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Thread: Taiwan

  1. #11

    Good news.

    Glad to hear about your ordeal.You might have helped some people along the way.This 1 to 5 to 10 year thing I have been hearing that since 1966.

    I will be looking forward to how the outcome is in the next few months.Good Luck.
    Mike T12

  2. #12
    Best wishes and a speedy, bountiful recovery Vgrafen, I'm glad you were able to gather enough resources to go!

    Sounds like you'll definitely get some return.

  3. #13
    Senior Member vgrafen's Avatar
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    Thanks, everybody, for the words of encouragement; believe me they help.

    Still got the flu and bladder infection, but I just did a catheter and the urine is finally clear. Every day brings more and deeper sensation; really mad-dog spasms, especially in bed and when filled with piss. Every time I deep breath, yawn, touch anywhere near or below my injury, my legs go nuts. Had an uncomfirmed voluntary right leg extension, the thigh muscle going nuts and I just might have moved it myself. Honestly can't say, but I AM improving. More happening right side than left, but there, too, I feel more and more.

    Reply to email from Chu-Chu: Cheng performed a 'laminectomy' on me, and 'neurolysis of the spinal cord.' These are the terms he used.

    Chris, no bad vibes. We complete plegics have one hell of a daily struggle, para and quad, and shit gets tossed about too easily. My only enemy is paralysis, not you, brother.

    Eric, I'm not really familiar with biofeedback and what it entails/does; can you give me a description/explanation, is it something only available at big-time hospital/rehab centers, and does anyone know if UC Davis has it? I know my local rehab center does not.

    Bilby, the foundation we are attempting to put together will do something along that order. It is a necessity, and once we figure out how to legally inform patients in the acute phase, I don't give a damn who or which doctors we offend bypassing their closed, comfortable fiefdoms and trying to give patients at least the semblance of choice. God forbid another person has to suffer in ignorance if there ARE legitimate options available. Anyone who wants to get in bed with us on this project let me know.

    mkowalski, I just have to assume he did the same for you as he did for me. I'll ask, though, when I see him tomorrow, if you'd like. Not a word on OEG's, but from what little I understand about stem cells and Cheng, he holds real hope for it in addition to his growth factors. The 4 to 5 year mark is when he sees it being therapeutically applied/available, but human tests sooner. The scrapping of embryonic stem cell research put them back 2 years, but he said that's a good thing, meaning one less dead-end road to waste time on. Also, and this is from me, based on 'reading through the lines' of what his staff was saying, stem cell applications in use elsewhere (you know where they're at) are to be considered DANGEROUS, UNSAFE AND UNRELIABLE!!! Cheng and his people wouldn't outright say this
    -they obviously can't- but the message was delivered to me several times: not yet. As for non-invasive therapies currently being developed, Cheng indicated a person would still need some form of decompression/spinal cavity opening in order to prepare the region for stem cells, etc; somehow the initial damage from the time of injury must be corrected. He said, 'I don't think it is possible' when I asked if stem cells or other drugs could simply be injected and recovery guaranteed. The surgery would be needed to repair and prepare the area.

    Tired, drained, but sensation just swarming about, so the spirit stays bouyed. Kind of frustrating when one thinks how easy it is to simply move a fully functional finger as opposed to the effort it takes to try to get these dead legs to respond. Still, this work I must do, and I'm really looking forward to getting into my standing frame at home and seeing how/if that helps.

    By the way, stay away from the pig eye soup here, man, I'm talkin' the strangest gas you EVER tasted coming up from the gut!

    vgrafen

  4. #14
    cool Vgrafen.,
    When i was there i didn't had the chance to have big talks with Cheng., on the other hand the nurses were quite nice and friendly
    At the time when i spoke with Cheng about stem cells he was concerned with the profileration of tumors after a stem cell transplant.., glad that he his very optimistic about it.
    How are your meals there ? man, i starved while i was there., i thinks that was the period of my life when i eat so many hamburgers and hotdogs.
    I completely gave up on buying local food.
    I remember once i bought a green ice cream, and the green was because it was a peas ice cream
    When i got back i couldn't see a hamburger in front of me.

    hope you the best,
    Bruno

  5. #15
    Super Moderator Sue Pendleton's Avatar
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    "As for non-invasive therapies currently being developed, Cheng indicated a person would still need some form of decompression/spinal cavity opening in order to prepare the region for stem cells, etc; somehow the initial damage from the time of injury must be corrected. He said, 'I don't think it is possible' when I asked if stem cells or other drugs could simply be injected and recovery guaranteed. The surgery would be needed to repair and prepare the area."

