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Ten frequently asked questions concerning cure of spinal cord injury

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  • Dear Lori,

    Let me take each of your questions in turn.

    1. Where in Pittsburgh area are there good rehabilitation centers? Philadelphia is one of the major centers for spinal cord rehabilitation in the United States. Here are some of the centers with their links. I added some comments of what I know and perhaps others can add what they know.
    Bryn Mawr Rehab Hospital*- Malvern, Pennsylvania (PA)
    Chestnut Hill Rehabilitation Hospital - Glenside, Pennsylvania (PA)
    Good Shepherd Rehab - Allentown, Pennsylvania (PA)
    University of Pittsburgh Institute of Rehabilitation and Research. They use to be called the UPMC Rehabilitation in Squirrel Hill but recently moved to UPMC South Side. The School of Health and Rehabilitation Sciences trains most of the therapists for the region. Rory Cooper is the head of the rehabilitation engineering department with a strong role in developing technology for people with spinal cord injury.
    Magee Rehabilitation Hospital - Philadelphia, Pennsylvania (PA)
    MossRehab Hospital - Philadelphia, Pennsylvania (PA). This is an excellent spinal cord rehabilitation center.
    Regional Spinal Cord Injury Center of Delaware - Philadelphia, Pennsylvania (PA). This is the combination of Magee and Thomas Jefferson University Hospital. It is one of the 16 model system centers in the United States and has many experts.
    Philadelphia Shriners Hospital, Philadelphia (PA). This is probably the pediatric spinal cord injury center in the United States.

    2. ASIA scale. The ASIA classification system has four components:
    • A classification system: A, B, C, D, E (these are general categories indicating whether the injury is complete or incomplete and the degree of incompleteness.
    • Neurological level. This is defined as the highest "normal" level.
    • Motor score. Ten muscles and their scores (0-5) add up to a score of 100.
    • Pinprick score. Each dermatome is scored for pinprick sensation on a scale of 0-2 (0=none, 1=abnormal, 2=normal) and added.
    • Touch score. Each dermatome is scored for light touch sensation on a scale of 0-2 (0=none, 1=abnormal, 2=normal) and added.
    • FIM. Functional index. This is a series of questions concerning function.

    3. Can a complete injury become incomplete? Yes. About 5-17% of people with so-called "complete" injuries become "incomplete". Note that I am using the definition of incomplete that includes the recovery of anal sensation and function. A lot more people get back 2-3 levels of function back below their original injury level. Christopher Reeve for example was a "complete" spinal cord injury and he became "incomplete" with recovery of sensation in over 2/3 of his body and return of motor function down to C4 and several muscles in his hands and legs.

    4. What are options to a $6000 standing frame? Most standing frames are cheaper. They also should be coverable by medical insurance. They may also be cheaper second-hand. I have seen many people in China who do standing every day without a standing frame. You go up to a railing against the wall. Somebody lifts you up around the chest and slip a sheet under your butt. The ends of the sheet are inserted around the railing and one person pulls on the sheet to lift you to a standing position while another person stabilizes your knees. You stand facing the wall while a person massages the leg muscles. This is what they do everyday in the rehabilitation hospitals in China. They also use what is called a walking frame which is on wheels, with padded handles on top which people can rest their upper body weights on. They put elastic bands in figure-8 around the ankles to keep the foot flexed. They then walk with somebody using cloth strips to keep the knees straight. I will try to find some photographs or draw them for you.

    5. FES and E-stim are probably referring to the same thing. Functional electrical stimulation generally refers to muscle stimulation.

    6. Are they safe? You should use them initially under supervision but they are safe for home use.

    7. Baclofen. As you cut back to 70 mg, are you noticing more spasticity? Stopping baclofen should not restore voluntary activity but spasms and spasticity may increase.

    8. Spasms around your chest and stomach. Are the feelings associated with actual muscle spasms? These sound more like neuropathic pain. Neurontin (gabapentin) may help these.

    9. Anxiety. You may need something for anxiety (not on a regular basis) but for occasional use. Albuteral is a bronchodilator and not for anxiety. Klonipin is an alpha-adrenergic agonist that has anti-spastic effects. The fact that you were on 120 mg of baclofen and 3 mg klonipin suggests that you had or have serious spasticity. Are you taking anything for your bladder spasticity, i.e. ditropan?

