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Thread: meeting with Carl C. Kao

  1. #1

    meeting with Carl C. Kao

    Dr. Young, we met with Dr. Kao today (a day earlier than what was
    planned). He came to our home with his nurse who travels with him
    to Ecuador. He stayed almost 3 hours. He had us view a video,
    which he left for us, and explained the video quite well. His
    examination was thorough, gentle, and quite professional. He says
    that I am T10-incomplete as I have voluntary muscle movement below
    the injury. He said that is good. Now for your questions- "
    please say hello to Dr. Kao from me. I have not seen him in 10
    or so years." Dr. Kao smiled and sort of chuckled and said "oh yes
    Dr. Young, how is it you should know him?" I explained through and he wrote it down and said he wants to check into
    this!! He said to say "hello". "If I were you, I would ask him
    whether my spinal cord
    is compressed or tethered." COMPRESSED is what he said. "If so,
    I would ask him what experience
    that he has had with functional recovery resulting from decompressing
    or untethering such spinal cords." part of his response was this" in
    1983 he concentrated exclusivly on the care of SCI patients.
    Recognizing that a reduced and fused spine after
    fracture-dislocation was the fundamental condition for any spinal
    cord reconstruction, he began to perform a wide variety of surgeries
    for spinal fusion. He was exposed to Roy-Camille's, Dick's and
    Zielke's fusion techniques which he preferd to Harrington's. With a
    good reduction and a solid fusion of the spine, he began to perform
    a meticulous posterior and anterior decompression including
    microsurgical neurolysis and wide watertight dural graft. He began
    this procedure at the lumbar areas to decompress the cauda equina
    and found that the result was quite encouraging. He began to
    operate on the thoracic levels, this time with a variety of
    reconstructive procedures for the nerve roots and the spinal cord
    using sural nerves. Positive results were obtained in "well
    selected cases", although it was!
    still limited. With the aid of
    below the knee boots for ambulation, as well as special physical
    therepy technique using the Elgin table to improve the strength of
    the recovered muscles, he reported the first 90 consecutive cases at
    the 8th International Congress of Neurological Surgeons in
    Toronto...he has had many more since that time (1985) and is in the
    process of writing another book with his work, findings, success and
    failures. "I would ask him to describe in
    detail the therapies that he may be proposing to do, including cells
    or peripheral nerves that might be transplanted, omentum transplants,
    growth factors, and any other experimental treatments." He plans to
    A.) remove my rods and pins( and later re-insert them) to cut
    down(away) the T10 vert. in order to straighten my spine the proper
    way, B.) take sural nerves from my leg(S) and transplant that to the
    1 1/2 inch "gap" in the cord, C.) take schwan cells from another
    part of the leg(s) and transplant that to both ends of where the
    spinal cord meets with the sural nerve D.)take a free, unattached
    piece of omental tissue and surgically place it over the injured
    cord and connect it to a surrounding vascular source E.) 2 wks. of hyperbaric o2
    therapy for 2 1/2 hrs. a day, full bed rest as well. He also said
    that I will get 4AP - after words- I will start that in the states.
    I was impressed with him over all. We talked a great deal about
    Mellisa Holley-Israel, Cheng-Taiwan, as well as others......Birde

  2. #2
    Do you know if this procedure has been tried on people who have already regained some walking ability? Is there some way I can get in touch with Dr. kao to discuss this?

    Most of the stories i hear are concerning para's or quads that had little to no movement below thier injury level. I would think that it could be quite benificial to walking quads also, but maybe those of us have already regained as much as possible.

    Are there any walking quads out there who can shed some light on this?
    Carl Champion,
    C-7 incomplete, walking quad

  3. #3

    How to contact Carl Kao

    Dr. Carl C. Kao 3801 Connecticut Ave., N.W., Suite 100 Washington D.C. 20008 PHONE:202-362-6421 FAX:301-388-0994

  4. #4
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    That's really interesting, Birde. Yale had a news release go out this morning about their first transplant of sural nerve cells to the lesions of a MS patient in her brain. Their research is funded by The Myelin Poject but is defintely something to keep a close eye on for those of us with SCI, TM and the leukodystophies. It was a long time coming but that Dr Kao uses this material too is cool. Good luck which ever way you decide!

  5. #5
    Senior Member rdf's Avatar
    Join Date
    Jul 2001
    Someplace between Nowhere and Goodbye
    Good luck, birde. Sounds like it is something you should consider very seriously. From what you say, he sounds sincere and knowledgeable.

  6. #6
    Senior Member
    Join Date
    Jul 2001
    Chicagoland area

    A reply to Carl C.

    Hi Carl.

    As A c-7 incomplete walking quad post 9 years, I am personally waiting to at least try 4-ap when it hits the phase 3 study here in Chicago, hopefully freakin soon. I personally would not risk the LOSS of function , cost, no guarantees ,and still no concrete proof of amazing recoveries.

    Being so close to the AB world yet so far, I am as anxious as you are to improve even more. But we are still in early stages of human trials, a little more patience and we will get there.

  7. #7
    Senior Member mikek's Avatar
    Join Date
    Jul 2001
    Pompano Bch.,Fl. 33060
    Thanks Birde for the information. Dr. Kao will
    be in So. Fl and is seeing me Aug 1. He says he is seeing others as well, if so let's compare notes and pro's and con's of our meetings.


  8. #8
    Carl C., I don't know how many sci patients Dr. kao has worked with/on that already had ambulatory function. I do know from his published reports that he has indeed done sural nerve grafts of disrupted cauda equina on some who were ambulatory before the surgery. He claims to have had good results. He reported that in Toronto at the 8th annual congress of neurological surgery. Dr. Kao says that "at present different opinions exsist among physicians on the management of thoracolumbar injury with paraplegia. Statistics show, during the acute stage, 66% improvement by laminectomy, 61% improvement by spinal fusion and 64% improvement after postural reduction without surgery. It is possible that the data of approx. 60% improvement simply reflect the natural recovery from the injury rather than the result of a treatment. In contast, if a treatment is tested on the cronic, well established spinal cord injuries, any further neurological improvement can be claimed as being the result of the treatment. The experiance from cronic injuries is therefore more conclusive than from the acute cases, and may in turn become helpful in the management of the latter."

  9. #9
    Junior Member
    Join Date
    Jul 2001
    Oakland, CA USA

    Dr. Kao

    Does anyone know if Dr. Kao had any c level ( like c6/7 complete) patients benefit from his treatment ? Do those patients gain any bladder or bowel control or able to walk again after the surgery in the past years ? It seems that his treatment is more beneficial to the T level or lower level patient.

  10. #10
    et, again, I am not sure how many success stories he has with cervical injuries. I did ask Dr. Kao while he was here: what area have you seen the best results in, regarding your work? (i.e. cervical, thoracic, or lumbar) His answer was mid/lower thoracic. But he said that may have to do with the fact that he sees and treats more at that level. You may want to fax him that question, or call and speak to him, he is patient and kind and really seems to want to extend help to sci individuals. He has published in the past regarding this question. In 1993 (Acapulco, Mexico-World Fed. of Neurosurgical Societies) He wrote " the best result is seen among lower thoracic and upper lumbar cases, followed by upper thoracic, and the cervical cases resulted in the worst outcomes". Keep in mind that was 1993, he may have seen different results since that time.

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