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Thread: meeting with Carl C. Kao

  1. #221
    Scribe,

    I'm a T12 COMPLETE who is planning on having the surgery and happens to live nearby. Give me a call and I'll fill you in on everything. I'm trying to schedule in March. By the way, I read that Dr. Kao has had the greatest success with lower thorasic and lumber injuries (although this information was quite old - don't know if it still applies). Being a complete injury 21 years post, this will be a true test. I have a real good feeling about it.

    Jan

  2. #222
    Senior Member
    Join Date
    Aug 2001
    Location
    Sonora, CA, USA
    Posts
    107

    Good to hear from you

    Jan, it's nice to hear from you again. I'll give you a call. As you know, I'm keenly interested in your procedure with Dr. Kao. You should do well with your intelligence, emotional strength and great physical condition. You put me to shame. I haven't taken good care of myself since I left the hospital in July 2000.

    Keep us informed with your messages. Scribe

  3. #223

    Scibe,

    Don't put yourself down. There is a huge difference between 21 years post and 1+. It can take years to pull yourself together after such a horrific blow. Your on track...keep the Faith!! Life goes on and it WILL get better.

  4. #224
    Senior Member
    Join Date
    Aug 2001
    Location
    Sonora, CA, USA
    Posts
    107

    Thanks

    Thanks, Jan. I've always been too hard on myself but I've never been been able to shake this personality defect.

  5. #225
    Barbara called our house this past Friday when I was gone and spoke with Jim - she was calling to confirm her staying with us from Monday to Wednesday. Monday morning we headed to Waukesha, WI to see the Hammer clinic, meet
    Kathy Hammer, Barbara, and believe it or not 7 other Wisconsin "past Kao patients". You should all know that there are 31 past Kao patients in
    Wisconsin alone. Texas has the most and we are next. The clinic opened about 3 weeks ago and they are still waiting for all the equipment
    to arrive. We were all there to see the "walking machine" and to try it out. You don't use the "Kao boots" -or- as Jim likes to call them
    the "magic boots" on this equipment as they are too heavy. High top shoes are best (for ankle support). Jim was the last to use this machine which was great because we could watch everyone else do it first. I am sold, as is Barbara!!! This is a wonderous machine and with the
    proper use and schedual this may be better then the invention of sliced bread!!!!! Everyone loved it!!! I think we scared poor Kathy Hammer the PT with our group!!! Jim who is so very skeptical about everything and anything actualy liked this as well. Jim was great!!! His legs actualy knew what they were suposed to do or so it would seem (one right in front of the other, knees bending with each step....)!!!!
    Kathy Hammer has a list of the places around North America that have this machine (http://www.jsonline.com/alive/news/jan02/10474.asp) and will share it with all of you I am sure. I do know there is one in Mississippi (the closest one to Alabama) and that there is one in the Washington D.C. area. We were told that 2-3 times a week is the max. to use this and the session itself is about 5-10 minutes long-or at least it was that long the day we did it.
    Everyone that was there on Monday had leg and/or feet sensations
    after using it. It is quite the work out, you work a sweat up!!!
    This is not only for para's-quads can and did use this as well. I am told
    that a quad may actually bennifit quicker from this. One particular
    fellow that used this machine 2 times already had feelings in his
    legs for the first time in 5 years that lasted just over 8 hours!!!
    Next Jim used a bike-like thingy (I think it's the NUSTEP) and can be
    seen at http://www.nustep.com/smart/media/photos.html I'll check into that- any way Jim again was
    the last to use this and he did not have to have his feet or knees strapped in
    like the rest of the people-his legs just
    peddled!!!!!!!! First he used the arm bars that move your legs...and
    they asked him to just do it with his legs and not his arms to
    help...he said "you're kidding me , right?" but he tried and.....HE
    COULD DO IT!!!!!!!!!! Barbara was amazed!!! He could not do it
    easily...it took alot of effort but he did it a couple of times!!!
    Barbara came home with us and stayed until this morning when we took her to the Green Bay area to meet another patient. She worked
    Jim so hard-and he needed it!! He used the boots and the walker. The
    walker was way too high for him so she marked it and Jim took it out
    to the garage and cut it down. She taught Jim how to use the walker
    and he can now stand with it. He can get from a sitting position (in
    a chair) and get up to the walker and get balanced, lock the knees
    in, and hardly hold on with his hands and it's a miracle!!!!!!!! We
    went in the kitchen, as carpet is hard to work on and the kitchen has
    vinyl floor. He got up to the walker and he took 6 steps with it and
    Barbara in front to help move the walker, and our son behind Jim in
    case he fell and me videoing this all!!!!!!!!! PEOPLE- HE TOOK 6
    BABY STEPS!!!!!!!!!!!!! I was crying!!!!!!!!!!!!! Barbara was
    cheering!!!! OUR KIDS WERE SPEECHLES!!!!!!! JIM WAS SCARED AND
    DRAINED!!!!!!!!! His legs have been tingling and surging with an
    energy he has never felt before!!! His legs want to move, they do
    move when he stands, they want to walk!!!!!!!! THEY SEEM TO REMEMBER
    WHAT THEY ARE SUPOSED TO DO!!!!!!!!!! Can this be? Barbara said
    that if Jim does this every day, he WILL be walking by summer to some
    degree!!!!!!!!! We are going to call Kathy Hammer and see when we can get in to her clinic again. It is about 1 hour and 20 minutes
    from our home and 10 minutes from my moms home. I have all the
    literature and a CD about this machine. Kathy Hammer can also help with
    information!!!!! Jim is out in the living room right now standing
    and sitting with his boots and walker...he says it hurts his stomach
    more then a sit-up!!! HE FEELS HIS STOMACH!!!!!!!!!!!!!! More to
    come later!!!!!!!!!!! Robin
    *************By the way Jim stopped taking the 4-AP about 2 weeks ago and is done taking the other medications prescribed by Kao as well. He only had to take those for 6 months and this month is 6 months since he had the Kao operation. We are looking into a herbologist that helped a friend that is about the same level as Jim and also had the Kao operation just before Jim did. He does not have to cath any more as he can urinate on his own and has been since before Kao's operation. We will let you all know what we here.