    It is very good that you have trace triceps. You need to work on getting more back. Triceps make a lot of difference in allowing you to do independent transfers. If you are holding your hands out palm down, wrist flexion is downward and wrist extension is upward.

    Finally, if your doctor has never examined you, I suggest changing doctor.

    Keep asking questions.

    Wise.

    Comment


    • Dear Dr. Young

      Can you please bring me in contact with doctors from kunming hospital? I think Dr. Zhu is neurosurgeon there to do transplantation. Can you find me her e-mail, fax and phone number as i could contact her and get her suggession for my kind of injury's treatment.
      I will be very thankful to you. God bless you.

      Jawaid

      Comment


      • Jawaid, I will try to find the email address for you. I usually communicate with Dr. Zhu through my colleagues in Hong Kong who email her in Chinese or telephones her. Wise.

        Originally posted by Jawaid
        Dear Dr. Young

        Can you please bring me in contact with doctors from kunming hospital? I think Dr. Zhu is neurosurgeon there to do transplantation. Can you find me her e-mail, fax and phone number as i could contact her and get her suggession for my kind of injury's treatment.
        I will be very thankful to you. God bless you.

        Jawaid

        Comment


        • Dr. Youngatheart

          Dr. Young-

          When you find the time, could you possibly give me some of the dirt on what's going on in Dr. Jessell's lab at Columbia. It seems promising in addressing the replacement of motoneurons. What do you think? Are you lightyears ahead of him, or just studying other aspects of SCI? Am I delusional in your honest opinion to think that there will be a time when I can stand and walk again in the near future? By the way, I suffered a major insult to the pial spinal cord due to a type 4 spinal AV fistula on the anterior spinal cord, just above the Conus. Venous congestion, not bleeding, caused death to neural tissue. As of now, years after the fact, I cannot walk or even stand out of my wheelchair. From the description of my SCI, can you guess my level? Due to my bladder going first, then paralysis ascending, I have no bowel control and/or bladder or sexual functioning. Just out of curiousity, would a penile implant be able to return me to the full length and width I had before my SCI? I realize that this is not your area of expertise, but you seem to have soo much experience with all aspects of SCI, that I had to ask. This is a dumb question, but I'll ask it anyway, are you so confident with the pace of research that you'd be willing to undergo a surgery that would cause SCI for a million bucks?

          Comment


          • Dr. Young,

            I have a T4 compression injury. I have alot of spasm and tone. I am on 100mg of baclofen a day, and I use a TENS daily, but after a while my tone and spasm still comes back, although not as bad as when I don't use the TENS machine. I was just wondering, if a regeneration therapy came to cure me, would this mean that my cord would regenerate quicker or slower because of the fact that I have these bad spasms and tone. Damagedgoods, in regards to your question to Dr.Young about the $1 million, I think that he would rather a cure for us come today than have $10 million. It would give him more happyness and satisfaction than money would. Am I right in stating this Dr.Young?

            Comment


            • cure is a four-letter word

              Let's face it, we're never gonna get significantly better. Even that Dr. Schwann told me in a e-mail, " will a complete paraplegic ever return to walking and functioning like before his injury, very certainly no"! 99% of SCI specialists don't have a interest, or are leaving it up to somebody else to do, to try to cure SCI. Why not? They are making one hell of a living keeping us alive, and passing us on to other useless doctors in a sick game of musical chairs, where we end up with the doctor we started with, with still no solutions, and worse, I have to explain my story all over again to this pompous IDIOT who damn well has my medical history written up in his files. These guys look at our MRI's and case histories while we are in the waiting room, after having been given this info. from my parents weeks earlier. They are rude, and worse, useless and helpless in effectively addressing the problems with SCI.

              Comment


              • Dearest Dr. Young


                Thanks for being cooperative as usual but i think after few days Hong Kong Symposium will be the best venue for you not only to meet Dr. Zhu but also find reliable cure for my kind of incomplete injury as several researchers will be presenting their data there.

                No matter then to whom you refer to me for treatment. Either it is Dr. Zhu or any other from china or elsewhere. Now i am looking towards you for my treatment option. Hope you will try to contact some doctors to discuss for my treatment. Waiting e-mail address of Dr. Zhu.

                God bless you and give you happy and healthy life.

