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Ten frequently asked questions concerning cure of spinal cord injury

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  • Dear Sir

    I’m Dr. Mostafa Shohieb ; Orthopaedic Surgeon ;
    Alexandria University Hospital ;
    P.O.Box 130 El-Saray ;
    Alexandria 21411 ;
    EGYPT.
    I’m Interested in Spine Surgery ; Traumatology ; Paediatric orthopaedics and Medical business .
    I'd like to be an emenant doctor in managing PARAPLAGIA with STEMCELL therapy; so please send me details about it specially :
    • Doctors interested and doing it.
    • Any products ( Drugs………..etc) approved or in its way of approval indicated in such situations.
    Hoping to be an active member in your mailing list.
    Best regards ;


    Dr. Mostafa Shohieb ; Orthopaedic Surgeon ;
    Alexandria University Hospital ;
    P.O.Box 130 El-Saray ;
    Alexandria 21411 ;
    EGYPT.

    Comment


    • Question for Wise

      When the cure does come are we going to gain control of our bladder and sexual function? The reason I,m asking is that I have two friends that are SCI one was a C 5-6 and the other was T 12 and when they left hospital they could walk perfect but neither had sexual function and they both had to use self cath. This seems to be the last thing to return. I,m wondering when we get this injecton will be walking around and also need to self cath. This is the most important thing to me to get back. Walking is a issue surly but I desperately need sexual function and need to be able to know when I have to go to the toilet.

      Thanks

      Comment


      • Hello - I have a question. Is Schwann cell transplant currently available and at what point following an injury is it appropriate? We have been told that nerve connections can regenerate for the first 2 years following the injury. Would one wait that long to consider Schwann cell transplant?
        Richard

        Comment


        • Originally posted by EDD
          When the cure does come are we going to gain control of our bladder and sexual function? The reason I,m asking is that I have two friends that are SCI one was a C 5-6 and the other was T 12 and when they left hospital they could walk perfect but neither had sexual function and they both had to use self cath. This seems to be the last thing to return. I,m wondering when we get this injecton will be walking around and also need to self cath. This is the most important thing to me to get back. Walking is a issue surly but I desperately need sexual function and need to be able to know when I have to go to the toilet.

          Thanks
          EDD,

          Bowel/bladder/sexual (BBS) function is often the last functions to recover in people with spinal cord injury. However, it does recover in many patients. Much depends on the level of the injury. Paradoxically, injuries to the lower parts of the spinal cord that mediate BBS function may be most difficult to repair. Details of the injury are very important and I don't think that there is a single solution to recovery of BBS function. Please tell me more about your level of injury.

          Wise.
          Last edited by Wise Young; 12-22-2005, 03:52 PM.

          Comment


          • Originally posted by riplavin
            Hello - I have a question. Is Schwann cell transplant currently available and at what point following an injury is it appropriate? We have been told that nerve connections can regenerate for the first 2 years following the injury. Would one wait that long to consider Schwann cell transplant?
            Richard
            Richard, very good question. Schwann cell autografts are being done now in China. It had been done by Tim Volmer when he was at Yale before he moved to Barrows Neurological Institute and I believe that he is restarting clinical trials in Arizona. There has not been enough experience with such transplants to know the best time to transplant.

            Wise.

            Comment


            • Originally posted by damagedgoods
              I'd love even a miniscule cure for next christmas. What's the outlook for 2006? If it is the same ol' thing, I guarantee you that I won't be alive by next xmas. What the f--- is going on here? I was expecting big things by 2007, because I was told by some of the top pioneers in research that by then, there would be substantial improvements. I was told this in 2002, and today 2007 looks no better or hopeful than right now.
              When does hope become pure delusion? My hope is for partial improvements, and if this is delusional, then SCI really is unfixable..and will always be so.
              DG,

              I am hoping for some good news from trials such as those being conducted by Bioaxone (Cethrin), Novartis (IN-1 anti-Nogo antibody). Clinical trials of some additional promising approaches such as Nogo receptor blockers, lingo blockers, cAMP/Rolipram, and chondroitinase have not yet begun. There may be some good news from the Brisbane OEG study. The ChinaSCINet trials will be starting in 2006 and the results will not be available until 2007 or later.

              Wise.

