CCSVI

Last night Bob and I attended a seminar on CCSVI.  That is the liberation treatment for MS that you hear so much about.  Chronic cerebrospinal venous insufficiency.
Here is a little CCSVI 101 for those who are interested:

Italian Dr. Paolo Zamboni has put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain - and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated.Dr. Zamboni's revelations came as part of a very personal mission - to cure his wife as she began a downward spiral after diagnosis. Reading everything he could on the subject, Dr. Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It happened to dovetail with some research he had been doing previously on how a buildup of iron can damage blood vessels in the legs - could it be that a buildup of iron was somehow damaging blood vessels in the brain?
He immediately took to the ultrasound machine to see if the idea had any merit - and made a staggering discovery. More than 90% of people with MS have some sort of malformation or blockage in the veins that drain blood from the brain. Including, as it turned out, his wife.
He formed a hypothesis on how this could lead to MS: iron builds up in the brain, blocking and damaging these crucial blood vessels. As the vessels rupture, they allow both the iron itself, and immune cells from the bloodstream, to cross the blood-brain barrier into the cerebro-spinal fluid. Once the immune cells have direct access to the immune system, they begin to attack the myelin sheathing of the cerebral nerves - Multiple Sclerosis develops.


I thought the seminar, put on by a medical facility from California would be a sales pitch.  It wasnt at all.  He was very thorough in informing about the steps they take to complete the CCSVI as well as the history abnd background of the whole procedure.
The doctor also answered questions from people in the audience and he said time and time again that this is a personal choice each person has to make.  He said he is not offering a cure but the possibility of improving the quality of your life.
I was lucky, another recently diagnosed MS patient asked what I wanted to know.  Is there a benefit to having this done early in your diagnosis before your symptoms get worse.  He could not answer that as there is too early to have studies on the procedure.  He did talk about iron deposits in the brain caused from the veins that are narrowed.  He said many in the medical field feel that low the iron could be the cause of the lesions as the body is trying to fight the iron.  This was a lot to digest and absorb.  I have researching to do yet.
I want to explore this avenue further though, as many of the patients that have lived with MS for years said they wish they could have had the choice years ago that I am faced with right now.  What if this procedure is something that could help me fight this disease?  The risk is very minimal for the actual procedure, but the cost is enormous.  I know many people will say you cannot put a price on your health.  I agree that is true, but making a choice to spend that amount of money doesn't just cost me, it costs my whole family.  How can I make that sacrifice that would ultimately be felt by all of them, and it turns out all for nothing?  But then I imagine just for a moment that this would change the course of my life.  What if this really does make a difference?

I m going to email Dr.Hubbard, who has a clinic in San Diego.  He is a neurologist that has a son that was diagnosed with MS in 2009.  He has dedicated his life's work to finding a cure for MS and extensive study of CCSVI.  I know he is passionate about it because of his son.  Next week I hope to have further answers to these really hard questions.

The hardest part of this seminar was seeing so many people diagnosed with MS in one room.  Some were visibly disabled while others you would never guess suffered from the disease.  There people that had had the procedure that spoke of relief from the symptoms, that talked about taking charge of your health care.  I got to listen to a long list of scary symptoms that I have been fortunate not to have to deal with yet.  Its the yet part that kept me awake last night.  I am a fortunate person in that my symptoms are not a long list nor do they greatly effect my quality of life, but what if that isnt the case in 5 years?

A lot is weighing heavily on my mind.