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Thread: meeting with Carl C. Kao

  1. #21

    I received this email from Laurance Johnston...thought I would share it....****take note: this patient was C7******

    I received the following email concerning Dr. Kao that I have forwarded to you for your reference.
    Laurance Johnston
    Traci had Dr. Kao's surgery in Argentina in 1998.
    He took sural nerves from the back of her legs
    and using Schwann cells grafted the nerves where
    the injury is at (C-7). Hyperbaric (sp) chamber sessions
    were done daily for 14 days so the nerve graft would
    not die. Traci gets 1/33cm of nerve regeneration per
    month and with 3cm of damage it will take approx.
    7 1/5 yrs. to bridge the gap. Her spinal cord was
    crushed not severed and the injury is NOT completely
    across the width of the cord.

    Traci is making inprovements and is taking assisted
    steps with knee boots (special made). We are checking
    into the Israel treatments that Melissa Holley had, but
    because Traci is considered "cronic" by everyone except
    Dr. Kao, we may not be accepted. One doctor at Ohio
    State, is very interested in Traci for the macrophage
    treatment because she has had a nerve graft.
    Traci has gained some deep feeling since the nerve graft.
    She can feel her butt, feet and lower legs. And recently, a tingling
    feeling across her upper abs and up and down the sides of
    her trunk. We are very encouraged. Thank you for asking.

    Traci's therapy consists of electric-stem, standing, bed exercises
    that Dr. Kao prescribed, arm weights, swimming, bounce back, and
    ab-doer. She takes bee propolus (sp) for nerve regeneration. I am
    always looking for new ways to help her regain as much as possible.

    Before the car accident, Traci was on a singing and dancing scholarship
    in college. She was the front seat passenger in a roll-over, and the only one hurt.
    Had the man behind her been wearing a seat belt, she probably would have
    been o.k. We want her to have the life she once knew back.
    Carol Bryan

  2. #22
    Senior Member giambjj's Avatar
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    Meeting with Dr. Kao

    We just met with Dr. Kao. He stayed about 2+1/2 hours. He examined Jake (a 15 year-old who is 8 months post a complete C4-5 injury from a wrestling accident, www.jake15.com) in his bed and made several valuable comments about his injury.
    He showed us some new exercise routines and two pieces of equipment to bring back function to his triceps and biceps muscles. He stressed the importance of getting Jake to stand for 1 hour each day inorder to prevent osteoperosis wiht the aid of a standing machine. He examined his X rays and found pieces of bone fragements in the C5 area. He wants us to send him ASAP a new MRI to see if the bone fragments are causing cord compression. After seeing the MRI, he will make a full surgical recommendation to us. We also viewed his video and excerpts from his book on SCI treatment. Dr. Kao believes he can restore more of Jake's upper body functions, bowl regulation, ejactulation ability (very important for a teenage boy)and give him the ability to stand and walk with specialized boots and a walker. His video showed a female teenager with a simliar injury, that has good use of her hands and fingers, and is just learning to walk again. We now have hope, but will wait until, we get back the final word from Dr. Kao. I thanked Dr. Kao, gave him a check for $250 and he left for Orlando. He was with his son and 2 friends, so maybe he is off to see Mickey Mouse, or possibly another patient or two.

    Sincerely:

    Jake's Dad

  3. #23
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    Time length?

    jgiambro -- Did Dr. Kao say there is any length of time which would cause his treatment to be less effective?

    It seems that there are now biological treatments for SCI which have consistent improvement. Did he say WHY your son would wear "special boots?" Is there some limit on what function can be regenerated? Now if Dr. Kao really treats 80 people a year, I would think he would have data to take his treatment protocol through the FDA approval process, NO?

    Something that I found interesting was a post awhile back, where Dr. Kao said that his patient would get "no more improvement" after spinal shock wore off (reflexes had returned.) I'm a year and a half post. I am getting improvement, albeit microscopic. I sit on a stool every day, and record the amount of time I can sit. It get longer every day. I'm T5 complete. When I get good enough in the braces, I'm gonna sell this silly wheelchair.

