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Thread: Beijing - MK99's post OEC transplant report

  1. #61
    mk99, the ASIA definition of level is the lowest "normal" level. Neurosurgeons and orthopedic surgeons often use the injury level or the lowest level where there is no more function. We adopted that lowest "normal" level standard because can be applied to "incomplete" injuries. Wise.

  2. #62
    Senior Member mk99's Avatar
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    I thought I'd post a brief update on my progress as well. It's now been approx 3.5 months since my OEC cell transplant.

    I still can't move anything below T4 BUT I have regained yet another patch of sensation around my left ankle. I think (but cannot scientifically confirm) that my trunk control is better. I continue to have some sensation regarding full bladder or impending diarrhea. My bowel program is much better and faster now. And finally, I am also getting a lot more (and better quality) erections.

    My routine now continues to be FES bike, daily standing, stretching and trying to move the damn legs. I tried suspended treadmill training a few times but do not technically qualify for the trial and cannot continue doing this... if I can move something I will be allowed back in the trial.

    Oh yeah: I look forward to version 2.0 of the procedure and would not hesitate to go again if I felt good odds of getting substantial recovery.

  3. #63
    Mk, Im posting this for you and others who had the procedure:

    Did you establish a Pre-op period, where you measured sensation/movement/tolerance/activity level, (including psych-social change, that may impact other physical/behavioral change) etc, that you can compare Post-op?

    It seems from some readings, that much are "guesses" and "I think's", rather than having some clear method to asses change, if any. Did Dr. Huang require any, and/or have any procedures you had to follow pre/post op?

  4. #64
    Senior Member mk99's Avatar
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    Hi Chick.

    My "pre-op period" consisted of an Asia Assessment done by Dr. Huang's team as well as EMG, MRI & a variety of other tests. These were done in Beijing right before surgery. They were repeated post surgery and showed a statistically valid improvement in EMG. It wasn't a huge improvement but there was more electrical current passing through my cord.

    The post-surgery Asia Assessment (done again by Dr. Huang's team) showed a descent in sensation of at least 2 levels.

    Keep in mind that these tests were done only approx 2 weeks post surgery and I suspect more has changed since then.

    I'm not sure this really answers your question. The nature of the beast is such that it's hard to quantify small & subtle improvements such as "I have more trunk stability".

    Of course if the improvement was dramatic, it get's much easier. But so far, no earth shattering dramatic improvements for me. Just small subtle ones.

    hope this helps

  5. #65
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    chick

    The same tests were done for Dr. Lima's patients as well. It may sound like we are guessing alot of our gains but keep in mind that it takes some time for the cord to heal and we are just waiting for a longer time frame to repeat emg tests amd mri's to varify these gains.

    Tim Sloggett

  6. #66
    Senior Member mk99's Avatar
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    Update:

    It's been a while so I thought I'd post a little update here. I am on a plateau and have not noticed any changes probably in the last month or so.

    It's probably too early to say but I suspect my cord damage is severe enough that I will be a better candidate for a combo therapy. It appears that (for me - Asia A complete) OEC cells alone appear to be insufficient to give significant functional recovery.

    Combo therapies are coming. And I'll be there.

  7. #67
    they comming soon..........................

  8. #68
    Mike,

    Thanks for the update. Any info is good info. Hang in there. Plateaus are nothing more than small launching pads to greater conquests. Keep us updated.

    What we do in life echoes in eternity. Maximus - Gladiator

  9. #69
    Thank you for the update, Mike.

    Which combo therapy do you consider your greatest hope at this point?

    Are you concerned that your participation in Dr. Huang's OEC treatment will limit your possibilities for future combo treatments?

    I can't say enough how grateful I am to hear from those who have tried these experimental procedures. Obviously, each of us has our own unique injury and circumstances. We need to hear from a variety of people to get a real feel for how the treatment is working.

    Best of luck to you on the long-term effects of this procedure... maybe it's just going to take a while. My fingers are crossed!

  10. #70
    Senior Member mk99's Avatar
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    "Which combo therapy do you consider your greatest hope at this point?"

    not sure really. Good results were had with Schwann, Rollipram & Dibutyric (sp?) cAMP... maybe throwing in some OECs would really kick some ass? I think we'll find out sooner rather than later. And ESCs may be the secret to a really effective full cure as opposed to the incrementally better cures we are likely to see in the near future.

    "Are you concerned that your participation in Dr. Huang's OEC treatment will limit your possibilities for future combo treatments?"

    Not really. In my opinion, a "cure" will be available overseas long before a fully tested, approved & paid for one will be in North America. It's too simplistic to blame it all on FDA, Bush or lack of funding. And I do my part to change that... but reality is that it is far more likely to happen elsewhere first. (IMHO)

    I'm not overly concerned about disqualifying myself from something that doesn't exist. (yet)

    How about you Jan? Haven't heard anything for a while about your progress after Kao's surgery.

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