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Beijing - Tim C's OEG surgery report

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    merco, I don't know. I hope that it goes away. Tim did have neuropathic pain before he went to Beijing but he says that it has gotten worse after the surgery. Dr. Huang has said that most patients have a temporary period of pain during the days that follow surgery. Perhaps the other members who had OEG transplants in Beijing should comment on their experiences. Wise.

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      Tim C

      more pain, yikes, that might part of the pandora's box of sci cure - I hope not

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        Just Sharing something I went through!
        For those that have recent OEG and other surgeries just a little something I remember from decompression, fusion surgery at C-7. (Dr Young and others please comment) This was 20 yrs ago, due to other SCI medical related problems I had to postpone decompression surgery for over 2 months so some natural decreased swelling of the spinal cord had occurred. Upon wakening from surgery I distinctly remembering tingling throughout the outside part of my right arm down to my pinky finger, with no sensation or movement prior to surgery. In the following days I began to experience what I would best describe as hypersensitivity throughout my upper body, at and above my nipple line and both arms. I'm saying it hurt when the air conditioning vent came on, I thought great, fix one thing mess up another. Well after some time (not long days/weeks) the pain passed, slowly at 1st and then one day I thought about it, realizing the pain was gone replaced by some what of a more normal sensation, not as pre-injury but not far off. In discussion with my neurosurgeon we concluded this as possible evidence of the nerves reaction to sort of waking up after the pressure was relieved post surgery. Now what you may have, or possibly have are the 1st stages of nerve reconnection, which in turn, your body/brain will react to, and except as a healing process followed by further recovery to what ever stage this surgery will bring you too. It would be great to have an OEG recovery data base (World wide) to document patients recovery changes/rates to better understand stages and rates of recovery for optimizing future clinical trials, good luck to all those doing clinical trails. Remember we all learned to crawl before we could walk.

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          Quadsessable; thank you foryour experience and commentary. Surprisingly, I agree with Dr Wise in hoping the neuro pain is short lived. The burning, and shock pains felt in my limbs at their peak are kicking the shit out of me. The sticker-shock is the anomally that my particular situation is pain that has steadily increased over a period of months, not weeks. In the absence of consistant prior human clinical trial documents to refer to, the light at the end of the tunnel is 'blinking'. As for the pain, is it a function of umasking of prevailing conditions, or caused by the action of nerve growth, and whatever pain anticipated, or unanticipated. In documenting the types, and intensities of the pains, it should be imperative, and at the very least, useful for all of the novel therapies.
          I test drove medtronics unit with minmal success. I am considering almost any method of pain relief.
          I regret the most that the pain has my biggest obstacle to aggressive rehab. The assumption, from sources like my physiatrist, is only that rate of which I plateau.

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            tim did u have this pain prior to surgery
            Bike-on.com rep
            John@bike-on.com
            c4/5 inc funtioning c6. 28 yrs post.
            sponsored handcycle racer

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              Hey there Tim, good to see you're posting regularly.
              The neuro pain has been something you have made us on the sidelines aware of. You also seem to down play any "significant" motor recovery. However, on 5/28 you mention picking up potato(e) chips. did you recover wrist extensors? That would be C6 level. Also, how is your arm control better? There are many muscles that are recovered at the C6 level,not just the ability to have a pinch grasp. Here is a good website for how functional level tanslates to activities that can be performed: http://calder.med.miami.edu/provider...NAL/over2.html
              Has your pain caused you to downplay the recovery you have seen?

              I am greatful for you and the others that have served as modern day trailblazers. Even a single level gain will open new doors for most SCI. I'm not viewing Dr Huang's procedure as a "cure", but it could improve the quality of life. If Dr Huang's procedure continues to evolve into a combination therapy, I'll be on a plane to China, just for the hope of a better tomorrow.
              Some days it's just not worth chewing through the restraints.

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                KNOW news is better than NO news....
                Slomo, nothing could be more true. If it were me sitting on the sidelines while a steady flow of sci's soaked up Dr Huang's OEGs, I'd be devouring all progress info, positive or otherwise, like a shark in a feeding frenzy.
                Not sharing our true experiences does everyone here a disservice. We're all here for the same reason, quality of life improvement for ourselves, or our loved ones. One level of cord correction, equivalent of, can yield a new world for us. If it were that easy however, someone would be selling OEG kits by mail order by now.
                My neuropathic pain levels post OEG have increased by no mistake. As measured by scale? It's relative, high tone, burning and shock sensations are bothersome. Thus far still defined as temporary? I must defer to Dr Huang for speculation.
                When not toned out, as previously reported, I'm just able to pick up a snack chip using my c5 hand only. My snack chip motor control has improved. As stated several times before, there has been inconsistency in my observations.

