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

  1. #1
    Senior Member lunasicc42's Avatar
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    question about syrinx that nobody seems to answer...SCI-Nurse, anyone?

    I have a very high syrinx and noone is willing to go in and untether it, it's shunted. But in order to undergo any regenerative treatment won't I have to have the syrinx untethered first? Doesn't chinascinet do untethering as well? I thought I remember it being said that chinascinet has some of the most skilled Spinal surgeons in the world, does Jim or scinurse have any input or suggestions? because it is my understanding that before I even think of undergoing any regenerative treatment I have to get the syrinx dealt with surgically? Am I correct in my thinking?
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  3. #3
    Quote Originally Posted by lunasicc42 View Post
    I have a very high syrinx and noone is willing to go in and untether it, it's shunted. But in order to undergo any regenerative treatment won't I have to have the syrinx untethered first? Doesn't chinascinet do untethering as well? I thought I remember it being said that chinascinet has some of the most skilled Spinal surgeons in the world, does Jim or scinurse have any input or suggestions? because it is my understanding that before I even think of undergoing any regenerative treatment I have to get the syrinx dealt with surgically? Am I correct in my thinking?
    lunasicc42, I'm in same boat as you. I'm c4-c5 with syrinx and I haven't met a Dr in my area that's willing or knows how to untether a syrinx. Everything i've read is that Dr Youngs treatment includes untethering. I'm sure I read that Dr's in the chinascinet trials were questioning if untethering by itself wasn't even more responsible for patients improvements.
    "I'm manic as hell-
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    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by ineedmyelin View Post
    lunasicc42, I'm in same boat as you. I'm c4-c5 with syrinx and I haven't met a Dr in my area that's willing or knows how to untether a syrinx. Everything i've read is that Dr Youngs treatment includes untethering. I'm sure I read that Dr's in the chinascinet trials were questioning if untethering by itself wasn't even more responsible for patients improvements.
    The thing is that there is frankly there is not enough published data available YET for me to participate in umbilical cord blood treatment but the untethering aspect of it intrigues me so far since no one else will currently do it so I am stuck until I get that taken care of. I am wondering if anyone can recommend a specialist; even out of county because as far as I know: my Spinal cord would require untethering before I can undergo a regenerative treatment right? I mean it has to be done but who is going to do it?
    "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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  5. #5
    I spent two years at the Kunming Tongren Hospital (2012-2014) with my son who was doing the walking training there. (The neurologist Dr Zhu and neurosurgeon Dr Liu who worked (and still work) with Dr Young on the UCMBC clinical trials had moved to that hospital after retiring from the army.) During the time we were there, there were several chronically injured patients, including three non-Chinese, who had untethering surgery / removal of syrinx. I am still in contact with all three, and will ask them to look at this question and give their opinion if possible. I don't believe any of them recovered function after the surgery, but the benefit of having adhesions/cysts/syrinxes removed can also be measured in terms of the further deterioration that does not occur. My son considered the surgery but decided in the end not to go ahead, as he was not aware of any deterioration in motor or sensory function and he did not want to take the risk of acquiring neuropathic pain (I believe this risk has been discussed by Dr Scott Falci who does this surgery in the U.S.). I do remember one young man who had decompression surgery at the hospital days after suffering a thoracic injury. He made a very good recovery, walking with crutches within a few months. He was still at the hospital when I left, so I don't know what the final outcome was. I believe that Dr Liu is still practising at the Kunming Tongren Hospital and that the hospital still welcomes overseas patients. He does indeed have an excellent reputation as a surgeon (and is a charming person besides). I don't how surgeons in the U.S. and Europe view untethering chronic patients these days, but when my son was exploring it they seemed to be doing it to prevent further damage to the cord in situations where the person was already beginning to lose function, rather than to improve function. If a regenerative treatment (stem cell transplant) becomes available and a patient has tethering, would untethering surgery not be done at the same time as the transplant, as in the China SCI Net trials?

  6. #6
    Quote Originally Posted by lunasicc42 View Post
    The thing is that there is frankly there is not enough published data available YET for me to participate in umbilical cord blood treatment but the untethering aspect of it intrigues me so far since no one else will currently do it so I am stuck until I get that taken care of. I am wondering if anyone can recommend a specialist; even out of county because as far as I know: my Spinal cord would require untethering before I can undergo a regenerative treatment right? I mean it has to be done but who is going to do it?
    A very long time ago I read that a doc at The Miami Proj had been successfully untethering cords. The article explained how the doc would place a slither of fat between the dura and drained sirinx so that it wouldn't re-attach and refill. I'm pretty sure the doc was either Barth A. Green or W. Dalton Dietrich.
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  7. #7
    Does every SCI individual get syrinx?

  8. #8
    My neurologists, Dr Jason Huang in Temple, TX who has worked with Dr Young, advised me NOT to untether my cord because of danger of losing function. I respectfully disagree, Baylor Scott & White is not a hospital where research is conducted. I used to be surprised how physiatrist, neck & back specialist and even neurologist were not up on the latest research, treatments, but not anymore. In my opinion some docs, not all, are happy to just practice what they learned back in the day or just don't have time to new therapies / treatments. I certainly understand untethering surgery is very complicated but I
    believe that done by the right doc it can help substantially. Here's a little on a study done a while back.

    "In a pre-post trial, Falci et al. (2009) reported that spinal cord untethering resulted in improvement in neuropathic pain, sensory and motor functions. Falci et al. (1999) found untethering and shunt tube placement resulted in a significant improvement in light touch, pinprick and motor scores in SCI patients without previous syringomyelia surgery. Two case series (Lee et al. 2001; Lee et al. 2000) assessed the result of untethering only, shunting only, and untethering and shunting in a group of SCI individuals with syringomyelia. Both studies found that more patients in the untethering only group had improved spasticity than patients in the other groups. Motor function and sensory loss improvement was common in all three groups. However, the shunting group only demonstrated more improvement in gait than the untethering group."

    https://scireproject.com/evidence/re...t/untethering/
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  9. #9
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by ineedmyelin View Post
    A very long time ago I read that a doc at The Miami Proj had been successfully untethering cords. The article explained how the doc would place a slither of fat between the dura and drained sirinx so that it wouldn't re-attach and refill. I'm pretty sure the doc was either Barth A. Green or W. Dalton Dietrich.

    I live in tampa and it was dr. Levi down in miami that did originally decide to shunt my syrinx instead of untethering it...it has been like 10 years since and when I am in miami for w2w I am going to to revisit them and see if they have any new opinions or surgical techniques. I was asking here to see if anyone knew of any new better options or specialists ...
    "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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    Senior Member lunasicc42's Avatar
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    also, I have never really mentioned this because I thought it could be taken as minimizing other peoples pain and I don't want to jinx myself but ive never had any neuropathic pain. I have also heard that there is an unpredictable risk of neuropathic pain appearing when there was none before if a person with no neuropathic pain undergoes detethering, I think that was what mainly influenced their decision not to detether originally. Some kind of treatment; although not a full cure is going to come and Honestly my cord is going to have to be untethered Sooner or later....it's like impossible to find a willing surgeon but like I said...it's going to be necessary Sooner or later
    "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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