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Thread: meeting with Carl C. Kao

  1. #131
    Senior Member mk99's Avatar
    Join Date
    Jul 2001
    toronto, canada


    Burde: What was Dr. Kao's opinion of Dr. Cheng (who is also Taiwanese just like Dr. Kao)?

    What were his thoughts also on Russia?

    I wonder how Cheng's procedure is different than Kao's? (No omentum in Cheng's Case... not sure about Nerve Growth Factors & Fibrin in Kao's).

    Can you enlighten us on what Dr. Kao thought?

  2. #132
    Well, I will tread very carefuly this time in regards to saying or posting or relaying messages about others. When I asked Dr. Kao about his thoughts in regards to Dr. Cheng's work in Tiawan, his replied that he was very interested in it and does speak regularly to Dr. Cheng and is extremly interested in his growth factor "nerve glue". He said something about a paper of Chengs coming or due to come out soon (perhaps he said November?) Anyway, once he meets with Cheng in Tiawan and has a chance to go over the study he will decide if this is something that perhaps might be of an added bennefit to his patients that have had his procedure in Ecuador. As far as Russia, he said that he is not really that in touch with their work at this time. Dr. Kao said he is schedualed to leave Ecuador around the 16th of September and head to Italy, Tiawan, and back to Washington for a few days and back to Ecuador. He said that he has aprox. 300-400 patients on a waiting list. While in Ecuador he received countless calls at the clinic that he was paiged for and asked that messages be taken. Perhaps if you would like some kind of proof or something more than "here-say" about Kao's work, you (any of you) should pick up the phone and make calls to past patients, ask them if you could meet them face to face, we did. We met with at least 50 before we went and talked with countless others. Interesting that no one says that they would not go through it again. There is one here in Wisconsin that can walk without the Italian boots or the walker, and two others from other states. Before we left for Ecuador we spoke to a man from Navarino, WI who was not walking with his boots or walker yet and we are home and he now is begining to. They are not dragging themselves or supporting themselves with the arms rather their legs are supporting them. They don't all hike their hips, in fact most re-learn to lift and bend each knee and place one leg in front of the other. This is not handed over by Kao through the operation, it takes a year at the least if not many years to re-gain this and very hard dedicated work. Jim stood with the boots on with the help of the walker, it took 3 men to assist to get him up...but think about it, this happened only 1 1/2 wks after a major operation!!! Once he was up from his wc, at the walker, he stood by himself, no one assisting him for at least 10 minutes. His arms were not bearing the weight, he did get a bit wobbly at times...but it is on video. He feels better than he has in a year-since the accident. He has had 3 bowel movements since the operation and rather than 1/2 hour to 45 minutes it took 10 minutes each time and he was able to "push" it out. He has abdom. muscles and thigh muscle movement that is noticable (can flex on demand). His toes move on each foot with concentration and determination. He is able to (with left leg only) push. If you put your hand under his foot he can push it and make you feel the pressure. The level has lowered as far as sensation to about an inch below his belly button. The scars on his legs and abdom. are heeling very well!!! His back scar looks better than it ever did. He starts the bladder meds. in fact the cost is not $300 per month but $600 per month. Just for one of the prescriptions!! He starts the other drugs at the end of this month, including 4AP. He is on total bedrest until the 21rst as is everyone. Two wks. resume normal activities.

  3. #133
    Originally posted by BirdeR:

    Perhaps if you would like some kind of proof or something more than "here-say" about Kao's work, you (any of you) should pick up the phone and make calls to past patients, ask them if you could meet them face to face, we did. We met with at least 50 before we went and talked with countless others.
    Since you have already done this work, why not put together a small report based on your 50 + interviews and post it here. It would be appreciated. The report should contain at least the following data. No names needed.

