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Thread: meeting with Carl C. Kao

  1. #61
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    Regression?

    I'm curious about something...I spoke with another gentleman yesterday who had the procedure. He is urinating on his own. He is getting sensation down to the bottoms of his feet. He indicated that initially when the surgery was first done, he regressed somewhat.

    What is the likelihood of getting worse with a procedure like this one ? (myletomy?)

    Eric Texley

  2. #62
    dr.young,so is dr.kao getting these axons to grow out of the injury?what is he doing that is making this happen?

  3. #63
    Eric, when we spoke to this gentleman, he also said that we need to be prepaired for a regression of sorts after the operation, he said that Dr. Kao does not really bring this up and he feels it is important for everyone to know this as many have had the same thing occur. He said it lasts about a month...it would seem that he had some feelings/sensations below the injury level before the procedure and after he returned home those seemed to be gone, he was mortified to say the least...thinking that perhaps he was "more paralyzed...just my luck" he said! A call to Dr. Kao eased his mind somewhat, as he explained many had the same experiances, it will get better, be patient. Within a few wks. to a month things started getting back to what they were and better after that...Until I get to talk to Dr. Kao (who is already in Ecuador) I can't ask why this happens. The first of his 12 patients leave today ~ Gregory Perry~ and Ed Paige leaves on Tuesday. I think Gregs operation is on Monday. This gentleman we spoke to said that although he does not have full feeling to his feet he has sensations to his feet, somedays more than others. HMMMM, wonder why some days its better than others and why there seems to be a regretion of sorts after the operation...

  4. #64
    Senior Member giambjj's Avatar
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    Dr.Kao

    Birdie:

    I just talked to Dr. Kao. He is in his DC office and awaiting my son's MRI by Fed Exp.

  5. #65
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    bla

    The thing is...this is a MAJOR surgery. How many surgeries like that can a person get in their lifetime? and to my knowledge nobody has recovered completely from the operation.

    Use your best judgement before you let someone do something like this...a "cure" for this stupid condition might be here already, but as a combination of existing therapies. Don't be someone's lab animal...

    Eric Texley

  6. #66
    Eric, INDEED! This is MAJOR SURGERY! Again, I need to let you and everyone else know that I am not trying to push this on anyone and I would advise not to run to the phone and just call Dr. Kao on a wimm! I took 8(+/-) months checking into this as well as other things. This may not be for everyone, and that's fine. Dr. Kao will tell you straight out...A) if he feels that he may be able to offer any type of functional recovery or sensory recovery. He will tell you and has told others, if he feels that this will not offer much for you. B) he will tell you that if you are not willing to work towards this {i.e. therapy, with a positive mind set} than there is no reason for him to work towards this and no reason for you to waste your money and time. C)This is not the cure...he will be honest about that, this may offer you a more quality filled life and more control over your life. This will not affect your chances in the future when a cure does come. I respect your oppinion and the reasons for it. I admire you and others for being able to have so much faith that the worlds researchers will find this cure soon, and to be able to wait for it. Here's the thing, almost every researcher, doctor, SCI individual...they all agree for the most part, that the cure WILL not be just ONE SINGLE thing (no one magic pill, no single therapy, no single procedure...). It WILL BE a combonation of things(therapies, procedures, meds..). Now I realize that many may scoff at this, but bare with me, WHAT IF, this procedure is part of the cure? I'm not living in a fantasy land...MANY are doing exactly what Kao is doing only with a differant twist to it...the Miami Center is researching this, Dr. Cheng is doing some of this, Dr. Rafeal in Mexico is doing some of this, as well as countless others looking into and researching much of these ideas. It's a long shot perhaps, but just maybe I will be one step ahead when the cure comes...Maybe I will be one step behind...I am not sure nor are you. I have thought about this, I have read about this, I have done my homework on this. The thing about being a lab rat is that even when the cure comes...someone has to be the lab rat ( alot of someones have to be the lab rat), or we will never see the cure at all.

  7. #67
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    Incidentally...

    ...Dr. Kao gave me the best physical examination anyone has ever given me in about 10 minutes. For a year and four months, I've been told by the whole world (except by Dr. Brucker) that my injury was complete. Dr. Kao found a muscle, (which I ASKED about in inpatient therapy in Miami, mind you) and SHOWED me on a colorable muslce atlas where it was. We then looked it up on the internet. It is innervated FAR below my injury site. Yet the "expert" physical therapist I had told me repeatedly that it was innervated above my injury site, and I was complete...

