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    #16
    I would rather design my own exercise program and spend the the $30k towards one of those new pontaic GTO's.

    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

    Comment


      #17
      I have refrained from commenting in this very good topic because I think that the discussion is very good and did not want to interfere. This site exists so that this kind of discussion can go on. Thank you, Scribe, Jan, Overtheline, and ChrisD, and others for your comments.

      The current situation is potentially a very difficult time for the SCI field, when expectations are high but when effective therapies are not yet available or proven for chronic spinal cord injury. Many people are basing their decisions to undergo experimental therapies out of desperation rather than on credible data. Many people are calling on doctors to take chances and apply experimental therapies to them, often based on little or no data. On the other hand, they severely criticize doctors when they take a chance and the results don't come up to expectation.

      Carl Kao has operated on many patients over the past 20 years, using his experimental procedure of implanting peripheral nerve and omentum graft. I have heard that he has operated on over 500 patients. He has untethered and decompressed people that most neurosurgeons in the United States will not operate on. I believe that he is sincerely convinced that his procedures enhance recovery. It is impossible for anybody to do this kind of work without believing that it is helpful. I also don't think that he is making a lot of money from the operations. His procedure, for example, is substantially cheaper than the Tijuana group that charges as much as $100,000 for shark embryo transplants.

      Although Dr. Kao has done many operations, I have not heard of any catastropic cases that have resulted in marked worsening of function or death. If true, this is an impressive achievement considering his facilities in Ecuador and the fact that he is operating alone on many people with serious spinal cord injury with only an anesthetist, limited nursing support, and lack of backup medical support. Most doctors that I know would not be willing or able to do such complicated cases without the support of a major medical center. Thus, in my opinion, he is a gifted surgeon and passionately committed to helping people with spinal cord injury. I don't believe that he is doing this for money. He could be making a lot more money doing something else.

      I do fault Dr. Kao for not publishing his results. Because he does not publish, there is no way to know how many of his patients have recovered and to what extent. I am not sure that the "vast majority" of his patients have recovered nothing. Many people have written to me about some recovery that they have had. I also know some people who have not recovered anything. The lack of publication is unfortunate because it means that the knowledge that he has gained over the years will not be passed on to others. Even if we assumed that the nerve graft is not effective, his series of cases must be one of the most extensive experience involving decompression and untethering of chronic spinal cord injury.

      It is very easy for a surgeon to stay with what is safe and established. A successful surgeon selects cases for success and can make a very comfortable living doing so. Such a surgeon would have many grateful patients with little risk to his reputation or lifestyle. It is very difficult for a neurosurgeon to act on his or her convictions when they conflict with established views of the field. A surgeon who strays outside of the bounds of accepted practice is not only severely criticized by his or her colleagues but by patients when the results don't come out as expected. I suspect that Dr. Kao does his surgery in Ecuador because he feels that he does not have the freedom to do what he thinks is best for the patients in the United States.

      How does one evaluate a doctor or surgeon who is a loner operating outside of the boundaries of accepted practice? I suggest several common sense rules:

      1. It is important to see if the surgeon is publishing the results. While leading journals often are reluctant to publish work that fall outside of the boundaries of accepted practice, the work can still be published second line journals, in book form, or even on internet.

      2. The results should be verified by third party examiners. For example, Dr. Huang is willing and encourages U.S. doctors to examine his patients before and after operations.

      3. The cost should not be so high that the doctor is doing it for money.

      Finally, of course, you should trust your guts.

      Wise.

      [This message was edited by Wise Young on 11-08-03 at 06:51 AM.]

      Comment


        #18
        Wise, I think your common sense tips are really needed at a time like this. I believe that there will be many different types of surgeries, and many different types of doctors doing them, coming in the future. We have to be cautious, but optimistic, also.

        Buyer beware, but don't let go of Hope.

        -Bob
        Please donate a dollar a day at http://justadollarplease.org.
        Copy and paste this message to the bottom of your signature.

        Thanks!

        Comment


          #19
          Thank's DR. Young.Dr.kao is a gifted surgeon.Going in and out of his surgery was like a drive thru.I just wish there was some change like he said there would be.He doe'snt make much at all for a surgery,and it's great to hear a docter say they can help me.That's part of the reason why i went.I have'nt talked to one docter since i been hurt that think's they can make a difference.And Dr.kao doe's.I liked your post jan.

