put forth by Dr. Paolo Zamboni from the University of Ferrara in Italy in 2009, and is now being pursued by other investigators as well.” Very useful.
I asked questions about CCSVI some years back and even had an interventional radiologist offer to do the procedure. My research suggested that veins opened by inflating balloons tend to close again, sometimes in short order. Some physicians use stents to keep the blood vessels open. A few patients at Stanford died from the procedure. No, thanks.
I would not go near CCSVI. Others would. Don’t ever tell a Canadian you are opposed to CCSVI. The procedure is covered by their healthcare plan and is popular. I have spoken critically of CCSVI and almost gotten lynched by Canadians in the audience.
Every MS patient can decide for himself or herself. Remember when it was all the rage to have amalgam fillings removed from our teeth? Some dentists cleaned up before they lost their licenses. I hate to see fellow MSniks falling prey to fads. That speaks volumes about the desperation so many of us feel.
I am heartened that Dr. Sadiq’s stem cell clinical trial at the Tisch MS Research Center in New York is moving to a Phase Two trial. That is a better bet as far as I can tell. Slow and steady wins the race. I possess no greater patience than any of you nor any more wisdom. Just make certain the ice is solid before you venture out on it.