    Don't these people have a qualifying exam or something? My therapist couldn't even pop a wheelie in a chair... Why should somebody who can't pop a wheelie be teaching me how to pop wheelies??? And in the age of ADA, WHAT IS THE POINT in teaching curbs??? Athletic stunt?

    Eric Texley

  8. #68
    Ed Paige and his companion Teddy Lancaster will be leaving for Ecuador Tuesday to have this procedure. Perhaps you guys can all say a prayer or two for him and maybe wish him the best! His web page is: http://runningbear.com/main/Ed/text/Main-Page.html

    Teddy's email is: Teddy@runningbear.com I'm sure Teddy will keep everyone updated on the web page, she plans to bring a laptop too!

  9. #69

    Interesting bit of info.

    It would seem that the Discovery channel is interested in doing a special show on nerve transplants/regeneration and are calling Dr. Kao in Ecuador, to see if they might be able to bring a crew down there. Just got off the phone with them yesterday.

  10. #70

    News from Ed Paige in Ecuador...more to come

    We finally arrived at 1AM...TIRED!!!

    We had to change planes in Washington DC. A real hassle for someone in
    a wheelchair. They transfer the person to THEIR wheelchair (we packed
    up Ed's new one in a BIG cardboard box and sent it with baggage). To
    get on the plane, he is transferred to an "aisle" chair and have to
    CARRY him in it onto the plane. Then they have to LIFT him out of the
    aisle chair into a seat. Time-consuming and I worried about their
    experience. We managed with no problems, tho.

    The flight leaving DC was delayed, something on one of the instrument
    panels was not working, so their techs got a new part which still did
    not fix the problem. Here we sit for an hour knowing we only have two
    hours before boarding in Miami for Quito.

    Then they told everyone with connecting flight to move to another
    plane. Of course, instead of being first, Ed was last...they had him
    half way down the plan aisle and then they announced the instrument
    panel problem was fixed. So, 75 minutes late, we leave DC.

    To add to the hassle, when we arrived in Miami, no gates were available,
    so we sat on the runway waiting our turn. Our flight to Quite was
    scheduled to leave from Gate B-12 at 7:10 PM. At 7 PM, we are told our
    plane (from DC) was was to be the next plane IN to gate B-12 after the
    current one left. HEY, that's OUR flight!!!

    I was tired and cranky and worried. I was NOT prepared to take care of
    Ed in a hotel overnight. I begged and pleaded and something worked.
    Our plane was given gate B-6 and Ed was whisked to gate B-12 (half and
    hour late) and we got in FIRST CLASS!!!! American Airlines said they do
    NOT upgrade without payment, but I think it was easier for them to get
    Ed into the bigger seats closer to the front.

    Never having flown first class was interesting. Instead of paper cups,
    there were glasses. Instead of plastic trays for food, there were mimi
    table cloths, cloth napkins, real china and glassware and you are served
    one course at a time.

    Arrival in Ecuador was as normal as could be expected. Long lines at
    Customs, hardly anyone who speaks english, but a handful of $1.00 bills
    helped. Funny, American Airlines did not tell us about or give us entry
    forms to fill out, so that was another delay.

    Thank goodness ALL 6 of our bags and boxes arrived at the same time. It
    took two bellboys to whisk us outside where a lovely lady, Patricia" met
    us and escorted Ed and I to their van where everything was transferred
    with MANY helpers (too many perhaps). In less than an hour, Ed wa sin
    bed and I was sitting in their "smoking room" (my first cigarette in 12
    hours) to fill out paperwork.

    I was glad to get into bed. We woke up early (we'll need a nap later"
    and while I was cuddled with Ed (one of the RARE moments we can hug
    without his brace), Dr. kA came in to greet us. He was very please at
    Ed's condition (he does look and IS MUCH healthier than 7 weeks ago when
    Dr. kA met him). He gave his regrets that they would have to shave off
    his beard.......

    We have met some of the families of several other patients. The
    hospital is OK, very busy, again, too many helpers ALL wanting to help.
    Everyone VERY friendly.

    More this evening.....(along with photos).

    Off to local hospital for some special x-rays. In the morning
    (Thursday) they are taking us to the Equator. Ed's ONLY chance to
    tour....
    --
    Teddy Lancaster

    In Ecuador until September 4th....

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