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Thread: ChinaSCINet Update

  1. #2671
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by lunasicc42 View Post
    *bangs desk angrily and whinily" GIMME GIMME GIMME! HOW MUCH LONGER!
    But really I think this therapy is the one that will be most optimal for me because I require detethering and it's part of this procedure...need that before I can do anything

    And a question maybe for SCI-Nurse: although no doctor would perform an actual detethering on me but decided to take the safer way out and place a shunt in it but not before the syrinx rised and totally took out what little function I had in my left arm...do you think detethering and the Scinetusa procedure has the potential to bring my left arm function back or is that gone forever?

    SCI-Nurse or Jim

    Any insight on my question regarding my syrinx Jim and what may need to be done?
    "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. #2672
    Quote Originally Posted by jcalix View Post
    hello Jim, I have few questions after Phase III how long it takes to became comercial?
    and if you know how much approx. the therapy will cost for those who don't have insurance? thanks
    In the previous post above Jim said the treatment would cost around "150k".

  3. #2673
    So happy to find this thread, especially as a family member of a patienet in Hong Kong.
    Will surely read through the thread!

    My bro got c6-7 SCI(probably complete, doctors did not say) last year. Doctors in HK are so pessimistic.
    They just said he got no chance to walk again and no trials are done in Hong Kong.
    When I asked abt stem cell trials, they said it's not very helpful and perhaps the cells will look better under microscope, but not really helpful in terms of patient's perspective.
    Now 1 year post injury the hospital just keep asking my brother to consider discharging and live with family (but no rehab training done at all)

  4. #2674
    Feel your pain here. Almost identical injury, but son is 11 years post. He still lives at home. All efforts were focused on getting him independent. Several key things have worked--keeping his weight at high school age weight, around 140 which allows for self transfer. Not accepting a power chair. A power chair does not use shoulder or bicep muscles--manual chair (light weight titanium) requires use of muscles. Slowly weening from baclophen--spasms are muscle exercise though annoying and sometimes dangerous in leg locking situations that throw off balance. The long term result is less atrophy in the lower limbs and elsewhere. Exercise like riding a stationary recumbent bike builds muscles in the shoulders and biceps. Son has a 3-wheel bike for the road and we have ridden 18 miles 3X per week in the past. Same with a manual chair. Consider planning for events for the brother that he used to do. Lots of adaptive sports possibilities. The guy must work body and brain to prevent depression. So, create things and events that he can look forward to. My son finished college (very tough), then began to get jobs using computers and working out of the home which is a huge plus for the brain and independence. Adaptive vehicles are great for extending independence. We have a truck that the front seat comes out of the truck and lowers down to the height of the wheel chair. Then, a hoist picks up the manual chair and positions it in the back of the truck. We use a vinyl cover over the back of the chair when in rainy conditions. He pulls the seat cover every trip and puts it in the truck. Living at home will require some special equipment and adjustments to allow for self transfer and self showering. Huge reduction of work and effort of family members. Have also been to China twice for stem cells which did not work.

    Can give a lot more pointers if you send a private message with an email address.

  5. #2675
    Bowie, was your brother injured in a fall while hiking? I read in the newspaper about this happening to a young man about a year ago.
    I live in Hong Kong and my son was injured almost eight years ago. We know all about the pessimistic attitude of the doctors.
    Maybe we can help your brother by telling him about the rehab my son has done both in Hong Kong and around the region.
    I have been in contact with a neurophysiotherapist in private practice in HK, who trained at Rancho Los Amigos. A friend who has MS has been working with him and has had very good results. Would be really happy to meet you and your brother.



    Quote Originally Posted by bowie View Post
    So happy to find this thread, especially as a family member of a patienet in Hong Kong.
    Will surely read through the thread!

    My bro got c6-7 SCI(probably complete, doctors did not say) last year. Doctors in HK are so pessimistic.
    They just said he got no chance to walk again and no trials are done in Hong Kong.
    When I asked abt stem cell trials, they said it's not very helpful and perhaps the cells will look better under microscope, but not really helpful in terms of patient's perspective.
    Now 1 year post injury the hospital just keep asking my brother to consider discharging and live with family (but no rehab training done at all)

  6. #2676
    just some news to share when I contacted ChinaSCINet to register for trial.

    "...we have not planned to conduct any clinical trials on spinal cord injury in Hong Kong this or next year."
    "We are preparing for trials in Taiwan, India and US...
    the trials include three to six-month in-hospital rehabilitation training and one or two-year follow-up."

    Personally I think it is possible for a Hong Kong patient to fly to and live in Taiwan for 1-2 years, but I understand they would prefer local patients.

  7. #2677
    Quote Originally Posted by Sparky831 View Post
    In the previous post above Jim said the treatment would cost around "150k".
    And on my prevoius post he said funds shouldn't be a problem..... I'll check back when I see something on news about it.

  8. #2678
    Quote Originally Posted by Ajstevens View Post
    And on my prevoius post he said funds shouldn't be a problem..... I'll check back when I see something on news about it.
    Wasn't really replying to you! I was replying to jcalix!

  9. #2679
    thank you for reply, but not anyone have $ 150k under the mattress, are you sure that it will cost around that?, I think there are SCI patients like me that we don't have Insurance and $150K is out of our budget

  10. #2680
    Quote Originally Posted by bowie View Post
    just some news to share when I contacted ChinaSCINet to register for trial.

    "...we have not planned to conduct any clinical trials on spinal cord injury in Hong Kong this or next year."
    "We are preparing for trials in Taiwan, India and US...
    the trials include three to six-month in-hospital rehabilitation training and one or two-year follow-up."

    Personally I think it is possible for a Hong Kong patient to fly to and live in Taiwan for 1-2 years, but I understand they would prefer local patients.
    Phase IIb isn't being done in China or HK. The Phase III will be done in China.

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