          Comment


            #20
            Dr. Young,

            Don't know who named you, but that person was
            certainly prophetic.

            If you can dream it..you can
            do it. Walt Disney
            Life isn't about getting thru the storm but learning to dance in the rain.

            Comment


              #21
              It sure does look a little suspect to me with all the meds that Kao recommends after his procedure that could have the effect of making one think their body was functioning better. Some of these Meds he recommends could actually be harmful. Urochrine for the bladder (which makes the bladder more active thereby giving someone the impression their bladder is coming back) could have the effect of creating reflux into the kidneys. Yohimbe Bark (possibly increasing sexual functions) could have adverse Cardio effects, etc. It sure does not seem too responsible to me.

              "Life is about how you
              respond to not only the
              challenges you're dealt but
              the challenges you seek...If
              you have no goals, no
              mountains to climb, your
              soul dies".~Liz Fordred

              [This message was edited by Curtis on 11-07-03 at 06:00 PM.]
              "Life is about how you
              respond to not only the
              challenges you're dealt but
              the challenges you seek...If
              you have no goals, no
              mountains to climb, your
              soul dies".~Liz Fordred

              Comment


                #22
                Just my two cents worth. In early 2002 my sci husband (we're now separated) developed symptoms of syringomyelia. It was terrifying and, and in all my efforts to get him help, I found Dr. Kao (and btw CareCure!). Dr. Kao came to our house, showed us his video, and we were almost convinced to go. Almost.

                We both felt we needed more information. CareCure was especially helpful. Wise referred me to specialists at University of Miami and in Colorado. Dr. Kao didn't appreciate this effort on our part. He used scare tactics to get us to rush into the surgery, tactics that turned out to be manipulative lies. He also showed me on the MRI that Scott's cyst was 4-6 inches long(!) in his cord. Dr. Martinez at UofM showed me that is was actually about the size of an eraser. Slight difference.

                I've continued to receive emails from Dr. Kao's yahoo group. I know Jan is a member too. It's clear that he's done a lot of good for many people, but he has also demonstrated some questionable and seriously suspect behavior in my opinion.

                Wise, I really appreciate the tone of your post, and it has helped me to put Dr. Kao in his proper perspective. But any surgeon, I don't care how "pure" (not for $) his intentions are, his lying and manipulation during one of the scariest times of my life was not appreciated.

                Comment


                  #23
                  A while back, I did a poll on the Kao forum asking whether or not his patients needed the decompression.

                  Although the results were very limited, it appeared all the patients who saw some return needed to be decompressed and all those who didn't need the decompression didn't see any results.

                  That's why I don't think the nerve graph works. I do, however, think Dr. Kao has very good results with his decompression/untethering portion of the surgery.

                  And I agree with Marcomo that some of his actions are suspect.

                  That being said, I'm still glad I had the surgery, as I did need the decompression and untethering. Dr. Kao spent hours and hours untethering my back... it was a mess. We have it all on tape. He is a very good surgeon.

                  Comment


                    #24
                    Thanks for your input, Marcomo. It's stories like yours that should give people pause before they have Kao's procedure. A friend said he told Kao he hadn't gotten anything back. Kao's answer: "You have to give it more time."

                    Again, my main complaint is that Kao told me that I would regain bowel, bladder and sexual function. That's quite a reach. He should not say this unless he can supply documentation that some of his patients have experienced substantial improvement. His promises almost seduced me into having the surgery.

                    I took part in a Kao yahoogroups forum for his patients and those who are considering his procedure. I quit it after an intelligent patient expressed his extreme displeasure with Kao and was jumped on by some others because he wasn't being positive. This is the same guy who had a pressure sore that Kao stitched with thread. The wound became severely infected and the guy spent months in a hospital to heal it.

                    It seems consistent with other testimony about Kao that he blamed lack of progress on those who didn't follow his rigid and time-consuming exercise program.

                    I urge extreme caution to anyone considering his surgery. It's sad that desperate people who have suffered catastrophic injuries should be lured into this without weighing the consequences.

                    As I've told you, Jan, Kao's charm and the possibility of regaining bowel, bladder and sexual function nearly seduced me into having the procedure. He also tried to rush me into the surgery, Marcomo. Deep down, I still desperately want a cure. As a result, I'm still vulnerable to anyone who promises significant recovery.

                    I respect Dr. Young's balanced comments and Jan's reasonable observations that Dr. Kao has some noteworthy surgical skills, including his detethering and decompression procedures.

