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

  1. #21
    Senior Member lunasicc42's Avatar
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    thanks SCI-Nurse
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  2. #22
    https://goo.gl/photos/wD7JsnzCczx3Ao9k9

    I had one from my injury up to my cervical and if it was not from a injury I would not have known it was there. Neurosurgeon did the operation and drain it as well have a shunt. Minimum effect and the doc it's highly recommended. He was amaze of how well the surgery went. Actually excited..
    Last edited by papito1; 06-13-2017 at 10:40 PM.
    life begins when you walk in spirit papito189@gmail.com

  3. #23
    Quote Originally Posted by SCI-Nurse View Post
    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)
    Thank you for this helpful information. I really appreciate it. I really wasn't aware of syrinx.

  4. #24
    Hi, I have a syrinx in my c spine. I've had it drained and I hade my cord untethered @ the same time in 2015. I live in NJ and got surgery @ umdnj Newark thank God. If I can be of any assistance please ask?

  5. #25
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by catlikekg View Post
    Hi, I have a syrinx in my c spine. I've had it drained and I hade my cord untethered @ the same time in 2015. I live in NJ and got surgery @ umdnj Newark thank God. If I can be of any assistance please ask?
    Can I please have the name or any to contact the surgeon just to talk to him
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  6. #26
    Dr. Heary's partner performed Ken's procedure. Dr. Heary is one of the surgeons in the US clinical trial-

    http://www.rutgershealth.org/faculty...Robert_F_Heary

  7. #27
    Yes Dr. Ira Goldstein from umdnj Newark NJ. I can give you their # in a message or you can Google it. Lmy if you have any other questions no worries. I'm Ken btw.

  8. #28
    Quote Originally Posted by lunasicc42 View Post
    Can I please have the name or any to contact the surgeon just to talk to him
    lunasicc42 please let me know what you hear.
    "I'm manic as hell-
    But I'm goin' strong-
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  9. #29
    Senior Member lunasicc42's Avatar
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    I am having trouble deciding if I want to get this surgery soon and separate or sort of like a package deal if I decide to participate in Scinetusa
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  10. #30
    Senior Member lunasicc42's Avatar
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    I can't talk or use a phone ...does anyone know how to contact him
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

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