              Comment


              • Originally posted by Wise Young
                EDD,

                Bowel/bladder/sexual (BBS) function is often the last functions to recover in people with spinal cord injury. However, it does recover in many patients. Much depends on the level of the injury. Paradoxically, injuries to the lower parts of the spinal cord that mediate BBS function may be most difficult to repair. Details of the injury are very important and I don't think that there is a single solution to recovery of BBS function. Please tell me more about your level of injury.

                Wise.
                I,m a T12- L1 complete. Nearly 2 years post injury now. Had one of the top spinal surgoens do the surgery on my 4 hours after I got throwen through the window of a car. The surgery was the very latest techonolgy with to opperations one from the back and the other fron the front. I have a plate in place of one verterabre and a cage in of my spinal coloum aswell.

                Comment


                • Nice to see you back Dr. Wise. Now please give me the e-mail address of Dr. Zhu or Dr. Yansheng Liu as i was waiting you very very anxiousely. If you want to contact me in private and give your any suggessions and other things then email me at muradjawaid@hotmail.com

                  I am waiting your speedy reply.

                  Sincerely

                  Jawaid

                  Comment


                  • T12-L1 complete

                    I am a T12-L1 complete as well. When you imply complete, do you have any movement whatsoever below your injury? Or is it just that you have no sacral sparing? I catheterize, and when I insert it, I feel absolutely nothing at all. NOTHING! I would assume that those who must catheterize and cannot feel it are all complete injuries. Our injury location, especially mine, on the anterior spinal cord just above the Conus, is 100% unfixable, and will remain that way for the rest of our lives. To make matters worse, scientists aren't primarily concerned with this level, since they want to help those with higher injuries, who may very well respond to treatment. We, however, will not, nor will we be given the time of day is some miracle arises in the next 10 years. Following SCI research is worse than watching grass grow, because eventually, grass becomes overgrown, no matter how long you wait, while SCI research is still basically a field of dirt, with barely any grass there to grow in the first place.
                    On this xmas eve we appear lost in a quagmire of aborted hope and promises. The whole Korea thing fell apart worse than anyone could've imagined, and 2006 is looking completely void of any visible progress. It's gonna take a massive miracle, 1 out of a trillion, to see a major breakthrough in the next several decades. Luckily for me, I will end it all by next Christmas, and I'll finally be at peace. No more searing neuropathic burning, completely immune to any form of treatment, and no more being cruelly irreversibly neutered for life, with 0 sensation, ability to have a sustainable, hard erection, and/or orgasm. All this for my first injury to my body after skiiing off cliffs for most of my life, an injury due to a doctor's needle and indifference. I say fuck it all!

                    Comment


                    • dg;

                      Here is some reading material for you. Don't give up, we need your voice.

                      John

                      http://www.travisroyfoundation.org/p...urces-hope.htm
                      "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

                      Comment


                      • Originally posted by damagedgoods
                        On this xmas eve we appear lost in a quagmire of aborted hope and promises. The whole Korea thing fell apart worse than anyone could've imagined, ......................

                        ................. injury due to a doctor's needle and indifference. I say fuck it all!
                        Damagedgoods, I'm still hopeful that within the next few days ( before New Year's) we will find out that Dr. Hwang did indeed establish 2 patient specific stem cell lines.
                        Many scientists who have worked with him can go on with that knowledge and build on it.

                        However I too will not deny that I have felt quite disillusioned this year.

                        Please let's also make sure that others will not endure a lifelong of suffering due to doctor's negligence.
                        Please speak up any time you can about medical mal-practice if that is what occurred in your case.

                        My son Jason(15) became paralyzed from the nose down due to a misdiagnosis and missed treatment opportunity after he collided with another soccer player at age 7.
                        There are some doctors who are not indifferent to the epidemic of medical malpractice which kills hundreds of thousands of americans every year and doesn't even take into account the incredibly large number of medical malpractice victims like you and my son, and others who become severely disabled.

                        Thank you for speaking up about the immense cruelty of sci.

                        And keep up your spirits. There must have been some basis to So. Korea's advances......

                        Comment


                        • Originally posted by john smith
                          dg;

                          Here is some reading material for you. Don't give up, we need your voice.

