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    just arrived in beijing

    my name is Anca I'm ray's fiance. we just arrived in Beijing yesterday for the OEG surgery by dr. huang. we met with dr. huang last night and ray's surgery is expected to be next week. ther are around ten americans here that have done the surgery, some ALS and some SCI. the patients with SCI have recovered some sensory return pretty quickly after surgery. we took a lot of pictures but we can't show them until we get back. the hospital is pretty new, but all patients stay at a hotel for the first few days, then they get admitted to the hospital. all sci patients told me that they experienced severe pain shortly after surgery but it goes away. doctors do not give pain medication so it's a good idea to bring your own and vicodin is said to be too weak to relieve pain. they did a EMG test today and it was pretty painfull, but it has to be done before and after the surgery. i'll keep posting with as much as i can.

    #2
    Anca, thanks. Wise.

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      #3
      Thanks for the update Anca. It is good that he has someone there like to be there for him. I know it means a lot to him.
      "No mother on either side could say that whatever was won was worth my son"--Steve Mason

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        #4
        Hi Anca and Ray,

        A friend from South Dakota with ALS leaves the 12th. His name is Nick and wife Ann, they'll make good company.

        Good luck.

        "All you have to decide is what to do with the time that is given you."
        Gandolf the Gray
        http://justadollarplease.org/

        2010 SCINet Clinical Trial Support Squad Member

        "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

        .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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          #5
          Thanks for the support, I'm sitting here with Jenet and Derek from LA, they are great, she says she knows Leo very well. Janet says: Derek had his surgery and his sensation dropped to his anckles and he is able to sweat, we are heading home Tuesday, sorry i haven't been writing, i've been busy helping out the doctors with patients, talk to you soon..

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            #6
            hi everyone. just e-mailing to say hi and so far everything is ok. surgery is next week and im just hanging out till then. took alot of pics of everthing and will post later. ill keep in touch.
            ray

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              #7
              all sci patients told me that they experienced severe pain shortly after surgery but it goes away.
              doctors do not give pain medication
              why don't they give pain medication??
              that sounds barbaric!

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                #8
                hey guys, just want to know if their is anyone planning to come to beijing so they can bring some meds. people here say that its a good idea to bring extra antibiotics. if so, please e-mail me at rayfak2003@yahoo.com. they dont give certain pain meds because they feel that americans take too much and that massage and other techniques work better.

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                  #9
                  Thanks Ray and Anca. Keep the updates coming.

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                    #10
                    The Chinese Drs are afraid that certain pain meds and antibiotics may kill the OEG transplants.


                    JJG
                    Jake's Pop

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                      #11
                      Member
                      posted 12-13-04 10:05 AM
                      One year ago my daughter Daniela (nani), suffered transverse myelitis at the high cervical area.
                      The doctors told me that she was going to die, however today she is at home with mechanical ventilation.

                      Nani is three years old and she is able to breath during a few hours, but the exchange of O2-CO2 is not good as she has not strong enought. She is having constantly pulmonar problems (atelectasias, pulmonia, distress).

                      My questions are:

                      should I take her into Mr. Huand surgery? I think so, but there is any problem in taking this surgery for further surgerys???

                      There is any other surgery in order to me her move al least one arm? ( I refer now to perifehical denervation in the arms as I was told the the second motor nueron in the her arms is dead).

                      There exist any medication in order to make her breathing better like the ones that the people with asma use?

                      Nani is taking daily rehabilitation, but they only move her extremities. On another hand I give her daily electrotherapy and place her standing in a cachine I bought. There are further rehabilitation procedures that my baby can have?

                      Thanks for you answer.

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