    Vgraf...can you ask the Dr how he would deal with someone who has no injury but whose paralysis is due to ischemia (lack of oxygen to the cord due to stroke)? Can his growth factors be delivered via a lumbar puncture or spinal tap instead of a full invasive procedure? Thanks

  6. #16

    Congrats VGrafen

    Just one quick question that I know has been asked, but I haven't been following this. What level and how long have you been down. Thanks.

    Goody

  7. #17

    ? for vgrafen

    could you please ask dr. cheng if someone who has had dr. kao's surgery in 1999 would still be able to have dr. cheng's cocktail?? i have tried to get a hold of dr. cheng now for months without any luck. thanks, and good luck with your recovery!!

  8. #18

    ? for Davidh

    David,

    You had Kao's surgery in 1999? Did you see any results?

    Also, I noticed you sold a Neuro Care stim unit a couple of months ago. Did you participate in their clinical study on SCI - directing AC current through the injury site? I've been using the unit in this manner (worked with Tom Oliver) and think he could have been on to something. Unfortunately, it seems the company is going out of business (or maybe just this unit)

    Thanks, Jan

  9. #19
    Senior Member vgrafen's Avatar
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    Fighting this damn bladder and flu still, chills just suck. 2 days before I get home. Saw Cheng today and everything looks good. He's still more interested in the deep burning pain than any motor improvements, as he feels I have 'too few fibers remaining' to regain anything substantially motor-wise, though he also adds,
    'I've seen a couple chronic cases worse than your's that did regain limited motor.' Time will most certainly tell.

    Bruno, Cheng dropped embryonic stem cells research BECAUSE of fear of tumors. He's doing bone marrow stem cell research because of the near to non-existent problem of rejection by using one's own tissue. By the way, did you recieve just the injection, or did he perform the laminectomy on you? As for food, I eat the basics, fried rice, some noodles, lots of wonton soup. Haven't realy been hungry yet, as this flu keeps the appetite low.

    Sue and Davidh, I'll have to ask him via email, as he left after seeing me today for a trip to Karolinska Inst. in Switzerland. I do know that his growth factors CAN be delivered through injection, but he prefers to clean the entire region surgically to increase chances of recovery.

    Goodydoc, I'm t-6 complete, since Oct. '99.

    Some mistakes I made:
    1) Two days after surgery, I ate some fried squid. Ooops, a no-no, as my bowels were asleep due to morphine, aneasthesia, etc. The gas and bloated gut that quickly took place were simply indescribable, and my wife spent hours massaging my gut. Took a couple bad days to get better. Never experienced gas like that, should have stuck to broth and yogurt. Pain is a great teacher.
    2) In setting up my trip, I asked all the pertinent questions I could and was assured that I faced no difficulties after arrival. I assumed that Cheng's people had everything worked out for my transport, post-hospital stay, rehab and most importantly, payment vehicle, after asking them initially. Reality struck hard: not even close, and nobody knew what the other guy had said. Total Keystone cops. Thank god for my wife, and my friend who lives here, who got in there right away and did everything they could to mitigate the problems. Cheng's staff presumed that I had taken care of everything prior, and had brought cash, while I assumed THEY had it all taken care of, and the money I could withdraw from my account, which I found out quickly I couldn't, due to oddball Taiwanese rules here. I was gentle but firm with them later and offered several suggestions which I sure hope they use. They need a transport system beyond taxis (a nightmare), a nearby hotel totaly accessible (although the KG Landmark has been great and they've now got a room set up that will do), and they need to have their timelines outlined and lists of what one should bring, etc., AND some easy way to pay the bill beyond cash and Western Union. I suggest VISA, which makes sense to them now, after the fact. You'd think all this would have been worked put before.

    Can anyone fill me in on biofeedback and what it does?

    Sensations surging, much more of my middle reporting in, though no further motor movements; damn tough to move anyway in this chair, I get better results laying in bed.

    vgrafen

  10. #20
    vgrafen, thank you so much for all your updates. They are very valuable to all of us here.

    Biofeedback is simply a muscle training method where you have a machine record the activity of specific muscles. Using the information feedback from watching your muscle activity (which is more sensitive than watching or feeling the muscle), you then train yourself to move that muscle a little more each day. You can get surprising amounts of muscle movement and control through biofeedback. What many people do not realize, however, is that the training does not generalize to all muscles. In other words, if you train one muscle to do something, it does not necessarily mean that all the surrounding muscles also get more function. Also, if you train that muscle to do one thing, it may not be able to do something else. There are also many ways to do biofeedback besides using electromyographic signals. You can, for example, use force feedback, i.e. have a display of the force that your muscle is exerting.

    Wise.

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