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Ten frequently asked questions concerning cure of spinal cord injury

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    Originally posted by Princess "Leia"
    Hi Dr Young,

    I recall you explaining the hows/ whys a walking quad becomes weak after walking. It happens to me often, as one member told me, "I use up all my physically currency" and have to sit down for a good lengh of time to recover. I can not find the post and hope I put the question is the correct place. When you have the chance can you please provide a brief explanation
    Thanks,
    Pam
    Pam,

    I remember walking all over Congress with you. You are my heroine. Fatigue is a common problem in people with incomplete spinal cord injury and multiple sclerosis. The mechanism is not well understood. However, I know that many people who have MS or SCI and take 4-AP (Fampridine) say that this drug helps reduce fatigue. The fatigue can occur at the axonal level, neuronal level, or muscle level. Let me do some research on this and come back with more details.

    Wise.

    Comment


      This surgery sounds very similar to some of the procedures I had done for my Brachial Plexus Injury at the Mayo Clinic. If it is, the donor nerves, called Sural nerves, are harvested from the back of both calves (since these nerves are sensory nerves, the only after effect from their being removed is a small patch of numbness on the outside of the ankle about the size of a tennis ball). Then they are grafted to the uninjured or not paralyzed side's C7 nerve and to which ever muscle group(s) is targeted on the paralyzed side. For me it was deltoid, to try and keep my shoulder from falling out of socket. I don't believe the surgeons at the Mayo Clinic are using the whole C7 nerve yet, like they have been doing in India for years, but that may have changed. In my case half the C7, on my uninjured side, was utilized for my injured side's deltoid and the loss of function from my uninjured arm is minimal, slightly weaker triceps and biceps. It took about 18 months before I started getting any signs of innervation. Like most of my different nerve graft surgeries, you have to focus on contracting the original muscles that the nerve was innervated to, before it was rerouted. So for me to move my right (injured) shoulder at all (which is actually very little, about 5 inches from my side/hip at most) I contact/flex my left triceps and make a fist as well. My deltoid is not really functional, besides keeping my shoulder from falling out of socket, which it still does. This transfer never became second nature, like the intercostal nerve (nerves from the ribs) transfer to biceps. I don't think "flex rib" at all to bend my elbow.

      I hope I'm not just rambling here, and this surgery covered by ABC News is similar to what I had done.


      Chris

      Originally posted by spinky88
      Hi,
      i am brand new here, matter of fact this is my first real post. i do not have a sci but i am in a wheelchair with a rather rare disease called RSD. (i posted on another forum to ask if i was welcome here and so far the answers were welcome, so i hope i ok to post! lol ) i am sure the doc is aware of this disease, but probably most of you have never heard of it...my children call it Really Stupid Disease, proper name is Reflex Sympathetic Dystrophy. people can get this disease in one region of their body while others, like me, seem to have it all over. it attacks your sympathetic nervous system, muscular system and circulatory system. i have extremely limited ability to stand as the pain is so severe as well as my right leg is atrophied and deformed from the dystrophy. my disease has attacked my entire right side and is currently on the move over to the left. i have had mirrored symptoms on the left for quite sometime but now they are truly manifesting. rsd is very painful...a chronic pain condition that is only masked with strong narcotics which leave me as a mushbrain, so i have opted to forgo the meds and learn to deal with the pain because i cant deal with spending my life in a drug induced fog.

      many of the 10 points outlined here pertain to my condition too. one of the major problems with rsd is that any surgical procedure can cause the disease to attack the surgical site. no one knows how you get rsd, no one knows why and no one really knows how to treat it and there is no cure. sadly, no real research is being done either because there are not enough patients who suffer from it to use research dollars on this disease.

      the reason i am posting here, is that on the very day i had my last doctors appointment, there was a segment on Good Morning America about a nerve graft to aid paralysis patients. a surgery had been done on a stroke victim and they were reporting on the surgery and the hopes for some manner of recovery of use of his body. this grafting was done with hair. i went to GMA to try to post the link and the video is still up...

      http://abcnews.go.com/search?searcht...om%20hair&type=

      you will want to click on the video of 12/19/2007---Reversing Paralysis from Stroke.