    1. person (sex, age)

    2. level/type of injury

    3. x months post injury

    4. x months post surgery

    5. possible benefit from surgery

    6. possible side effects

  4. #134
    DETAILS ON JIM'S SURGERY-FRIDAY, AUGUST 24 (12HOURS) 1) removal of existing bone stimulater, rods, hooks, and screws from back. 2) laminectomy T6-T12 inclusive total 7 levels. 3) transpedicle anterior vertebretomy to remove bone compression in front of spinal cord until flat at T10 level. 4) bilateral forminotomy at T10 to decompress the nerve roots. 5) bilateral lateral gutter bone fusion. 6) microsurgical intradural release of arachnoid adhesions and evacuation of spinal cord cavity 4.5 cm. long at T7-T10 levels. 7) implantation of 15 fascicles of sural nerve together with dissociated Schwann cells into spinal cord cavity. 8) closure of pia over the implants with 7-0 Prolene thus retain the implants within the spinal cord. 9) suture fixation of a piece of omentum to the spinal cord and both sides of dura. 10) dural graft autologous fascia lata. 11) Jim completed (as do all the patients) 13 hyperbaric oxygen therapy sessions following the surgery each lasted 2.5 hours each. (1 session per day). ************************************************** *********** MEDICATIONS THAT JIM IS ON OR WILL BE ON: 1) Proviron, (testosterone) 2 tabs. before breakfast each day for 6 months. 2) Yohimbine 5.4 mg., 2 tabs. before sleep at night each day for 1 year. 3) Viagra 100mg., 1 tab. as needed 4) Urecholine 25 mg., 1 tab 3x a day before meals for aprox. 6-8 months. 5) Dibenzylene 10 mg., 1 tab. 3x a day before meals for aprox. 6-8 months. 6) 4-AP from Mr. Greg Dent who will decide along with Dr. Kao on the exact dosage. ************************************************** ***********JIMS BEGINING EXERCISE PROGRAM 1) begining 9/8: continue range of motion exercises at least 2x a day every day on both legs (as shown to us). 2) begining 9/14: begin to stand in standing frame/table (as was shown to us) 1hr. in AM and 1 hr. in PM. (at least). 3) begining 9/21: begin iliopsoas exercises , (with equipment shown to us), against 35-40 lbs. weight (as shown to us). Start at 1hr. a day (1/2 hr. per leg). May work up from that. 4) begining 9/28: begin leg exercises in face up position, (with equipment shown to us), against 30lbs. weight (to start) (as shown to us). 2 hours a day (1 hr. per leg). May work up from that.

  5. #135

    stuck in Ecuador

    There are 3 American families (each with a patient) that are now stuck in Ecuador because of the kaos going on here in the U.S.. As well as Dr. Kao and Barbra DeVine. I just phoned them and they are aware of the problems here. Jake was schedualed to leave tomorrow with his mom and 2 others with him. As of now, they are not allowed to leave as schedualed. Very nerve racking to say the least!!! Please pray for their safe and quick return to the U.S.!!!!!

  6. #136

    This whole thing with the terrorism is a nighmare come true

    I was Just saying to my Lawyer in talking to him friday that I could smell something like this in the air with all the problems going on in the middle east that it would only be a matter of time before it came to this country.

    This event I believe will change how we have grown accustom to taking our freedom for granted in this country. It is real scary stuff. A lot of lives were lost today. No telling how long it will take for things to get back on schedule again with all kinds of schedules including Air travel, I wish Jake and the others a safe trip soon back to this country. I am sick over this whole thing. Lets pray that not as many lives were lost today as it looks like at this point.

  7. #137
    Senior Member giambjj's Avatar
    Join Date
    Jul 2001
    Auburn, AL,USA



    Thanks for keeping everyone abreast of things there. I suspect it will be safer that they all stay there until things calm down. The patients can spend some more time in the chamber and trying to stand. I on-the-other hand am scheduled to go Cairo through New York on saturday. I may cancel that meeting until Jake is home and flying is safer. Please pray for the families, who have lost love ones in this latest terrorist attach.



  8. #138
    Senior Member rdf's Avatar
    Join Date
    Jul 2001
    Someplace between Nowhere and Goodbye
    You perpetrated a deception, birde, jim, and robin. You went far beyond what was needed to "hide" your identity. You used one username to cover the thoughts, emotions, feelings of two people, male and female. No matter what everybody else feels, what you did was pure bullshit, plain and simple. All you had to do was be truthful about your gender(s), at least. There are a myriad of ways to hide your identity without using and taking advantage of other people's kindess, advice, and sympathy.