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                  Update; pain today, gone tomorrow?
                  Another day, marked by pain. At the very least, here is what's consistant; the first real pain of the day consists of a dose of the leg/butt burns settling in during, and immediately following my morning bowel program. Pain meds take the edge off to get me into the shower. During the shower I finish emptying my colon, resulting in the same hellish, leg/butt burn. Pain meds to the rescue, about 50% of the time. After exercise [which i see no correlation to helping, or worsening the pain] I transfer to a power chair. In no less than 4hrs in the chair a gradual, yet unmistakable burn pain begins in my hands and legs. These burn pains are soon overshadowed by a strong burn under my butt and hamstrings, any body part touching the seat. Full relief is only when I can transfer off chair. Partial relief achieved if I can raise my feet and resting them on a soft chair, bed etc. From this point I usually [75% of the time] have to endure the burn pains for the remainder of my day. In addition to the burn pain however, I begin getting the internal shock sensations up my legs. These are intermittent and they hurt, wouldn't wish them on my worst enemy. PS, and btw, I tend to work my C4 shoulder like my C5 which renders muscle damage and pain in the form of a tingling, itchy burn sensation by days end, everyday.
                  Oh yes, through all of my pain/fun I achieve small improvements from home-based exercise therapy. I cannot but wonder how much, if at all, more I could have gotten from my OEG procedure if not hindered by my pain.
                  I confess that I have not been regularly following the many splintered threads related to Dr Huang, and therefore largely unaware of others that may be experiencing something similar, or even remotely to similar to my situation.
                  I had the pleasure of greeting Dr Huang and briefly describing/answering questions to an audience at the recent Rally for Cure event. He was thoughtful enough to express his remorse regarding my chronic pain in private. He implied that my condition should be transitional, and temporary. I'm sure that if not for the time constraints, and improper settings he would have offered to physically examine me. Obviously, those luxuries were not to be had that day however unfortunate for me. I believe a follow up at this point with Dr Huang is a must. A must for my well being and the countless other SCIs considering the OEG transplant. If I was a 'bettin man' I would bet the biggest hesitation amongst our ranks in seeking this procedure is [are] as follows;
                  1. SCIs will not put at risk the motor/sensory levels he, or she currently has.
                  2. SCIs will not risk introducing more pain, or first time pain into the complications of daily living, only to be considered as insult to their injuries.

                  This life sucks enough. The Wise Youngs, Dr Huangs, and just a short list of others are continuing to work from a 'dollar and a dream' to help cure us.
                  I will insist on a follow up exam to divulge the pain mystery and keep everyone advised.

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                    I just got MRI scans and i want to send the scans to Dr. Huang, but i have heard that instead of sending the Film, theres a place you can send your film and for a fee they'll put the film on a CD so instead of sending the film you can send just the CD. Does anyone know where this is? Or does anyone advise to send the original film?

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                      hi me26, welcome to cc, i havn't heard about scanning film to cd but it may be out there. ask your radiologist if he/she can put them on cd.

                      "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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                        BOEG03

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                          Tim;

                          I know the pain you described in your June 30th post. I have the very same pain ever since I was shot, April 16 1992. I am looking for ways to raise the funds for the surgury in China. My dream is to have the pain gone FOREVER! Anything else would be a blessing but is not expected.

                          Wishing you continued success!!!!

                          Michael T. Durham
                          [img]sci_injured@kdtechnologies.com[/img]
                          Thank You;

                          Michael T. Durham
                          380gunshotvictum @ kdtechnologies .com

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                            me26,

                            I had my MRI put on a cd. I asked the technician where I had it done if he could do it and he arranged everything. I had to wait 2 weeks and it was fedexed to my house.

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                              Tim, what is your pain level now? Your experience is scary to those of us who suffer from neurogenic pain. Was it all worth it then? I am not sure I understand what progress you have made?

                              gretchen 1
                              gretchen 1

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