      I was so excited about this new surgery as i was hoping this nerve grafting might be a breakthrough for rsd. i could barely wait for my doc to enter the examing room! i started to tell him and he listened intently and said, i am sorry, of all the things that might be possible for you, this is definitely not one of them. reason being they have to cut nerves to do this and that would make rsd just go bizerk and would be even worse than it is now if that is possible. i have been in my wheelchair for 12 years, so i guess i can stay here a few years longer until someone decides this is a good disease to try to cure.

      however, they do think this is a possible breakthrough for paralysis. now, i do not want to get anyones hopes up for disappointment, but my doc says this is not the first surgery of this type done and he does think it could hold promise for people with sci. and i need to qualify this with his saying there is still much much research to be done.

      i do think that anything that is done that has any amount of success is grounds for hope. i am sure dr. young has heard about this and can offer far more information about this than this video can provide. while this is not and will never be an option for me, if this surgery is successful with this patient, then maybe it will be a new path for those of you who have sci. i just thought you all may be interested in hearing of the procedure.

      Comment


        thank you dr. young. no rush, i will look forward to hearing your thoughts whenever you have time.

        Comment


          Originally posted by Wise Young
          Pam,

          I remember walking all over Congress with you. You are my heroine. Fatigue is a common problem in people with incomplete spinal cord injury and multiple sclerosis. The mechanism is not well understood. However, I know that many people who have MS or SCI and take 4-AP (Fampridine) say that this drug helps reduce fatigue. The fatigue can occur at the axonal level, neuronal level, or muscle level. Let me do some research on this and come back with more details.

          Wise.
          Dr Young you embarrass me, no one has ever told me that! Thank you. I was on a mission that beautiful spring day, focusing on the important conversation with you and the lovely Susan Poon. You both diverted my attention and propelled me forward. Physically, at the end of that day I was done in.

          How does one know if its axonal,neuronal or muscle level?

          My gp did not want to prescribed me 4AP, I will try again soon though,
          Pam

          Comment


            Originally posted by cljanney
            This surgery sounds very similar to some of the procedures I had done for my Brachial Plexus Injury at the Mayo Clinic. If it is, the donor nerves, called Sural nerves, are harvested from the back of both calves (since these nerves are sensory nerves, the only after effect from their being removed is a small patch of numbness on the outside of the ankle about the size of a tennis ball). Then they are grafted to the uninjured or not paralyzed side's C7 nerve and to which ever muscle group(s) is targeted on the paralyzed side. For me it was deltoid, to try and keep my shoulder from falling out of socket. I don't believe the surgeons at the Mayo Clinic are using the whole C7 nerve yet, like they have been doing in India for years, but that may have changed. In my case half the C7, on my uninjured side, was utilized for my injured side's deltoid and the loss of function from my uninjured arm is minimal, slightly weaker triceps and biceps. It took about 18 months before I started getting any signs of innervation. Like most of my different nerve graft surgeries, you have to focus on contracting the original muscles that the nerve was innervated to, before it was rerouted. So for me to move my right (injured) shoulder at all (which is actually very little, about 5 inches from my side/hip at most) I contact/flex my left triceps and make a fist as well. My deltoid is not really functional, besides keeping my shoulder from falling out of socket, which it still does. This transfer never became second nature, like the intercostal nerve (nerves from the ribs) transfer to biceps. I don't think "flex rib" at all to bend my elbow.

            I hope I'm not just rambling here, and this surgery covered by ABC News is similar to what I had done.


            Chris
            Hello Chris,

            My daughter suffered a Brachial Plexus injury at birth, 26 yrs ago. I wonder if its to late for her to have an op like this, she has no formal shoulder joint and is very cautious with it so it will not fall out of place. It is also physically obvious and she has very lopsides shoulders, pain too.

