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Beijing - MK99's post OEC transplant report

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    #31
    Mike,

    I wish you all the best in your continued recovery. When will you be coming home. My son and I will arrive there December 19, it would be great to meet you. Take care

    Kitty

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      #32
      Hi Mike,

      Wishing you the very best & hoping we will soon be in Beijing, too, with our son who is C5.

      We were in Beijing a couple of years ago (in summer) & found it to be a wonderful city with hospitable people. I got so short of breath, I thought I would have a heart attack climbing the Great Wall, but then I am probably twice your age or more.

      Please keep us posted, when you feel rested enough to write. We are pulling for you!

      Susan

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        #33
        Brief update:

        It's now been 10 days since surgery and is far too early to make any major observations. However: I have noticed that my sensation has improved in accuracy on both my feet and calf areas. (I had some sensation there before but it's better now) I have also had some sensory descent on my stomach area but still pretty lousy. I have half decent sensation now on my lower back... T11 area.

        Last 3-4 days my legs are far more spastic and violent than before. I am trying to trigger spasms mentally but no success yet.

        Really looking forward to FES suspended treadmill training at Lynhdurst in Toronto upon my return.

        On the downside: I had brutal back pain for about a week after surgery. Now that's mostly gone (except for a pinched nerve feeling in my neck) and I have been fighting a minor fever for 3 days now. Could the fever be a sign of my body fighting/rejecting? Was it delayed by the Methylprednisolone? Nobody knows. If it doesn't go away soon I will not be going home on time.

        Kitty: I am scheduled to leave here Dec11th. Unless something goes wrong, it doesn't look like we'll meet up this time. [img]/forum/images/smilies/frown.gif[/img]

        [This message was edited by mk99 on 12-04-03 at 12:50 AM.]
        "Oh yeah life goes on
        Long after the thrill of livin is gone"

        John Cougar Mellencamp

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          #34
          Thanks for you update and for your courage MK99, keep the faith and work hard. Good results are in order.
          Sometimes the lights all shinin on me; Other times I can barely see. Lately it occurs to me what a long, strange trip its been: The Grateful Dead

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            #35
            Good luck triggering those spasms!

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              #36
              mike

              i also had a mild fever, it lasted a couple days. off and on but no real problem. i also saw an increase in spasticity, dr huang said it would go up and down in intensity, like peaks and valleys, but eventually go away. this seems to be the case, my spasms have definately decreased and some days nonexistent. something i never had before the surgery. bob

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                #37
                mike,

                A mild postoperative fever and increased spasticity are not surprising. Did you receive the 24-hour course of the MP?

                Wise.

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                  #38
                  Goodluck Mike and thanks for your updates. I shall be looking forward to see u in Toronto sometime. (If u remember, I met u in London,Ontario conference-) Best of luck for speedy recovery.
                  Nirav

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                    #39
                    Mike ,
                    I dont know how I missed this post,but all the best to you pal,I will be following this thread closely now.....

                    JimmyMack.
                    JimmyMack
                    Member: New Jersey Commission on Spinal Cord Reasearch
                    http://www.state.nj.us/health/spinalcord/index.shtml

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                      #40
                      Hello Mike,

                      This is the first time I heard of your operation too.

                      Having gone through an experimental surgery already, I'm surprised you moved so fast on this proceedure.

                      I won't undergo another one myself until I feel certain it will yield some substantial return. There's a limit to how many times I want risk my neck without profiting from it physically.

                      What made you decide the risk was worth the reward at this time?

                      Best of luck to you! [img]/forum/images/smilies/smile.gif[/img]

                      Comment


                        #41
                        Mike,

                        Glad to hear everything went well with your surgery and i hope you have great results!!

                        Comment


                          #42
                          "Did you receive the 24-hour course of the MP?"

                          Yes, I received the standard 24 hour course. I can't recall the exact measurements but basically a very high dose for the first hour followed by a lower dose for the next 23 hours.

                          Bilby, although I don't particularly enjoy surgery, pain and all that comes with it, my criteria for participating in a trial is:

                          1. I don't want to die
                          2. I don't want to get worse
                          3. I don't want to screw myself out of future therapies.

                          That's it. I figured there's enough evidence that OECs are safe and that they can partially regenerate/remyelinate damaged cords so "what the hell".
                          "Oh yeah life goes on
                          Long after the thrill of livin is gone"

                          John Cougar Mellencamp

                          Comment


                            #43
                            MK,

                            My son and I will be there in China next week. Is there anything you can tell me that I might need to bring that we or those arriving in the future might need. I had thought about asking Dr. Huang if he would use steroids on Chris then when you posted that you received it I was very happy. Do you think he would do the same for Chris if we ask.

                            Kitty

                            P.S. What is the weather like there right now

                            Comment


                              #44
                              [img]/forum/images/smilies/biggrin.gif[/img] Big smiles to mk99.
                              I'm glad there are people out there like you who are willing to go through the "surgery, pain etc" to be a pioneer as such, in the sci cure advances. I'm counting down the days until this procedure or something similar is available in my little country.
                              With so much cure research and advancements happening around the world, the race has started!
                              Best wishes for your future and a speedy recovery [img]/forum/images/smilies/smile.gif[/img]

                              klj
                              The important thing in life is to have great aim, and the determination to attain it.

                              Comment


                                #45
                                Kitty, your email address isn't on your profile. Could you email me:

                                mkowalski99@hotmail.com
                                "Oh yeah life goes on
                                Long after the thrill of livin is gone"

                                John Cougar Mellencamp

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