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Thread: meeting with Carl C. Kao

  1. #201
    Gosh, I don't want to speak for Greg and/or Dr. Kao in case I get something wrong...my understanding is/was that the bullet did not hit/touch the spinal cord. If I understand what happened...the bullet came close and the heat and vibration caused the cord to...cave in...become compressed...pinched off. I don't think Greg ever had any hardware or back stabalization surgery. I think they removed the bullet and so forth. I think that Dr. Kao was the first to do any type of operation on his back/spinal cord. Dr. Kao did a decompression procedure on Greg. I will have to ask him or Dr. Kao more specificly what exactly happened to the cord when the bullet went in.

  2. #202
    I'am leaving on nov 20 for ecuador,my surgery is on the nov 23.I'am just getting cold feet about this even though i asked dr.kao all the questions i wanted to know.He said he really feels there is know reason i can't get feeling down to my knee's back,doe's he tell everyone that he can do that?my injury is about a inch long,and i'am 2yrs post as of last week(t-7 complete)does that make a huge difference on the length of your injury?just to get back my blatter and bowel would be incrediable.Will that feeling really be the same?I guess at this point i'am willing to try anything and that's why i'am hoping i'am not just jumping in the dark.My brother and mom are going with me,my mom knows spanish very well so i figure that will help alot.Has anything changed on any of the poeple that went down in august?how long did he tell everyone that he has talked to or had this surgery done that it would take to get a change?i know it will take alot of work on my part and i'am more then willing.Thanks jeff pike

  3. #203

    update

    first of all-we want to wish overtheline3 and everyone else a safe trip to Ecuador and let you all know that our thoughts and prayers are with you during this journey.- Now with that said here is an update on Jim. Although it is still too soon to see or know all the results from having this procedure we are still seeing and/or experiancing good things. We are not sure if these are from the decompression, the nerve transplant, the 4AP, or just "spontanious" recovery. Jim continues to do his exercises and so on, he is up to 50mg. a day of the 4AP, he has not taken the viagra or yohimbine as of yet, he is taking the Proviron (testosterone)-2 tablets before breakfast every day, the Urecholine(25 mg.)(1 tablet 3x a day), and the Dibenzylene(10 mg.) (1 tablet 3x a day). Jim is not taking any pain meds. at this time and has not for about a month. Before the operation he was taking a ton of pain meds. Jim has started his bladder exercises and before he caths he gets on the toilet and applys pressure to the abdomin area and trys to urinate without cathing. He is able to urinate some by doing this (almost every time). He still needs to cath afterwords to make sure that it's emptied. He usually only gets about 50cc-100cc out after this...where he used to get 200-350cc. He is able to get an erection and maintain it and has ejaculated on 3 occassions...very exciting. He used to get spontanious erections that never lasted, now he can get an erection by stimulation. He gets sensations in his legs...but these sensations come and go. He is able to regulate his body temp. much better now. His knees lock into place when he trys to transfer. At night when he is sleeping his legs seem to move up and down...let me try and explain...one leg comes up(with knee bent) while the other is flat, then that bent one goes down and the other comes up with knee bent and the otheris flat...it's kind of funny because they do this over and over again up down up down...he is oblivious to this. Not sure what to make of this. All in all he is doing well. He is back on the heavy equipment (i.e. bulldozer, tractor, back ho) and just got a new 4 wheeler that he rides all over. Nothing too exciting, but we are encouraged all the same.

  4. #204
    just curious, why is he taking testosterone?

  5. #205
    Birdie, thanks again for the long conversation we had over the phone last month. It was so helpful...you gave me some great insight into the whole Ecuador experience. I didn't realize then that you were Birdie on CareCure. It seems to me that some people on the forum go beyond skeptical of Dr. Kao and are slightly offensive. I think maybe they struggle with their own decision Not to have the surgery and feel a need to confirm/justify that decision. Thank you so much for all the information you have shared...I'm certain there are many more who quietly go on their way, leaving us in the dark. I wish the very best for you and your family. From what you've told me about Jim, if anyone can recover function from this surgery, it will be him.

    Jan

  6. #206

    Glad that Jim is doing ok and back to normal again after the Operation

    I really get the feeling though that a lot of people who have had this operation are trying to justify that it was worth doing when in fact very little has changed from what they were before. I am a t-4 complete post 20 years and can do everyone of the things that you mentioned Robin, so would I spend all kinds of money and time and take such a large risk of doing my body more harm from such an Operation, the answer is a most definate No!!!

    When something comes along that is proven to work, you better believe, I will be one of the first people in line (I would be a great candidate as not many t-4 Paras are in the kind of shape I am with all the training I do) But until that time, I think I will try and stay healthy and enjoy life as much as possible and not risk putting myself in harms way.