            Years ago we took her to Yale/New Haven Shoulder Arm Center, can you believe they wanted to permenently freeze her shoulder in place? This was from the best in the field, we were shocked and got the heck out of there. They we not doing much in the field with grafts in this area yet.

            Pam

            Comment


              Originally posted by spinky88
              thank you dr. young. no rush, i will look forward to hearing your thoughts whenever you have time.
              I just posted an article on the subject at /forum/showthread.php?p=789209#post789209

              Wise.

              Comment


                Originally posted by Wise Young
                I am not sure what you mean by plugging of blood vessels. This would not happen if the cells are injected directly into the spinal cord and not into the blood vessels. There is no risk of blindness that I am aware of.

                In my opinion, the most likely risks of cell transplant to the cord are
                • infection (from a contaminated preparation)
                • abnormal growth or tumor formation by the cells.
                • inflammation from immune rejection or other reactions to the cells.

                Wise.
                Hi Dr.Wise

                I do not know in the treatment which the cells you used ?

                And if you use the mesenchymal stem cells, I also do not know that MSCs can become a tumor or not ?

                I think there is no consistent reports about it.

                And I get a idea, why not just use the growth factors from MSCs to treat the spinal cord injury ?

                Comment


                  Pam,
                  I don't want to high jack the thread but I'll give a quick response and feel free to PM me with any other questions about BPIs (Brachial Plexus Injuries).

                  Problems with shoulder instability and constant dislocation are common place for folks w/this injury. Believe it or not, shoulder fusion is one of the best options out there for those looking to regain mobility in the rest of their body due to the "rag doll" shoulder instability holding it hostage. Not being able to run, jump, dance or any other abrupt movement when the rest of your body functions fine is an unacceptable condition in my opinion. I am seriously contemplating amputation to free the ball and chain my arm has become to the rest of my body, but I will fuse my shoulder first to see if that helps. I know of one BPI athlete who said fusing his shoulder was the best thing he ever did. I don't believe a muscle transfer is a viable option for the shoulder area due to the complex structure and mechanics of the shoulder.

                  Your daughter should get to a specialist and see though, you never know. There are only a few places I would recommend to get top notch help with this kind of injury. The Brachial Plexus Team at the Mayo Clinic in Rochester, MN or Dr Belzberg at Johns Hopkins in Maryland. I don't know if you or your daughter have checked out this website, ( www.UBPN.org ) but its focus is on injuries like your daughter and I have.

                  Best of Luck,
                  Chris




                  medical resource page...
                  http://www.ubpn.org/medicalresources/us-bpi.html



                  Originally posted by Princess "Leia"
                  Hello Chris,

                  My daughter suffered a Brachial Plexus injury at birth, 26 yrs ago. I wonder if its to late for her to have an op like this, she has no formal shoulder joint and is very cautious with it so it will not fall out of place. It is also physically obvious and she has very lopsides shoulders, pain too.

                  Years ago we took her to Yale/New Haven Shoulder Arm Center, can you believe they wanted to permenently freeze her shoulder in place? This was from the best in the field, we were shocked and got the heck out of there. They we not doing much in the field with grafts in this area yet.

                  Pam

                  Comment


                    Originally posted by cljanney
                    Pam,
                    I don't want to high jack the thread but I'll give a quick response and feel free to PM me with any other questions about BPIs (Brachial Plexus Injuries).

                    Problems with shoulder instability and constant dislocation are common place for folks w/this injury. Believe it or not, shoulder fusion is one of the best options out there for those looking to regain mobility in the rest of their body due to the "rag doll" shoulder instability holding it hostage. Not being able to run, jump, dance or any other abrupt movement when the rest of your body functions fine is an unacceptable condition in my opinion. I am seriously contemplating amputation to free the ball and chain my arm has become to the rest of my body, but I will fuse my shoulder first to see if that helps. I know of one BPI athlete who said fusing his shoulder was the best thing he ever did. I don't believe a muscle transfer is a viable option for the shoulder area due to the complex structure and mechanics of the shoulder.