    Eric Texley

  4. #24
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    Hyperbaric O2?

    Incidentally, have any studies been done on the effect of using Hyperbaric O2 treatments to people immediately post injury? would this help prevent the secondary effects of injury??? i.e. apoptosis, etc.etc.etc

    Eric Texley

  5. #25
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    Carol Bryan and Birde

    CAROL: I'm glad to hear about Traci's progress. I changed my ISP since last we wrote. It's now "OldDrooler@hcnews.com." Also, through your information I finally was able to speak with Dr. Kao. Thank you once again!

    BIRDE: My conversation with Dr. Kao didn't touch on his surgical procedure. In answer to Dr. Young's question, Dr. Kao doesn't seem to use neurotropic growth factors or any regeneration-stimulating agents (such as Inosine, Adenosine, gene therapy, etc.), correct? Also, he appears to not be using precurser cells to repair or replace damaged neurons...is this assumtion also correct? If so, I wonder if his results would reveal less success in treating levels that typically have a high motor neuron density? If so, such an indication may prove to be a factor worth considering before deciding to have this treatment. I believe Massachesetts General Hospital has a website that explains the symptoms of cervical motor neuron damage (myoclonus and spasticity). It would be interesting to ask Dr. Kao what were his results with patients having severe spasticity or clonus prior to surgery. If he has noticed no change in these symptoms, or if these patients have shown less improvement, he may be willing to consider adding a therapeutic element such as autologous stem cells to address neuronal deficits.

    Also, do you know if he removes the glial scar?

    Just a few thoughts

    James Kelly

  6. #26
    Senior Member giambjj's Avatar
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    reply to Eric

    Dr. Kao has not promissed us anything until he sees the new MRI. He claims the high boots work kind of like braches, but more appealing to the eye. He did not mentioned at what time post injury that his therapy will no longet work. I beleive that he has worked on people many years psot injury, but I am not aware of there recovery rate. However, he did see that it could take years before Jake could walk or use his hands naturally. The nerve graft grows very slow. He also said that if a new cure came down the road 5 years from now that can regenerate the injuried cord, that it would work as it did before and this surgery should not keep in from recovering.

  7. #27
    Senior Member mikek's Avatar
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    spasticity and severe tone

    Jim great questions and on the spasticity issue which is my major concern I will be asking Dr. Kao
    when I see him on Monday. I am a T2-3 incomplete
    with 50 % feeling and can move my legs but they are always in a state of contracting with severe stiffness. In 1999 I had a baclofen pump installed and that didn't help with the stiffness at all and had it removed 8 months later. I presently only take about 20 mgs of baclofen orally a day.

    My understanding on schwann cells they create the myelin sheath for the nueron. I have been an incomplete since 1968 and was walking until I had surgery for a tethered cord in 1998. I think I have a severe myelin deficiency.

    Give me any questions, please,

    Mike

  8. #28

    about hyperbaric oxygen therapy and Dr. Kao...

    Here is a response regarding HDO and Dr. Kao's use of it...interesting reading....Dear Lady: (I especially like that part)(LOL!!)

    Thanks very much for your note asking about the use of HDO on Spinal Cord Injury.

    Yes, I do know personally Dr. Carl Kao from Taiwan who lives regularly in Washington, and has been doing surgery to correct problems in Spinal Cord Injury all around the world. He has been using HDO after the surgery with great success to be sure that the transplanted Swan Cells he grows from the patient own cells, will stick and adhere to the original cells in the spinal cord channel.


    A few years ago he bought one of our Hyperbaric Chambers and donated it to his home land University the Taipei Medical College in Taiwan, and took it there and set it up at a brand new hospital the University had set up. I was invited by Dr. Kao to Taipei and remained there for a couple of weeks, to install the equipment and train the people who was going to be on charge of the equipment.


