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    #16
    Originally posted by medic1 View Post
    I guess you just proved what I was saying. A lot people dont look at us as being spinal cord injured or not spinal cord injured enough. By you saying "No mystery that a spinal cord research would want subjects whose level is a little higher", you backed up the arguement that I have been making. If there was no prioritizing according to need then there would be no cut off of injury level. It would simply be if you have a spinal cord injury you are accepted into the trial.

    Dont get me wrong I understand completely the reasoning why and agree with leif the middle of the road theory they use.
    At the risk of being painfully redundant, I don't think I'm getting my point across. They can't use you in a spinal CORD trial if your level is below the CORD. This has NOTHING to do with NEED. I also have a low level. The reason so little is being done in this area is due to the complexity of the problem, not because we are perceived by researchers as having less pressing need.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

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      #17
      [QUOTE=Foolish Old;1324464]At the risk of being painfully redundant, I don't think I'm getting my point across. They can't use you in a spinal CORD trial if your level is below the CORD. This has NOTHING to do with NEED. I also have a low level. The reason so little is being done in this area is due to the complexity of the problem, not because we are perceived by researchers as having less pressing need.[/QUOT


      Maybe this is why we are not getting each other. My Spinal cord is injured, even at the L1 level. I have spinal cord involvement, I am a paraplegic. I cath have a bowel program, am still paralyzed from the waist down in the back of my legs. Obviously if I had no spinal cord injury I wouldnt be useful in a spinal cord injury trial. I can understand u are feeling redundant, I am too. As I stated in my earlier post, the lower level injuries are more complex and therefore are not being looked at right now because they involve not only the spinal cord but the caude equana, and the conus. I feel like we are saying the same thing and somehow missing one another. My injury caused a smooshing ( ya I know very big medical term here) that involves all three areas.

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        #18
        Originally posted by Foolish Old View Post
        At the risk of being painfully redundant, I don't think I'm getting my point across. They can't use you in a spinal CORD trial if your level is below the CORD. This has NOTHING to do with NEED. I also have a low level. The reason so little is being done in this area is due to the complexity of the problem, not because we are perceived by researchers as having less pressing need.
        Agree as for spinal cord injury trials (as we can see the early kick-offs as of now) aiming at repairing the damaged spinal cord itself. But I also agree with medic1 that LMN injuries and also specifically for example Cauda Equina Syndrome (injuries) which might have a low prioritizing status/level in the typical ‘brain research science community’ isn’t ‘prioritized‘, -the reason might be that such injuries (CES) isn’t part of the CNS itself, thus not attracting the best brains as for research and science focus, and more leave this types of injuries - more or less - up to the typical clinician community, to try to help, by traditional means (worst case; i.e. diapers, catheters and pain administration). This under focus on such injuries (i.e. CES) are also clearly shown by the very low prioritizing (or total lack of) by most authorities (government etc., national or bilateral efforts) when discussing neurological prioritizing efforts for therapies for CNS (and related) injuries - a side note on this is also that sci, as well, itself, ‘the cord’, is way under focused on - in such debates, -where typical university/academia leaders where CNS are studied, -old former brain scientists often are in position to set the agenda - brain research is important, don’t misunderstand me -but I think this in all as discussed here in this thread is very important to understand. Important known issues are raised as for discussions in this thread. Guess what I’m saying is that there is a ‘close to vacuum’ efforts on sci research and sci research on surrounding sci injuries, as a whole. We all can help to fix all this, to have our scientifically community, our clinicians and our authorities (govt. etc.), to make all sci and sci related issues a priority. For example, -I have had several calls when people are asking for example where is Cauda Equina in all this. -What shall one tell? Also, LMN and UMN injuries (sci) might require motoneuron transplants, very difficult I hear, but great focus (at least some) are given to this field as well, and specifically on this, we can say, thank you to our typical brain researchers.