    [This message was edited by BirdeR on February 13, 2002 at 10:23 PM.]

  6. #226

    picture of the treadmill that Kathy Hammer has at her clinic

    This is a picture of the treadmill system that Jim and the others
    were on at Kathy Hammer's clinic
    http://www.customizedfitness.com/loco.jpg

  7. #227
    Senior Member
    Join Date
    Jul 2001
    Location
    Boca Raton, Florida, USA
    Posts
    1,451
    Birde,

    I'm really happy for Jim's progress and will pray for it to continue. Albert Bohbot has individuals walking on treadmills in his clinic, but in braces. I've recently been looking for a tradmill with a very stable set of handrails to practice on. The nice part about the French braces is that they articulate in the knee joints, so as to allow for a person to practice leg extension.

    I'm curious why someone hasn't developed a stim aparatus to allow for the walking motion, independent of the harness suspension...

    Eric Texley

  8. #228
    Senior Member
    Join Date
    Aug 2001
    Location
    Sonora, CA, USA
    Posts
    107

    Good news

    Birde, that's great news about Jim.

    I visited with Dr. Kao today and he thinks he can help me. I'm a T-10 complete. I got emotional seeing an MRI of my spine for the first time. It was chilling to see the burst at T-10 and a bone pressing against my spine.

    I may schedule the Kao operation in March. This is a major decision for my wife because we'll have to take out a home equity loan to pay for it. That's something we're loathe to do but I'm 50, Dr. Kao is 67, and I'm afraid he'll retire before long. He's the only U.S. neurosurgeon who does this procedure.

    The best to all of you, Scribe

  9. #229
    Senior Member
    Join Date
    Aug 2001
    Location
    saratoga springs, ny
    Posts
    187

    Scribe

    How much does the operation cost?

  10. #230

    Kao Patient Group

    Here is the yahoo site that Kao's past patients and some future patients post and go for information (there is about 40 in the group): http://groups.yahoo.com/group/Kao_Patients/ The entire thing is about $28,000 but may cost more if you are a quad and are going to have the arm/hand surgery as well. That cost covers it all...plain, room, food, surgery, laundry service, transportation, boots, walker, hyperbaric therapy, limited PT, daily messages for patient, the food/room/laundry/travel costs for your guest who comes with. It covers doctors fees, medications and standard tests. We had extra tests and so we brought extra money for that "just in case". It's all cash. Check the group out at the link above for anyone that wishes to know more or hear more.

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