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Friday, August 26, 2011

An MS patient's perspective on CCSVI and questions he has




Stuart,
I heard the radio program the next day [family obligations kept me busy during the show]. I am starting to get a better appreciation for what you do and why

Just to remind you, I am the Red Sox fan who had the CCSVI procedure successfully done and was a little quick to get my point across by calling you directly.  I was actually quite interested in all that Dr. Coetzee had to say.  He was articulate and at some point I would like to see his bio and see exactly the thing he was relating about his PHD and his thinking on new ideas.

I was impressed with his view on CCSVI and clinical trials, however I would really at some point like to address the 4 questions I had asked. I am trying to help bridge the gap that either truly exist or is so strongly perceived that the NMSS is against CCSVI held by most all the patients I come into contact with. Of course it does not help that the headline from the extensive gene study directly slams and denigrates Dr. Zamboni's work. 

The way to get to the bottom line for us ms patients is to combine the studies and come up with some concrete answers for all ms patients. Those of us with SPMS or PPMS are left out in the dark with the other therapies.

The idea of re-mylination is appealing and may be a combination of therapies away from happening. 

CCSVI really works and there is an entire class of Doctors called Interventional Radiologist and other vascular Doctors that will see it through to be mainstreamed with or without the NMSS support. I being a rationale person [even though I am a Red Sox fan ;~) ] would prefer to see it all work smoothly together for the sake of the patients.

Here are the 4 questions I would really like answered to help it all go smoother. 

  • Bill Sullivan ‎1. In light of the CCSVI results we are seeing, when will the NMSS start looking at actual patient trials using Doctors that have experience and success with the procedure.

  •  Bill Sullivan ‎2. Given the fact that many patients have had the CCSVI procedure done, and many more are planning to have it done, does the NMSS feel the needs of patients outweigh the ultra cautious approach you have been using.

  •  Bill Sullivan ‎3. Will the NMSS get behind Dr. Zamboni to further his research and fund a full blown study.

  • Bill Sullivan ‎4. Most importantly, perception becomes reality and right now it is perceived among those who have had the procedure done that there is resistance. [OK maybe # 4 was a little over the top so I revised it]....
  • here is what I edited out~ One of the benefits of having the CCSVI procedure done is that cognitive problems disappear and those that have had the procedure done have increased mental capacity to be aware. We are watching carefully and the internet is recording history. 

Lets hope there will be some concrete answers, solutions and above all progress.
Bill Sullivan
Thank you so much!!!
 
Bill Sullivan




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Disclaimer:  'MS Views and News' (MSVN), does not endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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