    You should be ashamed of yourselves, many people, including myself, gave you their heartfelt emotions in order to help a woman with an sci, just to find out it was all bullshit. Shame on you, all three of ya. In your own immortal words, "People are selfish and nonchalant when it comes to other individuals....that I (we) supose is just plain human nature. I (we) are not, nor did I (we) ever, trying to "pull the wool" over anyones eyes." You did exactly that.

    This whole "protect your privacy" story that you post could very well be just that, a story made up to cover your deceitful, shameful actions, something you took 3 or 4 days to think up. Then again, I might not be me, right? So, forgive whoever is posting this if I touch a nerve.

    When you elicit advice and sympathy from another person under a guise such as you used, and when you are so public about your sci surgery that you broadcast it making many people consider the same, then you are somewhat accountable, and there has to be some semblance of truth to your identity, at least your gender and actual injury level, etc., for the very reasons SueP mentioned.

    I don't care what everybody else thinks, they can think what they want, and from what has been posted they buy your story hook, line and sinker. Good for them, I'm not so gullible, and when I give a "girl" advice on her injury that she accepts, I like to think I'm actually talking to a girl with an sci. Not the fraud that was you, robin and jim. Period.

    Good luck with your recovery, I truly wish that one of you gets better because having an sci is a true horror that nobody can know except those who live it every day and night, in reality and not through the vicarious postings of another. Of course, we have no idea if there even is a jim, a robin, or a birde, for that matter.

    It could very well be ron who is posting, or some other wingnut. And that is certainly a possibility, only made allowable if everybody denies their own identity because they like to play games on the internet. Let me reiterate, there are many, many ways to hide your identity other than what you did, what you did turned into a game. You had plenty of chances to be truthful, either via email to those you spoke to, or on spw itself, without losing your anonymity.

    There comes a time when one bears their souls and wears their emotions of their sleeves that there has to be some accountability, and truth. You can use the privacy excuse as much as you want, but the depth that members of this board go through to help each other, the way they suffer every day and report that suffering on here, the many indignities they put up with each and every day which they share with others suffering the same way....., well, they expect and deserve the truth to the extent that it can be given, which entails being truthful about your gender and injury level, and not have them divided up between two entities.

    Again, I might not be me posting this, ok?? I just don't wany any other spinal cord injured people in my small town to know I have an sci. I haven't been outside in 15 goddamn years. I might not even be the same rdf from spw, or cando, right? Right???

    "the reason that a female was injured was in fact my husbands (not boyfriends) post or idea to try and keep the local SCI individuals in our community from catching on to who he (we) were/are ...."

    And you say you won't apologize for that? Shame on you.

    Good luck with your recovery nonetheless. If you are actually an injured person, then try to stay healthy and don't overdo it, and make sure you rehab rehab rehab, because that is the secret to teaching your body how to do it all again.

  9. #139
    You are causing me to think, I need to "mull" this over.


  10. #140 If you follow Ed Paiges webpage you can see and check the stories and pictures they have and you will find not only myself(Jim) but also a picture of myself and Robin as well as many of the other patients that had this operation this time around...we are not make believe, and I really am spinal cord injured and those posts really were my feelings, not Robins....MINE! We never insulted people or hurt people on this forum, in fact we took as much verbal abuse and or tongue lashings as anyone! Now, I am suposed to ask you for forgivness because I am a man with sci and not a woman with sci......FINE!! I am so sorry that I am not a woman that I led you to believe that I was. HAPPY? I didn't think so, what the hell is the big deal? The big deal for me is that you all know who I am and I have not a clue who you are! I have a spinal cord injury as many of you do...and because of a misunderstanding and an error of judgement on my part, you all think and say that I am an insult to the sci community...FINE! Do I demand the truths from you before posting and supporting any of you? Do I post that you are all self absorbed and shallow minded? Do I insult you on a public forum? No.

    [This message was edited by birdeJ on September 12, 2001 at 10:43 AM.]

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