Thursday, April 8, 2010

Information on CCSVI Liberation Treatment

I learn something new each day! Liberation Treatment is what they are calling the procedure that Dr. Zamboni has pioneered to treat MS patients who are also diagnosed with CCSVI. And, here is a link to a website that has names of surgeons that are performing it! It was just a couple days ago that I applied for the BNAC study and decided to track down surgeons that could perform this procedure. Now I know what the name of it is. It is Liberation Treatment! Also, when you go to that website, you will see they have information on a clinical trial in Albany, NY. I am signing up for that, too!

Tuesday, April 6, 2010

National MS Society - Encouragement or Discouragement?

What kind of support are we people with physician-diagnosed MS and possible undiagnosed CCSVI getting from the National MS Society? I have a personal experience. I recently went to the National MS Society website to view their FAQs regarding CCSVI (link here). I encourage you to go there and read it to get your own take on the subject. What I got from it was the NMSS doesn't deny that there may be something to recent news and developments regarding CCSVI, but they sure don't come close to endorsing it. They say they are openly looking to provide grants for research, but they don't disclose how much. There is a lot they don't tell us, but it is clear that they do tell us to not jump on the bandwagon. I'm sorry, but I can't do that. One of the positives from the NMSS was a link to the Buffalo Neuroimaging Analysis Center (link here) where they are starting a Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation study. I have submitted my application for this study and await their further communication to see if I will be accepted. You should check that link out, also.

The NMSS calls Dr. Zamboni's procedure for clearing vascular blockages "experimental endovascular surgery." Stories have been spread, reportedly from the NMSS, that MS/CCSVI patients should not travel to Poland or other countries to undergo Dr. Zamboni's procedure for CCSVI because Poland is a third world country, or because many people have died as a result of undergoing this procedure. There are varying degrees of responses to this. Here is a story by Ginger, an MS Blogger who went to Poland to have the CCSVI procedure. I encourage you to read it. But, please, read Ginger's entire blog. She is spitting mad at all the MS Societies.Her blog goes more fully into some of the events she has experienced that relate to the Canadian MS Society. But really, all the MS Societies are related, as you will see when you go to the NMSS website and read how they are all pooling their thoughts on how to deal with CCSVI.

My recent experience? I just want to get the names of some surgeons in the Houston, TX area who may be skilled or have an interest in the CCSVI procedure. I am not looking for a recommendation and I clearly stated that in my correspondence. The NMSS replied that they would not give me any names of surgeons and suggested that I contact my neurologist to discuss that subject. I suppose I will do that. I just thought the NMSS would be more proactive and supportive. My bad.

So, long story short...I have been talking about CCSVI and wondering aloud on my blog what I should do, writing about it and wondering what others are doing. I am now doing. I hope to get in on the Buffalo experience. Next, I want to find a vascular surgeon in Houston, TX who is on the leading edge of this thing. I wonder what the NMSS would say about that...