                    Your daughter should get to a specialist and see though, you never know. There are only a few places I would recommend to get top notch help with this kind of injury. The Brachial Plexus Team at the Mayo Clinic in Rochester, MN or Dr Belzberg at Johns Hopkins in Maryland. I don't know if you or your daughter have checked out this website, ( www.UBPN.org ) but its focus is on injuries like your daughter and I have.

                    Best of Luck,
                    Chris




                    medical resource page...
                    http://www.ubpn.org/medicalresources/us-bpi.html
                    Thanks Chris,

                    Freezing her shoulder at age 13 seemed so radical to us at the time and we felt time would yield a new option. She has really compensated quite well but during adolescence and growth spurt she experienced pain. Her bones were growing quicker than the muscles and nerves in the shoulder. And from what many doctors told us she was one of the lucky ones to have as much use as she does, still she is always cautious. Anyhow, we all decided it would be better to wait as adulthood approached and let her decide what the optioms would be then.

                    The link is great and she found her way to it several years ago and left it at that. She was comforted in knowing how many others are out there with the same issues. I will send her all the info and doctors the link.

                    I would be most iterested in hearing if you do decide to freeze you shoulder.

                    Thanks,
                    Pam

                    Comment


                      hey i'm just glad to be alive!!!

                      Comment


                        and nice to meet you all...

                        Comment


                          Originally posted by Princess "Leia"
                          Hello Chris,

                          My daughter suffered a Brachial Plexus injury at birth, 26 yrs ago. I wonder if its to late for her to have an op like this, she has no formal shoulder joint and is very cautious with it so it will not fall out of place. It is also physically obvious and she has very lopsides shoulders, pain too.

                          Years ago we took her to Yale/New Haven Shoulder Arm Center, can you believe they wanted to permenently freeze her shoulder in place? This was from the best in the field, we were shocked and got the heck out of there. They we not doing much in the field with grafts in this area yet.

                          Pam
                          Fusing the shoulder means fixing the humerus to the scapula - usually a little abducted and flexed. THat often gives folks much more function than they would have without the fusion. The scapula can move pretty well and they can often get that arm up to do most things you would want to do as a result. It just takes a "2 hinge" system and turns it into a simpler "1 hinge" system. Other options late out are free muscle transplants. Of course it depends on what function your daughter has in that arm and what you want to try to restore.

                          Comment


                            Originally posted by skippopotamus
                            Isildur, don't be discouraged. The first point is mainly that the clock can't be turned back. A cure for spinal cord injuries can't include age reversal.
                            Sure, that would be obvious, BUT assuming that an injury is only recent (maybe no more than 6 months) is it likely that a FULL cure is going to be available. Like when a person breaks an arm or a leg.
                            Unfortunately, I know, the people who are interested in a REAL cure are chronic sufferers. I am a chronic stroke victim, and I KNOW that even were I able to get a "cure" for the brain damage, I could not easily recover my original strength, dexterity & agility, (from 12 years ago) but it would be one hell of a lot easier than it is, NOW, trying to recover even a SMALL portion of what I used to do.

                            Comment


                              Keep up the good work Dr. wise. But I hope you are completely wrong about the eight years third-generation trials. As much as I would love for the USA to find a repair for sci, if it's going to take that long I hope someone somewhere else gets it going. C3 quad sucks. Instead of calling it cure how about calling it a repair. You repair a heart, you fix a broken bone. It's never the way it was but at least it's functional. There has to be the way to make this happen faster.
                              keiffer66

                              Comment


                                Xcell Center In Cologne, Germany

                                My son has been accepted as a patient at X-Cell Center in Germany. Bone Marrow stem cells are used and injected into spinal cord. Can anyone tell me if this is a legitimate clinic? They apparently have POC's in North America, Europe, Asia, Africa, etc. My son's injury occurred in 2006 from an auto accident. He can walk with a walker and braces but has lot feeling in lower body. No bladder or bowel control. His spirits and determination are very high.

                                Comment

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