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          #19
          Originally posted by Leif View Post
          Agree as for spinal cord injury trials (as we can see the early kick-offs as of now) aiming at repairing the damaged spinal cord itself. But I also agree with medic1 that LMN injuries and also specifically for example Cauda Equina Syndrome (injuries) which might have a low prioritizing status/level in the typical ‘brain research science community’ isn’t ‘prioritized‘, -the reason might be that such injuries (CES) isn’t part of the CNS itself, thus not attracting the best brains as for research and science focus, and more leave this types of injuries - more or less - up to the typical clinician community, to try to help, by traditional means (worst case; i.e. diapers, catheters and pain administration). This under focus on such injuries (i.e. CES) are also clearly shown by the very low prioritizing (or total lack of) by most authorities (government etc., national or bilateral efforts) when discussing neurological prioritizing efforts for therapies for CNS (and related) injuries - a side note on this is also that sci, as well, itself, ‘the cord’, is way under focused on - in such debates, -where typical university/academia leaders where CNS are studied, -old former brain scientists often are in position to set the agenda - brain research is important, don’t misunderstand me -but I think this in all as discussed here in this thread is very important to understand. Important known issues are raised as for discussions in this thread. Guess what I’m saying is that there is a ‘close to vacuum’ efforts on sci research and sci research on surrounding sci injuries, as a whole. We all can help to fix all this, to have our scientifically community, our clinicians and our authorities (govt. etc.), to make all sci and sci related issues a priority. For example, -I have had several calls when people are asking for example where is Cauda Equina in all this. -What shall one tell? Also, LMN and UMN injuries (sci) might require motoneuron transplants, very difficult I hear, but great focus (at least some) are given to this field as well, and specifically on this, we can say, thank you to our typical brain researchers.
          So I gather by your post that the PTEN wouldn't impact the lumbar Cauda Equina injuries at all since it's CES not CNS. Correct?
          It's kind of confusing since they also have axon damage.
          Correct?
          Maybe I'm getting too confused...
          http://spinalcordresearchandadvocacy.wordpress.com/

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            #20
            Originally posted by GRAMMY View Post
            So I gather by your post that the PTEN wouldn't impact the lumbar Cauda Equina injuries at all since it's CES not CNS. Correct?
            It's kind of confusing since they also have axon damage.
            Correct?
            Maybe I'm getting too confused...
            I have to read that, reply later. PS I'm no scientist, so don't take any as proof I post, I only talk here on cc on behalfe of what I think, as a person.

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              #21
              Btw, some thoracic mid sci injuries also most likely will require motoneuron transplantations, or other ways to create such. For example; my sci will, -dead motoneurons in the bulls eye centre of the cord is a 100 % damaged (my case), not only allocated to axons. Guess, although I have a thoracic mid injury, will be way back in the cure queue - but that is fine, more than fine, since I’m not into all this for me, never have been btw. I just love science that has the possibility to help. -We really need to try to help sci science in this early start of trials and so on to try to se where we all can help out to try to help science and the clinicians, -just one little index finger working better on a quad, would have made my day and joys of days forever. We as a sci community - the ones of us that can - should more be much more empathetic and also work for these of us that can not (althogh some quads here on cc are doing much more as for this than many paras)- since we all know sci more or less - to help the field and hopefully all of us.

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                #22
                Thanks Leif, I appreciate it. Will wait for you to see the PTEN video that rjames posted. It appeared from the video that they were indeed including the low lumbar injuries. So, that's kinda where my question mark was. (I know you're not a doc, but I'm always interested in everyones take on various research results and where they may fit into future therapies). Thanks for your posts!
                http://spinalcordresearchandadvocacy.wordpress.com/

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                  #23
                  there was mention of how if you inject stem cells into the spinal cord that they would just fall into the cauda equina. I have had that on my mind since then. wouldnt it be good to get stem cells there if that is where you are injured? im interested in seeing if the cells do actually fall into the cauda equina, and what the effects would be for someone injured there.