    At that time, he was supposed to perform a couple of Spinal Cord operations in Taiwan, one to a 45 y.o lady who was completely paralyzed since several years ago from a car accident, and a friend medic who had received a gun shot on the back. In that time I suggested Dr. Kao to start HDO before the surgery to prepare the patients in advance and later after the surgery, to keep the HDO treatment, to be absolutely sure of the result of the operation. He accept my suggestion, and started to bring the lady before the surgery, to the Naval and Veteran Chiag Kay Check Hospital, where they had an eight place Dragger Multiplace Chamber. I was able to observe the remarkable effect, on the lady, which after the first four sessions started to move the upper members. In that moment I left Taiwan because I had to go to Stambul in Turkey to set up a couple chambers we had sold too.


    For the case of you, I would strongly suggest to start as soon as you can, to come to a Hyperbaric Chamber to perform as much HDO as you can before the surgery ( not less than five sessions, but if it is possible to do ten, or even better twenty it would be great, and with that you would be able to appreciate the effect of HDO ). The best pressure level of treatment before surgery I would recommend is, 7,5 PSIG ( 1,5 ATA ), that is the best point to stimulate the cells on the Central Nervous System ( CNS ). After the surgery I would suggest to go up to 12 PSIG ( 1,8 ATA ) that is the best point to stimulate the immune system to prevent any infection and speed up the healing process.


    It appears to me from your note, that you live in Ecuador. We have set up four of our chambers in Quito Ecuador. Three of them are directly in Quito, and one is in San Golqui near by. I can not send you right now the complete addresses of the Doctors who own those chambers because recently I had a big problem with my computer due to a virus, and lost all the information on my Hard Drive, but maybe you could look at the telephone book and find them,. One of them is Dr. Freddy Gonzalez and used to have his chamber at his home office in Quito near the Avenida General Chiriboga , but lately he bought a second one and set both of them at a clinic, I understand if my memory do not fail, it is called Clinica Primavera The other Doctor in San Golqui, is Dr. Aguilera, he had moved recently to a new place but still in San Golqui. He has had that chamber for over nine years now, he was the first one in Ecuador to have a Hyperbaric Chamber and perform HDO. The fourth chamber was brought to Quito some six year ago but really I do not know where it is actually now.


    If you want any additional information, please do not hesitate to e mail me, that it would be a pleasure to give you an answer if I can do it. On the mean time I am going to look up if I can be able to pick up again the names and addresses of the chambers in Ecuador to send them to you.


    I hope this information can be of any help to you.

    Respectfully,


    Arturo Martinez Restrepo, M.H.

    < armarlife@hotmail.com >

    (I will have to write him back and explain that I do not live in Ecuador!)

  9. #29
    (James Kelley)- I don't have the answers for you, however, I did forward these questions and concerns of yours to Dr. Kao, I am sure they will be answered as soon as he has the time...I will keep you posted.

  10. #30
    Just finalized everything (almost). I leave August 21 and return September 7. The cost for me - (which flexuates between patients, depending on what needs to be done - i.e. tendon transfer, hardware...) is $28,200.oo. That does not include my airfare, but it includes the price of someone staying with me and their meals, laundry...as well as my own. I realize that I am gonna get some "flack" about having this done, but I am prepaired for that too. I know that this is not the cure, I am not dumb! I have researched this for almost 8-9 months. I've read Kao's book, his papers(although I know they are old), talked to over 100 people (either by phone, in person, or via internet), Many had the procedure, some were told they couldn't have it for one reason or another, some were past collegues of Kao, and so on. While this may not be the road for some, I feel it is the right avenue for me. I am not trying to "cram this down anyones throat", or trying to sell this off as the way to go, or even say it's the best choice. I really admire bilby and the others who chose a differant route!! I will keep you all posted, as I plan on bringing the 'ole laptop along!! I am not gonna tell make believe stories, I'll be quite honest, if no results are seen I will let ya know, if I am worse, I will tell you, if I am better or see good results I will let you know...whatever happens I will let ya know.(;o( Unless I die, than I can't tell ya...attempt at humor

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