Here is some information that could be provided by MSers to interventional radiologists, vascular surgeons, neurologists and family doctors who are interested in learning more about diagnosing CCSVI. If anyone knows of other or better links, please let me know.
Dr. Haacke's protocol for detecting CCSVI when using MRI/MRV: http://www.ms-mri.com/potential.php.
Dr. Simka's protocol for Doppler Ultrasound is here: Simka Doppler protocol link and a paper describing the same here: http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf
Another site is http://csvi-ms.net which contains the following info (perhaps including links to Zamboni's protocols):
What should I give my neurologist?
Last modified: 13.09.2009 - 08:35 CET
I would like to inform my neurologist about CCSVI. What should I give him or her?
We recommend you give your neurologist the following material:
1. The PDF files of the bold written articles of
should be printed (the PDF links are at the end of the line),
2. the research foundation
should be mentioned since there are all the important articles of Prof. Zamboni listed,
3. and the information of the Bologna conference (08.09.2009)
Press release (Word)
should be printed out.
Optionally, a link to this website http://csvi-ms.net could be added, as there are other important links listed and the site is regularly updated.
And a later addition (though perhaps a duplicate of other information):
http://www.facebook.com/notes/ccsvi-in- ... 5095842210
The MSAA article written by Dr. Jack Burks is a very concise summary of CCSVI plus it is written by a well known and respected neurologist. I have suggested that folks use it, especially when going to their own neurologists.
later said that he should have clarified the "50% relapsed" statement and there are other statements in that article that are so "cautionary" as to be misleading.
With regards to relapses in RRMS patients, 27 percent of these individuals were relapse-free during the year prior to the endovascular procedure. Postoperatively, 50 percent of the individuals with RRMS were relapse-free as of the 18-month follow-up time, which is a significant increase in the number of patients who did not experience a relapse (also referred to as an exacerbation, attack, or flare-up of symptoms).
All of the RRMS patients whose veins remained open were relapse-free following the procedure. However, the numbers are small and the overall annual relapse rate (ARR) for the entire RRMS group was not significantly affected, since this included those RRMS patients who had a restenosis of the IJVs. Nonetheless, this is encouraging preliminary data.
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