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Thread: Cervical possibilities for later scinetusa trials

  1. #11
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    Quote Originally Posted by niallel View Post
    Can I ask why you are asking the question?
    Not meaning to infer anything, just want to understand the thinking behind why people would not want to apply for trials - or why you think they might not apply?
    If is a safety thing I understand, but if its for some other reason it would be interesting to know.
    If its an assurance thing, then what assurances were you thinking of?
    Etc.
    Well I asked the question because enrolling in that trail would probably prohibit you from enrolling in any future SCI trails? I hope this is not case though.

  2. #12
    Quote Originally Posted by Sparky831 View Post
    Well I asked the question because enrolling in that trail would probably prohibit you from enrolling in any future SCI trails? I hope this is not case though.
    Thanks, thats an interesting point I'd not thought about before.

    A lot of other trials let people who have had other treatments as long as the period after the first trial is sufficiently long that any changes would have finished.
    Having said that it would be good if there was more compassionate use options for people who had been on previous trials - although this rarely seems to happen (if ever).

  3. #13
    Quote Originally Posted by lunasicc42 View Post
    Heyo Jim

    If possible could you please tell me all that youre able to about the possible or already seen or not implications for recovery from this therapy on arms or hands. I mean, as you know hand, arm and finger function return are the most wanted things for quads. I have taken it that arm and hand function didn't return but you are looking at things to 'rehab' the forelimbs, are you able to give me any information on how that might work? Are there going to be like certain apparatuses that rehab the arms? hands and fingers? What about umbilical cord blood transplant + Rehab + epidural stimulation? Does that seem like a good combo?
    In order for hand/finger function to return, one must exercise each muscle. Two possible devices are an electric stim simulator from Bioness, and vibrating dumbells from Galileo.

    Quote Originally Posted by niallel View Post
    Thanks, thats an interesting point I'd not thought about before.

    A lot of other trials let people who have had other treatments as long as the period after the first trial is sufficiently long that any changes would have finished.
    Having said that it would be good if there was more compassionate use options for people who had been on previous trials - although this rarely seems to happen (if ever).
    We allow applications from those who have had other treatments more than 6 months ago with no changes.

  4. #14
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Jim View Post
    In order for hand/finger function to return, one must exercise each muscle. Two possible devices are an electric stim simulator from Bioness, and vibrating dumbells from Galileo.



    We allow applications from those who have had other treatments more than 6 months ago with no changes.

    So I have taken it that "in theory ", the cell transplant regenerates the spinal cord which is a conduit to controlling the muscles, but the muscles need to be "reawakened" by rehab to take advantage of the cord being reconnected... So why not add epidural stimulation as sort of a rehab component?

    Lol, am I even making any sense? I am no spinal cord researcher
    What about that?
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  5. #15
    Anthony, we cant combine UCB injections + intensive walking with another therapy until we confirm that it is effective. The results from the trial in China were excellent but they don't mean anything if the US IIb trial doesn't show similar results. If the positive results are confirmed, the therapy can be combined with another.

  6. #16
    Senior Member lunasicc42's Avatar
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    Update: my baclofan pump disqualifies me from their current trial.... My pump is actually on a really low dose, I wonder if I shoot an e-mail asking if I can ween off the baclofan pump THEN apply
    "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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  7. #17
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    Quote Originally Posted by lunasicc42 View Post
    Update: my baclofan pump disqualifies me from their current trial.... My pump is actually on a really low dose, I wonder if I shoot an e-mail asking if I can ween off the baclofan pump THEN apply
    You get very bad spasms?

  8. #18
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Sparky831 View Post
    You get very bad spasms?
    i honestly don't remember... I have had this baclofan pump for like 15 years and it manages my spasms excellently, I barely get spasms but I don't know how they would be without the pump... If they would be manageable or not
    "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. #19
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    Quote Originally Posted by lunasicc42 View Post
    i honestly don't remember... I have had this baclofan pump for like 15 years and it manages my spasms excellently, I barely get spasms but I don't know how they would be without the pump... If they would be manageable or not
    I always believe spasms are kind of good as they kind of exercise your legs and stomach. I have moderate spams and only take Baclofan by mouth 2x a day they also tend to help me sometimes. I've heard stories though of some people having very severe spams to the point they cant be on a wheelchair or even sleep at night. I guess we have to find a balance in between.

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