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Thread: Ccsvi???

  1. #1
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    Ccsvi???

    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???
    Rebecca
    Wife and Caregiver, husband has Secondary Progressive MS, wheelchair bound, unable to work, MS still progressing.
    Mother of 2 active boys!

  2. #2
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    Anyone???
    Rebecca
    Wife and Caregiver, husband has Secondary Progressive MS, wheelchair bound, unable to work, MS still progressing.
    Mother of 2 active boys!

  3. #3
    Knight's Wife, I didn't respond initially because you asked if anyone here had actually undergone the procedure, and I have not. I know someone who did, though, and he paid a great deal of money out-of-pocket, with negligible results.

    CCSVI was enthusiastically promoted initially, but it remains controversial because followup studies have not shown consistent results. If Chris can become part of a clinical trial, or if you have sufficient funds to pay for the procedure yourselves, you might want to pursue the matter; that's about all anyone can say, at this point.

  4. #4
    Senior Member lynnifer's Avatar
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    There is member of parliament in Canada named Kristy Duncan who is desperately pushing the government for this treatment. There's an active group on Facebook for this. PM me if you want more info.

    From what I have read, the more disabled one is, the less the treatment will work. No answers for this yet ... I hope some doc sees this and chimes in with an educated opinion.

    Doctors in Ontario have been arguing that it is not a routine procedure and therefore not safe ... if it was me, I would do it though as no other treatment currently exists.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  5. #5
    Senior Member lynnifer's Avatar
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    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  6. #6
    Senior Member lynnifer's Avatar
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    It's worthwhile to check and see if the connection between the spinal cord and circulatory system is somehow altered no? ... the azygos vein. If a doctor was offering that to me, I'd jump at it.

    http://www.ms-ccsvi-uk.org/ccsvi-glossary.html
    Last edited by lynnifer; 11-30-2012 at 10:48 PM. Reason: Added web link.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #7
    I have not had CCSVI.

    Most of the folks I am familiar with who have had it have been very minimally disabled, and whatever beneficial effects they perceived from the procedure have worn off fairly soon. I know at least one woman who has had it done 3 times.

  8. #8
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    As I suspected. Nothing is going to fix the damage already done to his spinal cord. I suspect (though it can't be proven by me for sure!) that those who are benefiting have relapsing remitting and therefore whatever disability they were suffering that was relieved may well have gone away anyway (as typical in a flare) and somehow this triggered a relief from the symptoms.
    Rebecca
    Wife and Caregiver, husband has Secondary Progressive MS, wheelchair bound, unable to work, MS still progressing.
    Mother of 2 active boys!

  9. #9
    Senior Member willingtocope's Avatar
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    I'm not a doctor. I've been DX'd with SPMS. Never had a "classic" attack. Symptoms started at around age 62...so...I'm suspicious.

    IMHO, MS is not a disease. Its a label given to a collection of symptoms. There appear to be several different diseases or bodily malfunctions that cause those symptoms. Maybe Lyme disease; maybe claudia pneumonia; maybe CCSVI; maybe glutton intolerance.

    As I understand, CCSVI is fairly easy to "imply" by doing ultrasound on the arteries in your neck. Done that?

  10. #10
    Senior Member willingtocope's Avatar
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    Quote Originally Posted by smashms View Post
    Are you serious? Ms not a disease? Then what is it? Yes there are several things that may cause those symptoms but it is clearly a disease as shown by MRI evidence and such. Just by you saying that tells me that you don't think you are sick.
    Oh no, I'm sick. Spasticity in my legs...shadows on my spine....MS "hug"...the whole nine yards. And the label MS certainly fits.

    I'm just saying that since there appears several different treatments that make the symptoms go away, its possible that there are several different ailments rather than a single disease. You just need to find a doctor willing to explore the possibilities rather than get hung up on the label.

    If a simple ultrsound would rule out CCSVI, I say get it done...

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