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Thread: Ccsvi???

  1. #21
    Right, willingtocope, I did not take those points into account.

    Knight's Wife, ongoing best wishes to you and your husband as you research the CCSVI issue and make your decisions.

  2. #22
    Quote Originally Posted by Knight's Wife View Post
    Has anyone here actually undergone it?

    My in-laws won't stop pushing it, despite the fact that we both have said Chris is SOOOOO disabled it couldn't possibly do anything worth the effort and expense for him.

    But I'm still going to, once again, look myself at the current info about it.

    Dr. Young???
    Tell your pushy in-laws that you have investigated CCSVI and have determined that it's not likely to be of value for Chris. Then change the subject.

    I'm so tired of the miracle treatment pushers. I just try to smile, thank them for letting me know about [helminths|peach pits|whatever], and move on.

  3. #23
    Quote Originally Posted by smashms View Post
    that to me does not sound like MS at all, if it was true MS then you would have had a full blown attack by now it sounds like something else but not MS
    That is NOT the case for PPMS...which does not have "attacks" (exacerbations) or remissions like RRMS. His presentation sounds much like my mother's and others I know with PPMS.

    The pseudoexacerbations (which last less than 24 hours) due to overheating are also classic.

    (KLD)

  4. #24
    Quote Originally Posted by SCI-Nurse View Post
    That is NOT the case for PPMS...which does not have "attacks" (exacerbations) or remissions like RRMS. His presentation sounds much like my mother's and others I know with PPMS.
    Yes, PPMS can creep up or gallop, but it doesn't relent. Ever.

  5. #25
    Senior Member willingtocope's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    That is NOT the case for PPMS...which does not have "attacks" (exacerbations) or remissions like RRMS. His presentation sounds much like my mother's and others I know with PPMS.
    Which kind of brings me full circle.

    While there have not been full blown definitive studies that absolutely resolve the issue one way or the other...there is the Vanderbilt Protocol and Dr. Terry Wahl's Protocol (and, CCSVI, for that matter) that have shown, in some cases, the symptoms that are labeled as MS, may indeed turn out to be something else.

    If I can find a doctor who will look beyond the label, maybe I'll find a treatment that will alleviate my symptoms.

  6. #26
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by Knight's Wife View Post
    Has anyone here actually undergone it?

    My in-laws won't stop pushing it, despite the fact that we both have said Chris is SOOOOO disabled it couldn't possibly do anything worth the effort and expense for him.

    But I'm still going to, once again, look myself at the current info about it.

    Dr. Young???
    I think the ultrasound might be a good idea. Not because it could lead to Ccsvi but if he has a lot of blockage in his carotoids than that may be effecting his cognitive skills. If it eases his compulsions or helps his understanding than that might be worthwhile. Otherwise I agree. With what I've read your husband's disease is far enough advanced that he would need regeneration to really help him.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  7. #27
    Hi, I've had CCSVI treatment done two years ago. For me it was a success. What came to mind when I read your post was Annette Funicello's story. There is a documentary that came out recently. She is really really far advanced. 9.5 EDSS. I had no idea it was that bad. Anyway her husband caretaker had been getting up more than once a night to suction her mouth because she couldn't swallow and would choke. After CCSVI he says she doesn't choke anymore and he gets a full night's sleep. It's not a mobility improvement but it's a quality of life and safety improvement. I've had some long-term healing in my mild foot drop since the procedure but the early improvements were all things like vision, fatigue, cognitive fogginess, being able to be outside in the heat, sweating better, bladder issues. For me it was worth it many times over but I know others who tried and got nothing. Good luck and no don't let anyone push you into anything. It's an outpatient procedure but there are still risks.

  8. #28
    Welcome to the community, Sunnywho, and thank you for posting about your experience with the CCSVI procedure - I am very glad that you had such good results!

    Thank you, too, for letting us know about Annette's current situation. I found this page about her CCSVI treatment and her husband's plans to raise money for research. There are several informative videos on the site, including depictions of Annette's life today. I hope that she and her husband will see lasting benefits from CCSVI. Although her doctor is guarded in his comments (based on the length of time Annette has suffered and the severity of her symptoms), if she and her husband can sleep through a night without suctioning, that is a real boon.

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