Cervical possibilities for later scinetusa trials

[Sparky831]

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.

[niallel]

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).

[Jim]

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.

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.

[lunasicc42]

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?

[Jim]

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.

[lunasicc42]

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

[Sparky831]

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?

[lunasicc42]

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

[Sparky831]

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.