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  • #31
    good luck. . .

    Keep us posted and thanks for all the information. As I posted on the other forums, someone once told me you make your own luck and defined it as " where talent and opportunity come together ".

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    • #32
      Kao's procedure in US?

      Why has no hospital IRB tried to adopt this procdure that Dr. Kao does in the United States? What would be the route which it would have to take to become an approved therapy? If the procedure changes or improves, what would have to be done to integrate these changes? Apparently he has treated more than 500 people with his procedure. As many people here mentioned, he restores function through the quads and hamstrings. Dr. Young??? How could this procedure be refined to resture function completely????

      Eric Texley
      Eric Texley

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      • #33
        I want and hope for anyone who undergoes Dr. Kao's surgery to recover. My only question has been and continues to be is if there have been 500 or so patients (80 per year roughly)who have had this surgery then why hasn't there been more attention paid to this? why aren't former patients shouting from the rooftops about their recovery? If it worked there would be other doctors doing it, right?

        A doctor once told me to never rely on a doctor's pitch for any type of surgery. Get a second or third opinion and more importantly talk to former patients and get their testimonials.

        I guess, in relation to Dr. Kao's pitch, I would like to hear from 50 or so patients (10%)(medical records, etc.)about their specific function / recovery before and after.

        We all want it to work but are we making this decision logically or out of desperation? Or is the expectation that if I get anything back (minimal function) that it is worth it? Does anyone else echo these same thoughts, considerations?

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        • #34
          I admire

          those who are willing to take the risk and go forward with experimental treatments. I am somewhat skeptical of Dr.Kao's work for the simple fact that he has not published results.

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          • #35
            ????

            I don't know about publications. I do know he co-authored a book with Richard Bunge "Spinal Cord Reconstruction" which detailed repair techniques which they used on more than 250 dogs...I would assume that he might publish abroad.

            As far as "experimental," I think that Dr. Kao is probably clinical, NOT experimental. He has treated more than 500 patients...! And he can very reliably predict how much recovery they will get. As far as "hearing about him" if he is doing 80 surgeries a YEAR, I don't think he needs any more business than he already has.

            Also, it is my understanding that he did some treatments at Georgetown. But the patients insurances wouldn't cover it. And it amounted to like $150000.

            Eric Texley
            Eric Texley

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            • #36
              Eric

              Carl Kao use to do animal experiments and he was very good. Yes, he did co-author a book in 1980 about reconstructing the spinal cord. I went to that meeting and met him in Las Vegas, 1979. I am not sure what happened at Georgetown but he had gotten into a disagreement with the university because he was transplanting peripheral nerves into the spinal cord of patients there.

              Wise.

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              • #37
                Years ago, Dr. Kao was disciplined in the state of Washington and was, I believe, prohibited from doing further operations there. He was apparently trying to find a place in the United States to do his operations. You can contact the state authorities in Washington and they will send you the papers on his disciplinary action along with an exact description of the procedure he did. I read the papers, but much of it was in medical jargon I did not understand.

                I have met Dr. Kao and found him to be very personable and likeable and seemed very sincere to me. I think he probably moved his operations to other countries because they are not approved for spinal repair in the United States. I decided not to have his operations because of lack of scientific evidence that there would be any improvement. I know some people got a little better and regained some level of functions, but others have not improved at all. Whether improvement came from nerve regeneration or decompression of the cord, I don't know. I speculate it came from decompression because in all cases of improvement, I believe, improvement has been quit limited.

                Dr. Kao is somewhat of a maverick in going against scientific protocol. I don't know if this is good or bad, but he obviously believes in what he is doing and has brought improvement to some people.

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                • #38
                  reply to Chris, and the rest of you

                  "A doctor once told me to never rely on a doctor's pitch for any type of surgery. Get a second or third opinion and more importantly talk to former patients and get their testimonials." Those are wise words, I wish I had taken that advice at the time of my injury, the hospital and doctor(s) really did a number on me. Again 3 months after that at the second hospital, I wish I had gone and got some more testimonials...as the same sort of thing happened yet again! Now 3 doctors besides Kao say (all agree) that I need to have another operation to straighten the spine or I will be a slumped over hunchback the rest of my life.

                  "I guess, in relation to Dr. Kao's pitch, I would like to hear from 50 or so patients (10%)(medical records, etc.)about their specific function / recovery before and after." Again I will say that I spoke to well over 100 past patients of Kao's, and some did go to the local papers and sing praises of Kao...it is not the fault of the patients or of Kao's that the press does not do a better job with the reporting of the story! I spoke to these patients well before I ever spoke to Kao! In some cases I went back, after meeting with Kao, and talked to these people again. It's important to understand that Kao does not travel the world to pitch his procedure! He is not some traveling side show faith healer! I went to him.

