Thread: ChinaSCINet Update

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  2. #2612
    Senior Member lunasicc42's Avatar
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    is there somewhere that I can read a detailed description with information on how the trial is to be set up and exactly how the surgery is performed for phase 3? Just curious here mixed with anxiousness
    "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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  3. #2613
    Senior Member lunasicc42's Avatar
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    I mean based on phase 2 did you learn about anything to do or anything not to do? Besides Possibly lithium
    "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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  4. #2614
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    Jim, I have a question regarding the inclusion criteria for the trails that are going to take place soon in the USA.

    Is there going to be a lesion size limit?

  5. #2615
    Senior Member lunasicc42's Avatar
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    When do we get the next official clinical update about chinascinet?
    "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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  6. #2616
    Quote Originally Posted by lunasicc42 View Post
    is there somewhere that I can read a detailed description with information on how the trial is to be set up and exactly how the surgery is performed for phase 3? Just curious here mixed with anxiousness
    The next Trials in India, Taiwan, and the US will be Phase IIb. When the protocol is accepted by the FDA it will be made known. I have said a few times what it will be.

    Quote Originally Posted by lunasicc42 View Post
    I mean based on phase 2 did you learn about anything to do or anything not to do? Besides Possibly lithium
    The first subject's surgery was too long and had terrible headache post-op due to loss of spinal fluid. I'm sure they learned many other lessons I am not privy to.

    Quote Originally Posted by Sparky831 View Post
    Jim, I have a question regarding the inclusion criteria for the trails that are going to take place soon in the USA.
    Is there going to be a lesion size limit?
    I believe the limit is 3 segments but I'm not positive. I'll ask Wise when he gets back.

    Quote Originally Posted by lunasicc42 View Post
    When do we get the next official clinical update about chinascinet?
    There isn't an official follow-up after 2 yrs because it wasn't part of the protocol, but I believe they want to bring the subjects back at 3yrs. This is a huge undertaking because many of the patients live far away in secluded areas that are not reachable even by car. Many can't make it to the hospital so the team has to go to them.

  7. #2617
    There isn't an official follow-up after 2 yrs because it wasn't part of the protocol, but I believe they want to bring the subjects back at 3yrs. This is a huge undertaking because many of the patients live far away in secluded areas that are not reachable even by car. Many can't make it to the hospital so the team has to go to them.

    When you say about a follow up . do you how quick if anything that they got back . Or would it not been easier to give the trials to patients that could have been easily contacted
    AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


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  8. #2618
    Senior Member lunasicc42's Avatar
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    About when is the 3 year follow-up

    Jim I know we are kinda always hounding you ... Just know that the information that you have been able to provide to the community has proven to be quite valuable
    "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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  9. #2619
    HI. Curious question. Don't you need abs and back muscles to walk and have balance. Just wondering because i have no control of my lower back and my abs.
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  10. #2620
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    Quote Originally Posted by Allan1 View Post
    HI. Curious question. Don't you need abs and back muscles to walk and have balance. Just wondering because i have no control of my lower back and my abs.
    That depends upon your definition of walking. If you use HKAFOs they will stabilized all the way up but you have to "walk" stiff-legged using hip-hiking to advance your legs. You also have to have some hip-flexor response for this otherwise the PT will do all the work.


    I have no abs or lower back but some hip-flexor/hip-extensor and I "walk" with a PT who is on a rolling stool behind me stabilizing my hips, blocking my knees and often helping to push my legs. I do this with no braces, AFOs (ankle/foot) and KAFOs (knee-ankle-foot) braces. I actually think the no brace version feels the most natural.


    If you want to "walk" without a PT you'd likely need parallel bars or a good, wide walker and HKAFOs. Even then you'd need some training on the sit-to-stand and the stand-to-sit and it'd be best to have someone nearby to assist. I don't "walk" at home for this reason, but it gets expensive to do it at PT. Once my 20 insurance visits are up then I have to pay about $130 for two hours that includes one hour of stretching, trunk stability and standing then one hour of solid walking.
    T3-T7 complete since Sept 2015

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