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Thread: Trigeminal Neuralgia....?

  1. #1
    Join Date
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    Trigeminal Neuralgia....?

    My lovely wife is now having a big problem with >> Trigeminal Neuralgia <<

    The drugs the doctors give her for the bad pain only partially work, they knock her out for anywhere from 4 to 6 hours, and they give her nasty side effects like a bad rash. The surgical options seem to sound as bad as the pain, and most are NOT covered by our "National Health Care" which would cost us maybe $6000 or more and could possibly not work, or if it does come back in two years

    One thing I have found online that looks promising, is a product called >> "Painshield" << it looks fairly new to the market so there is not a lot of info out there....?

    I'm wondering if anyone has something they can offer up about this problem, this is something that we cannot just live with.

    Thanks!
    The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.
    William Arthur Ward

  2. #2
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    Stuart, I know a couple of people that have it, but whose symptoms are reasonably controlled by meds. Based on what I know, I would suggest that she be seen by a good neurologist--if she hasn't seen one already. If she has I'd suggest a 2nd opinion. I don't know if that's possible in Japan. It's easy in the US, but frowned on here in Canada. If it was at all possible I'd suggest going to a center that specializes in it. I know of one at Johns Hopkins, but I'm sure there are others in other places.....FWIW.
    Last edited by Cynthia White; 02-20-2011 at 04:56 AM. Reason: grammar
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  3. #3
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    Sorry to hear about this, Stu. It must feel like a run of bad luck for the two of you. Doing some research now. Hang in there!

    Thanks,

    Bill

  4. #4
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    Stu,

    You've likely found it already, but this just launched: http://www.fpa-support.org/2011/02/f...february-2011/

    Looks like it's an updated version of this: http://www.fpa-support.org/2011/02/t...e-community-2/

    They've got 3,500 members, so it may be the best place to do research. I have a feeling just reading the forums may give you a wealth of information quickly...

    Thanks,

    Bill

  5. #5
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    Tokyo Japan
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    Thanks Bill, I'd not found that, you saved me some time!

    Cynthia, she is seeing a neurologist, but I too think she should get a second opinion, and am pushing her to do so. One thing that she is doing is going to acupuncture, a doctor that specializes in nerve problems, it was them that correctly diagnosed the problem as TN, not the regular hospital

    Thanks everyone!
    The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.
    William Arthur Ward

  6. #6
    Join Date
    Nov 2010
    Location
    Tokyo, Japan
    Posts
    121

    trigeminal neuralgia

    Hi Stu,

    You might want to check out http://www.savella.com/ This product is for a similar syndrome. I do not think it is approved in Japan but it is approved in the US. I agree with Cynthia. Johns Hopkins is leading edge. You might be able to contact their Pain Clinic.

  7. #7
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    The fun never ends(?). I have no experience to offer but, will hold you and yours in my thoughts. Give your family me best.
    Any sufficiently advanced technology is indistinguishable from magic.
    - Arthur C. Clarke

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