                  "We all want it to work but are we making this decision logically or out of desperation? Or is the expectation that if I get anything back (minimal function) that it is worth it? Does anyone else echo these same thoughts, considerations? " Many echo the same thoughts and considerations as you! In fact, it is my opinion that is why the is no cure to date or very many therapies in regards to SCI! For years we have been told the cure is near, 5-10 years away! They have been saying that for 15 years! Little did we know that 5-10 years meant add the two numbers (which is 15) and multiply that by forever! WAKE UP!! The cure is not going to knock on your door! We are taught from the onset of our injury to live with it! We are told to make friends with the wc. We are taught ways to survive with our disability. We are taught to be productive cripples! Nothing is offered! When you have cancer or aids, or and organ failure...you are given drugs, radiation, trials are in place, things are offered and they are not told to "live with it, things could be worse". SCI people are! We do not demand a cure or therapies. Everyone else does! I am not going to sit in this chair and accept the life sentance that was given to me. The cure is out there. Just because the U.S. is not on top of it, does not mean that there is nothing that we can try or look into. LOOK AROUND PEOPLE...Taiwan, Russia, Ecuador, Israel... the U.S. is lagging, what they try has and is being tried already in other countries. "monkey-see-monkey-do". I have done my homework, talked to the right people, read the book(s), read the papers...I am ready to try this, if you don't think it's worth it, PLEASE DON"T TRY IT! But, don't you put me or anyone else down who are willing to try something other than sit and accept the life sentance that was handed down to us! DON'T YOU DARE!

                  [img]/forum/images/smilies/mad.gif[/img] BTW...Kao can and does operate in the U.S. and did so recently for a SCI individual in Chicago. He can not do the regeneration procedures here in the U.S., no one can, unless it is part of a tightly controlled trial. NEWS FLASH-there ain't too much of that happening in the U.S. in regards to SCI!!!! [img]/forum/images/smilies/rolleyes.gif[/img]

                  [This message was edited by Birde on August 02, 2001 at 10:44 AM.]

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                  • #39
                    so bill,so the majority of these poeple that you talked to that had his surgery had little to know return?you and birde are talking to different dirrections about this surgery

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                    • #40
                      ...

                      I'll tell you all something....note that Melissa Holley is ambulating in KAFOs now, regardless of the fact she has leg extension. Kao has quads many years post injury in what is the equivelant of an AFO.

                      I don't consider bowel, bladder, and sexual function "minimal."

                      He has a procedure that DOES work. And he is quite clearly clinical, NOT experimental given the number of patients he has worked with with success.

                      Eric Texley
                      Eric Texley

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                      • #41
                        Birde, As I mentioned earlier, I have nothing but respect for your decision and believe you are very brave to undergo Dr Kao's treatment.

                        And while I am skeptical, I do plan on having Dr Kao come and visit me to get his opinion of my injury. Thanks for all of your research.

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                        • #42
                          for a injury not to high and under three inches not severed,are the majority of theses poeple at least getting back there bowel,blatter,and sexual fuctions?the feeling of these things?that alone would be incrediable step forward

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                          • #43
                            Easy birde,

                            birde, nobody is putting down your decision. Lighten up. Like I said in the beginning of my post. I hope you get as much return as you hope for.

                            I think we're all awake enough to recognize that there are other options, Russia, Taiwan etc. My point was birde that to date none of these therapies clinical or experimental has worked conclusively and consistently and therefore my question of basically is it worth the risk? You think it is. Good luck. But get off your attitude that the rest of us are just sitting around waiting for something that in your mind isn't going to "knock on our door".

                            Some of us analyze these decisions differently and you shouldn't condemn us for it. Also, just because we're not as emotionally charged as your posts often reflect doesn't mean we care any less or don't want a cure as bad as you do.

                            My apologies for showing any skepticism in Dr. Kao or your research. Looking forward though to your honest assessment of whether or not you improve.

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                            • #44
                              lack of publications??? NOT

                              you know, with a little work on a search engine, i don't see how ANYONE can claim a LACK of publications for Dr. Kao. In his cirriculum vitae ALONE he has nearly 100 publications. There are MANY MANY MANY pages of hits when you type in kao and sural nerve graft..etc.etc.etc. given his work with subjects, this guy has probably done more for our progress towards a cure than anyone ALIVE.

                              Eric Texley
                              Eric Texley

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                              • #45
                                My skepticism is that the articles have not been published in medical journals for peer review.

                                Who knows though, the good doctor may be just way ahead his time.

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