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Thread: a cure ?when and by who?

  1. #121
    The ASIA exam has been replaced by the ISNCSCI (International Standards for Neurologic Classification of Spinal Cord Injury) which is nearly identical. It is the internationally used assessment for determining level of and completeness (AIS = ASIA Impairment Score, which is part of the ISNCSI) of SCI. Canadian SCI providers have been a member of ASIA for many years, and they are also a member of ISCoS (International Spinal Cord Society), which has embraced and uses the ISNCSCI as well (which is why the name was changed). Any provider who says they are an expert in SCI should be proficient in administration of the ISNCSCI too, and if not, can get free training in its use on the ASIA.org website.

    Prior the development of the ASIA tool (in the early 1980s; with 2 major revisions since) there was the Frankel Grade, which only looked at completeness (not level of injury), which would have been used by such experts from the 1960s on...

    An excellent review of some of this history can be found here:

    http://www.nature.com/sc/journal/v48...c2009198a.html


    (KLD)
    Last edited by SCI-Nurse; 04-05-2017 at 07:15 PM.

  2. #122
    Senior Member lynnifer's Avatar
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    Andrew hot back to me -
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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

  3. #123
    Great he is getting return.

    MRI has nothing to do with ASIA Classification.

  4. #124
    Quote Originally Posted by Jim View Post
    Great he is getting return.

    MRI has nothing to do with ASIA Classification.
    Yup, I smell waste of the large cattle variety.

  5. #125
    Quote Originally Posted by taymas View Post
    Yup, I smell waste of the large cattle variety.
    Thats probably a bit harsh, he isn't claiming to be an expert. There seems to be a lot of discussion on here as to what complete/asia-a/etc means so no wonder someone who isn't a doctor gets it wrong.

    I think the biggest problem with the treatment that he has had is that its not regulated, or part of a scientific trial.

    I've been so tempted to go and get it done there, but am concerned that we don't really know if they are following the best practises (if any exist). It feels like the sensible thing is to get something thats been done in a real trial. The problem is that no one knows how long we will have to wait.

  6. #126
    Quote Originally Posted by SCI-Nurse View Post
    The ASIA exam has been replaced by the ISNCSCI (International Standards for Neurologic Classification of Spinal Cord Injury) which is nearly identical. It is the internationally used assessment for determining level of and completeness (AIS = ASIA Impairment Score, which is part of the ISNCSI) of SCI. Canadian SCI providers have been a member of ASIA for many years, and they are also a member of ISCoS (International Spinal Cord Society), which has embraced and uses the ISNCSCI as well (which is why the name was changed). Any provider who says they are an expert in SCI should be proficient in administration of the ISNCSCI too, and if not, can get free training in its use on the ASIA.org website.

    Prior the development of the ASIA tool (in the early 1980s; with 2 major revisions since) there was the Frankel Grade, which only looked at completeness (not level of injury), which would have been used by such experts from the 1960s on...

    An excellent review of some of this history can be found here:

    http://www.nature.com/sc/journal/v48...c2009198a.html


    (KLD)
    Thanks for the info, and the review article. Being from outside the medical world, I had to gradually piece together all the information I've gotten over the years.

  7. #127
    Quote Originally Posted by niallel View Post
    Thats probably a bit harsh, he isn't claiming to be an expert. There seems to be a lot of discussion on here as to what complete/asia-a/etc means so no wonder someone who isn't a doctor gets it wrong.

    I think the biggest problem with the treatment that he has had is that its not regulated, or part of a scientific trial.

    I've been so tempted to go and get it done there, but am concerned that we don't really know if they are following the best practises (if any exist). It feels like the sensible thing is to get something thats been done in a real trial. The problem is that no one knows how long we will have to wait.

    I did not know ADI Chicago, he was a frequent poster when I was early in my injury. For some reason I remember him having the procedure Dr Lima offered for payment and was outspoken about it giving only increased neuropathic pain. It too was a procedure with no clinical trial. So we have come full circle talking about paying for precedure in a thread started by a fellow member (who has passed away?) that had the worst possible outcome any procedure could have. 🤔
    Be cautious and skeptical. Perhaps this thread can be put to rest and this conversation can be continued elsewhere.
    please . . .test what you already know; and give us what you have. we may not be dying, but we certainly are not living either

  8. #128
    Senior Member lynnifer's Avatar
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    Andrew (Thailand spinal stimulator) states that no sensation has returned whatsoever. He claims the movements are totally stimulator related, despite only 23 months into paralysis.

    When it's off, no movement. When it's on - movement and able to stand.
    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

  9. #129
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    Quote Originally Posted by lynnifer View Post
    Andrew (Thailand spinal stimulator) states that no sensation has returned whatsoever. He claims the movements are totally stimulator related, despite only 23 months into paralysis.

    When it's off, no movement. When it's on - movement and able to stand.
    Andrew's results are in line with Louisville and Mayo. He shows the same, slightly jerky motions. Volitional, but far from graceful. All these folks have done is copy work and sell it outside the regulatory framework at prices only the wealthy can conceive.

    Pretty sure Andrew told me he had some motor, after training, even with the stimulator off though.
    T3 complete since Sept 2015.

  10. #130
    Senior Member Tim C.'s Avatar
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    Quote Originally Posted by lynnifer View Post
    Interesting. Certainly there must be former trial patients who can inform that sensation has returned. Anyone? Bueller? Bueller?

    When I say e-stim, I mean the new stimulation of the spinal cord, not the muscles themselves. I call that FES.
    E-Stim ; Epidural or not, it is therapeutic semantics.
    Please, please don't accept anything that's not Stage3-worthy.
    You of all people here are of the intellectual-leaning type and I'm sure you know this is fugazy BS unless it's doubled-blind study.

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