                    Still, I wouldn't recommend Dr. Kao to anyone.

                    Comment


                      #25
                      i am the guy kao sewed up the pressure on,it was tunneled about 4 cm,all the doctors i have seen since have said that you have to let it heal from the inside out and if you close it,it will reopen like it did.my surgery was 2 years ago,barbara is suppose to visit to review the exercises,have not heard from her,kao is suppose to folllow up,he lives 45 minutes from me,he has not.no gain from surgery,he PROMISED bowel,bladder,sexualfunction after 2 years..nothing..barbara came into my room presssed on my foot for a few minutes and said try to move your toes,they moved from the blood flow,she said look the surgery has worked thats when i knew something was wrong

                      Comment


                        #26
                        You can have unthering and decompression of your cord in the US for free. Why pay $30k for that, or for $20K, you can have it done at the same time with OEGs transplantion in China by Dr. Huang.


                        Thanks:

                        King Tut!
                        Jake's Pop

                        Comment


                          #27
                          When I found out a couple years ago that Barbara was working in conjunction with Dr. Kao, thats when I got real nervous.

                          Anyhow, glad this post was done as it is a good warning for people to make sure to research as carefully as possible before jumping the gun and have a procedure done that may not produce any results.

                          "Life is about how you
                          respond to not only the
                          challenges you're dealt but
                          the challenges you seek...If
                          you have no goals, no
                          mountains to climb, your
                          soul dies".~Liz Fordred

                          [This message was edited by Curtis on 11-10-03 at 02:02 PM.]
                          "Life is about how you
                          respond to not only the
                          challenges you're dealt but
                          the challenges you seek...If
                          you have no goals, no
                          mountains to climb, your
                          soul dies".~Liz Fordred

                          Comment


                            #28
                            Brian! Good to hear from you. I'm so sorry about that sore. Can't believe you're still dealing with that. Dr. Kao impressed me as the type who's extremely enthusiastic and interested in your case BEFORE the surgery, kind of like a car salesman.

                            How are the cats? (Oh, this probably isn't the place to discuss that ... [img]/forum/images/smilies/smile.gif[/img])

                            Curtis, what's the deal w/Barbara? Do you know her? Your comment made me nervous.

                            Comment


                              #29
                              People saying they had no or minimal followup is one reason why I didn't have Kao's surgery.
                              And I disagree that he isn't in it for the money.

                              There's been some good comments on this topic and the discourse has been very intelligent and civil.

                              Comment


                                #30
                                Originally posted by overtheline ...
                                Oh ya,i live about 15 minute's from project walk(escondido)and there like a bunch of whore's working a corner in carlsbad.Everything is about money there,my mom and girlfriend went in there again last week and all they talked about is money.I guess one of the therapy's there now is showing poeple how to right a check.They showed a bunch of surfer kid's how to exercise poeple for 3 hour's while they go to the bank and then club med for happy hour......whatever....they where nice though
                                Thanks for the uncalled for flame.....

                                Not sure how to respond to the "whore" label... Are we out soliciting customers on the street or through ads in the newspapers? Do we walk up to people in wheelchairs and ask them if they would like a little exercise tonight?

                                "Everything is about money.." We are just like any other business and it takes money to run a business. Unfortunately no benefactor has offered to pay our rent, salaries, health insurance, Califorina's outrageous worker's compensation insurance, etc. so we can supply our services for free to all comers.

                                "They showed a bunch of surfer kid's how to exercise people..." This is obviously a derogatory statement implying that surfers are stupid. Well, we do operate this business in San Diego, so a high percentage of the employees DO surf. In California being a surfer is a positive thing, it allows you to relax and relieve stress. ALL of our Specialists have a college degree and a few have master's degrees. 99% of them are in kinesiology, exercise physiology or a related field.

                                Here is an overview of the kinesiology major

                                Here you can browse through the required courses

                                "...they were nice though..." HEY...a positive statement issues forth.

                                Thanks.

                                [img]/forum/images/smilies/smile.gif[/img] [img]/forum/images/smilies/cool.gif[/img] [img]/forum/images/smilies/smile.gif[/img]

                                Eric Harness,CSCS
                                Project Walkâ„¢

                                [This message was edited by Snowman on 11-12-03 at 10:57 PM.]


                                Eric Harness, CSCS
                                Founder/President
                                Neuro Ex, Inc
                                Adaptive Performance and Neuro Recovery

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