                          John

                          http://www.travisroyfoundation.org/p...urces-hope.htm
                          Most of that reading is already here
                          Research Articles & Lectures


                          Bases for Hope in Spinal Cord Injury - Link to PowerPoint presentation by Dr. Wise Young, PhD MD, W.M. Keck Center for Collaborative Neuroscience, one of the country's foremost authorities on spinal cord injuries & research. Updated in 2005.

                          Is A Cure Really Possible? - Link to article by Dr. Wise Young, PhD MD, W.M. Keck Center for Collaborative Neuroscience, one of the country's foremost authorities on spinal cord injuries & research. February 2005.

                          Ten Frequently Asked Questions Concerning Cure of Spinal Cord Injury - Dr. Wise Young, PhD MD, W.M. Keck Center for Collaborative Neuroscience, one of the country's foremost authorities on spinal cord injuries & research, asks and answers 10 basic questions about SCIs. February 2005.

                          Morality of Stem Cells - Link to PowerPoint presentation by Dr. Wise Young, PhD MD, W.M. Keck Center. December 2001.

                          The Effects of Intensive Training on Motor Recovery - Article by Dr. Wise Young, PhD MD, W.M. Keck Center about the promising effects of training and exercise to enhance and even restore motor function.

                          Rehabilitation: Exercise & New Function - Fact sheet on FES bicycles and treadmill (locomotor) training from the Christopher & Dana Reeve Paralysis Center. Describes the positive effects FES & physical training have had on Reeve's recovery.

                          Advances In Spinal Cord Injury Therapy - Article by Dr. Wise Young, PhD MD, W.M. Keck Center about the advances in spinal cord injury research since 1995.
                          SCI Hope - Lecture by Dr. Wise Young, PhD MD, W.M. Keck Center regarding the latest therapies for spinal cord injury that are likely to go to clinical trial. October 2001.

                          Comment


                          • Originally posted by Jawaid
                            Nice to see you back Dr. Wise. Now please give me the e-mail address of Dr. Zhu or Dr. Yansheng Liu as i was waiting you very very anxiousely. If you want to contact me in private and give your any suggessions and other things then email me at muradjawaid@hotmail.com

                            I am waiting your speedy reply.

                            Sincerely

                            Jawaid
                            Jawaid, I sent you an email message with Dr. Zhu's contact information. May I suggest that you set your UserCP to accept private messages on the forum or allow message to be sent to you via email. This will make it easier to contact you and you don't have to post your email on open forum.

                            The reason why people should not post their email addresses on public forums is because it will bring you a lot of junk mail.

                            Wise.

                            Comment


                            • Our injury location, especially mine, on the anterior spinal cord just above the Conus, is 100% unfixable, and will remain that way for the rest of our lives. To make matters worse, scientists aren't primarily concerned with this level, since they want to help those with higher injuries, who may very well respond to treatment.
                              Damagegoods, I not sure what you base this statement on. If a treatment is avaialble for C-level injuries it should also work on T-level injuries. I also am not sure that scientists look at the level of injury when performing research on SCI. Regardless of the injury level the trick is to get axons to regenerate across the injury site. Once this can be accomplished it should be applicable regardless of the injury location.
                              I am pretty new at dealy with SCI and it's a bitch but we need to have hope and continue to do whatever we can do help with finding a cure. Many of us are waiting for someone to hand us a cure without willing to help out. This is not directed at you but I wonder how many of us here have even contributed finacially to help out. Hang in there

                              Comment


                              • Dear Young

                                Thanks for giving contact numbers. I have contacted Dr. Zhu through my good friend in china. She said that i will try to get permission for your treatment from the authorities as she said that hospital is army related. I will be able to find out her answer in few days. Hope for the best and will tell you. In case if Dr. Zhu is unable to get positive reply from the authorities then what should i do? I need your help and please reply for my below given concerns.

                                1. I have heard about a Bio Company Beike. They are treating SCI Patients with fetal schwaan cells too at Nan Shen hospital china with some results. Dr. HU is doing this treatment. They have treated about 10 patients now but patient's injury was two years old while mine six years. Tell me in case if Dr. Zhu is not treating whom should i go? Either Dr. HU or Huang for OEC?

                                As i am incomplete L1 and walking very easily so i want to get the treatment. May be i can improve some of condition? What you suggest me wise? I will follow you only? You can email me if any personal.

                                Sincerely

                                Jawaid

                                Comment

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