                Best Wishes

                Jawaid

                Comment


                • Dr. Young,
                  At your last open house you mentioned several different clinical trials taking place around the world that involve combination therapies...i.e. umbilical cord blood with lithium. My question is are there any combination therapies currently taking place that involve lets say OEG surgery plus tying off a peripheral nerves and placing that at the point of injury in addition to lithium. Hence, combining 3 or 4 therapies at once. I realise there is more risk involved but I was just curious.
                  Regards,
                  Steve
                  http://samanthaslusak.tripod.com/

                  Comment


                  • Uncle Steve,

                    I was making the point that there should be combinations. There are actually very few trials that are doing combination therapies at the present. The only one that I know of is Henreich Cheng in Taiwan who has been doing peripheral nerve transplants plus a cocktail of growth factors.

                    Several of the therapies that I had mentioned at the Open House are now in Phase 1 clinical trials: IN-1 (Novartis trial in Switzerland), Cethrin (Bioaxone in USA and Canada). Chondroitinase is not yet in clinical trial. Lithium, to my knowledge, has not yet been tested in human spinal cord injury but we are planning to do so in chinascinet. The peripheral nerve implant that I had mentioned is being done in China but it was a second-hand report and we hope to hear more about it at the Hong Kong Symposium. I don't know any combination study being done with OEG.

                    Wise.

                    Originally posted by Uncle Steve
                    Dr. Young,
                    At your last open house you mentioned several different clinical trials taking place around the world that involve combination therapies...i.e. umbilical cord blood with lithium. My question is are there any combination therapies currently taking place that involve lets say OEG surgery plus tying off a peripheral nerves and placing that at the point of injury in addition to lithium. Hence, combining 3 or 4 therapies at once. I realise there is more risk involved but I was just curious.
                    Regards,
                    Steve
                    http://samanthaslusak.tripod.com/

                    Comment


                    • Wise,

                      Regarding combination trials in China, are you aware of any FDA regulations that may prevent successful therapies from being implemented in the US?
                      ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

                      Comment


                      • Originally posted by Steven Edwards
                        Wise,

                        Regarding combination trials in China, are you aware of any FDA regulations that may prevent successful therapies from being implemented in the US?
                        Steven,

                        That is too open a question. Can you be more specific, since you know all the therapies that are being considered for clinical trial? FDA certainly requires safety and other data before they will approve but I am not aware that any treatment has been turned down by the FDA when the data was avaiable.

                        Wise.

                        Comment


                        • Open House follow up...

                          Dr. Young,
                          I never got a chance to ask Tim this question last Friday night. What difference did Tim see after he had the OEG procedure done?
                          Regards,
                          Steve

                          Comment


                          • Wise,

                            Sorry for being vague. I didn't know if the FDA required any superficial, non-necessary measures to be taken in order to approve trials that are performed completely outside of the US. If you can think of any, we can (try) to find ways around them.

                            Will the entire process be as simple as deciding on therapies to try and then gaining FDA approval?

                            I guess, more simply, assuming we had a comparable network in the US and everything else was equal, would the process be easier to gain approval for if it were done domestically?
                            ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

                            Comment


                            • Originally posted by Steven Edwards
                              Wise,

                              Sorry for being vague. I didn't know if the FDA required any superficial, non-necessary measures to be taken in order to approve trials that are performed completely outside of the US. If you can think of any, we can (try) to find ways around them.

                              Will the entire process be as simple as deciding on therapies to try and then gaining FDA approval?

                              I guess, more simply, assuming we had a comparable network in the US and everything else was equal, would the process be easier to gain approval for if it were done domestically?
                              The problem is not and has not been the FDA. All that they requires is evidence of safety. In general, they do not stand in the way of well-planned clinical trials of treatments for which there is adequate evidence of safety. Of course, this is assuming that they do not get political interference (which has been happening more lately, such as in the case of Plan B). Yes, it would be a matter of setting up a network and getting clinical trial (IND) approval.

                              Wise.

                              Comment


                              • Originally posted by Uncle Steve
                                Dr. Young,
                                I never got a chance to ask Tim this question last Friday night. What difference did Tim see after he had the OEG procedure done?
                                Regards,
                                Steve
                                Uncle Steve, Tim got some sensory function back. Wise.

                                Comment

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