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Thread: TM patient gets CCSVI Treatment!

  1. #11
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    Does anyone know anyone who has had the liberation procedure done????

  2. #12
    I do, but I've recently heard from him and am not convinced that he actually had MS. He was turned down for the clinical trial because his symptoms and test results were atypical, so he paid out-of-pocket to have the procedure done privately. He claims to have no symptoms of any kind now, and he believes he was cured. Time will tell.

  3. #13
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    Ugh

    This is so difficult! I've had MS for 14 years and it is just progressively worse it seems like every month! I see my neurologist and his answer is always the same... "you have MS, this is just the way it is". I'm MISERABLE and there is no help, just get use to it. I'm 34 and this is stealing my life! This CCSVI concept makes sense. I'm starting to feel so desperate and so defeated. There has to be something...anything...THIS IS NOT A LIFE! It's mere existence. Ugh! I'm gonna say it... NO FAIR!

  4. #14
    If you can afford it, you could find an interventional radiologist (perhaps through Mayo in Scottsdale) and have the procedure done privately - or you could try to get into a clinical trial.

    The CCSVI concept does make intuitive sense, but you will have to meet specific criteria before anyone will do the procedure outright or accept you into a trial study. There are two options, either a balloon angioplasty or insertion of a stent. The stent carries a small but obviously worrisome risk of death if the stent moves out of place. The man I wrote about (in my post, above) had the balloon angioplasty, which is much safer than the stent, but the results might not last. Balloon angioplasty is preferred by Dr. Zamboni, who first proposed the theory and performed the procedure on his wife (who has MS).

    If you can afford it or can get into a trial, there might not be much to lose by trying - especially if you opt for balloon angioplasty. That's the extent of my knowledge, but you can find more information here.

  5. #15
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    Bonnette

    Thank you so much for the info! You are wonderful!

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