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Thread: question about syrinx that nobody seems to answer...SCI-Nurse, anyone?

  1. #11
    The good news is that you have a decade+ before you need to really worry about it. Actually that's bad news...but still....

  2. #12
    Quote Originally Posted by quadfather View Post
    The good news is that you have a decade+ before you need to really worry about it. Actually that's bad news...but still....
    He has a decade+ until what?

  3. #13
    Senior Member lynnifer's Avatar
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    Of not much happening like last decade, the decade before and I could have really used some treatments when I was a teenager. lol
    Make America Sane Again. lol

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

  4. #14
    Quote Originally Posted by Jim View Post
    He has a decade+ until what?
    A decade or more before there's anything widely available. For example, here's a thread I started just 13 years ago... it was so close, right?

    http://sci.rutgers.edu/forum/showthr...t=combo+trials

  5. #15
    I thought you meant a decade from now.

  6. #16
    Quote Originally Posted by Jim View Post
    I thought you meant a decade from now.
    I did. It was a decade+ then and it's a decade+ now.

    It took Viagra a decade from the first trial to FDA approval and it had the perfect storm of money, demand and volume. SCI has none of that.

  7. #17
    Wise's treatment will be available via expanded compassionate use later this year. Unfortunately, only for those who can pay.

  8. #18
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    Quote Originally Posted by Jim View Post
    Wise's treatment will be available via expanded compassionate use later this year. Unfortunately, only for those who can pay.
    The trail that will take place in the USA later this year will be free correct?

  9. #19

  10. #20
    Quote Originally Posted by Sparky831 View Post
    Does every SCI individual get syrinx?
    About 30% of people with traumatic SCI have a small syrinx at the point of their injury to the cord. This usually develops within 2-3 years post injury, and for most people, it remains stable after this. For a smaller percentage, the syrinx starts to grow and either ascend and/or descend along the central canal of the cord. A descending syrinx can cause loss of reflexes, changes in spasticity, inappropriate sweating below the level of injury, loss of incomplete preserved sensation or function, and neuropathic pain. In addition, ascending syrinxes can cause loss of sensation and motor function that previously was preserved.

    Most experts in the management of post-traumatic cystic syringomyelia or PTCS (the correct name for this) do not recommend surgery for a stable syrinx that is not increasing in size nor causing progressive loss of function or sensation. The surgery itself can cause further spinal cord damage, even when done by an expert neurosurgeon.

    The two leading centers and physicians for surgical management of PTCS in the USA are at Swedish Hospital/Craig near Denver (Steven Falci, MD) and at the Miami Project/University of Miami (Barth Green, MD). Here is some good information about syrinx management from the Craig website: https://craighospital.org/resources/...-syringomyelia

    (KLD)

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