    "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

  7. #207
    Junior Member
    Join Date
    Sep 2001
    Location
    Broken Arrow, OK 74012
    Posts
    8

    JIM

    Originally posted by BirdeR:

    first of all-we want to wish overtheline3 and everyone else a safe trip to Ecuador and let you all know that our thoughts and prayers are with you during this journey.- Now with that said here is an update on Jim. Although it is still too soon to see or know all the results from having this procedure we are still seeing and/or experiancing good things. We are not sure if these are from the decompression, the nerve transplant, the 4AP, or just "spontanious" recovery. Jim continues to do his exercises and so on, he is up to 50mg. a day of the 4AP, he has not taken the viagra or yohimbine as of yet, he is taking the Proviron (testosterone)-2 tablets before breakfast every day, the Urecholine(25 mg.)(1 tablet 3x a day), and the Dibenzylene(10 mg.) (1 tablet 3x a day). Jim is not taking any pain meds. at this time and has not for about a month. Before the operation he was taking a ton of pain meds. Jim has started his bladder exercises and before he caths he gets on the toilet and applys pressure to the abdomin area and trys to urinate without cathing. He is able to urinate some by doing this (almost every time). He still needs to cath afterwords to make sure that it's emptied. He usually only gets about 50cc-100cc out after this...where he used to get 200-350cc. He is able to get an erection and maintain it and has ejaculated on 3 occassions...very exciting. He used to get spontanious erections that never lasted, now he can get an erection by stimulation. He gets sensations in his legs...but these sensations come and go. He is able to regulate his body temp. much better now. His knees lock into place when he trys to transfer. At night when he is sleeping his legs seem to move up and down...let me try and explain...one leg comes up(with knee bent) while the other is flat, then that bent one goes down and the other comes up with knee bent and the otheris flat...it's kind of funny because they do this over and over again up down up down...he is oblivious to this. Not sure what to make of this. All in all he is doing well. He is back on the heavy equipment (i.e. bulldozer, tractor, back ho) and just got a new 4 wheeler that he rides all over. Nothing too exciting, but we are encouraged all the same.
    Thank you for the info on Jim, glad he is better.
    Keep us up to date with his progress.
    KEEP UP THE GOOD WORK JIM

  8. #208

    maybe if you want something to work bad enough it will happen right?

    Is that possible?

    "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

  9. #209

    4AP

    We just talked to the college pharmacy people about the 4AP that Jim is taking. As I said before he is up to 50mg. a day of the 4AP-this seems to be a ton of pills he takes a day as they are 5mg. tabs. We are now going to try the time released formula and 15mg. tabs. When they get here, he will only take 1 tab 3x a day, rather than the 2 tabs 5x a day. So, in short he will be at 45mg. a day rather than 50 mg. a day...but these are the time released tabs. Question to others that have or do use 4AP...do you think that this will make any change or that he will see any change? ***************NOTE: We spoke to Barbara in Ecuador on Thanksgiving and she mentioned that Kao has 15 patients this time. My understanding is that they will all be back from Ecuador by December 16th.

  10. #210
    Today Jim is starting a new exercise program. It's more of a physical therapy program. There is a place that has recently opened in the area that has an aquatic therapy program as well as other equipment and so forth that we think will benefit him. We met with the owner for a tour and the details of his experiance with spinal cord injured individuals. He is quite knowledgable in regardsto SCI and knows more than we had anticipated about Jims condition. Remember we are in a small area and thus far we have not met anyone here in town that has any "hands on" experiance with spinal cord injury. So, Jim is starting this program today. It will include aquatic therapy, massage, weight training, they have a bike for him that he will be using, as well as other therapies that we hope will be beneficial to him. Once he has been in this program for a while, we can share exactly what it's all about. As far as updates on his condition since the operation with Dr. Kao, well, there is nothing HUGE to report. Jim has been really working hard at his exercise program that Kao prescribed and the pain seems to be a thing of the past (knock on wood). He seems to be having a bladder problem...there is no UTI, but he is constantly having accidents. He can transfer on to the toilet and urinate at will, but only in the morning...odd. He seems to have more strength in his left leg, and that is promising. It would seem he has muscle control...ever so slight in his thighs, you can feel this and see this as he flexes the muscles. His abdominal muscles are getting stronger as well. He stands at his walker...(he does not have the boots yet)...but his arms are doing the supporting for the most part. When he thinks about moving his leg(s) you can see his thighs twitch...or flex...but that's not anything HUGE. He seems to get these "surges" of sensation below his injury (in the legs and groin area)...but the sensations come as quickly as they go. They just happen more frequently now. So, we will let you know if and when anything new happens.

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