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                    #24
                    Originally posted by jody View Post
                    there was mention of how if you inject stem cells into the spinal cord that they would just fall into the cauda equina. I have had that on my mind since then. wouldnt it be good to get stem cells there if that is where you are injured? im interested in seeing if the cells do actually fall into the cauda equina, and what the effects would be for someone injured there.
                    Jody, I agree, and I believe what you might be thinking of is the Kerr D. study http://www.hopkins-ice.org/neuro/int/kerr.html a complicated animal study, involving several arrays of; hESC, growth factors, ‘luring chemicals’ to attract nerve growth in/from the bigger muscles on lab animals hind limbs. This combination study in fact - as I see it - plowed the cure understanding of combination therapies on sci - pity though, none lab’s seams capable on replicating this or focusing on it (very complicated and expensive, few can do this), although most scientists probably deep down think it is cool. But then again, what is cool sci efforts?

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                      #25
                      I also have an L1 burst fracture. I walk with afo's on both legs brcause of drop feet, I can "walk" with help from walkers, arm crutches. My problem is balance. I was wondering since you said you walk pretty well, is how did you do it? I should also tell you, if you had'nt guess, I'm new on this site. I'd appreciate any feedback, thanks.

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                        #26
                        Originally posted by kathyk View Post
                        I also have an L1 burst fracture. I walk with afo's on both legs brcause of drop feet, I can "walk" with help from walkers, arm crutches. My problem is balance. I was wondering since you said you walk pretty well, is how did you do it? I should also tell you, if you had'nt guess, I'm new on this site. I'd appreciate any feedback, thanks.
                        I usually get around the house without assistance. I have orthotics that help a lot. I use night splints at night. I use crutches out of the house along with my wheelchair for longer distances. I cant walk for long periods or stand for too long.

                        My right side is weaker than my left so I tend to walk as if I have a bit of a limp. I wear an SI belt to stablize my hips. It helps tremendously with balance and pain from having weak hip extensors and flexors.

                        I am thankful for all I have regained. Unfortuanetly, going on 8 years since injury, I can already feel my body breaking down. More pain, aches, more dependent on crutches and having to use my wheelchair more often.

                        By the way Welcome kathyK, sorry u had to find us but glad that you did.

                        I concentrate on doing my streches and make sure I get exercise. We have to try and keep moving to keep what we have. We also have to walk the line of not over doing because we will pay for it. If I over extend myself I will end up in bed for days in pain unable to move.

                        If you have any specific questions feel free to message me.

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                          #27
                          medic1. I wish more would focus on injuries like thath. I was in a government arranged neurological advisory board not long ago, and there I addressed such of you’re concerns. To be included. To be included/part of sci - is sci.

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                            #28
                            Originally posted by medic1 View Post
                            I wear an SI belt to stablize my hips. It helps tremendously with balance and pain from having weak hip extensors and flexors.
                            I'm curious on this.... I have very weak glutes which is the main reason my walking is crap and painful (walk with one AFO, one walking stick). What does a SI belt do?

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                              #29
                              Thank u so much all friends for discussing this issue.

                              Being L1 compression patient i can walk very easily like normal person but have lost bladder bowel and sexual function.

                              Dont know what doctors or researchers will do with compression injuries?

                              Comment


                                #30
                                Originally posted by medic1 View Post
                                I usually get around the house without assistance. I have orthotics that help a lot. I use night splints at night. I use crutches out of the house along with my wheelchair for longer distances. I cant walk for long periods or stand for too long.

                                My right side is weaker than my left so I tend to walk as if I have a bit of a limp. I wear an SI belt to stablize my hips. It helps tremendously with balance and pain from having weak hip extensors and flexors.

                                I am thankful for all I have regained. Unfortuanetly, going on 8 years since injury, I can already feel my body breaking down. More pain, aches, more dependent on crutches and having to use my wheelchair more often.

                                By the way Welcome kathyK, sorry u had to find us but glad that you did.

                                I concentrate on doing my streches and make sure I get exercise. We have to try and keep moving to keep what we have. We also have to walk the line of not over doing because we will pay for it. If I over extend myself I will end up in bed for days in pain unable to move.

                                If you have any specific questions feel free to message me.
                                medic1, what is this si belt? balance is an issue for me also due to one sided weakness.
                                its the entire side, 1
                                hand too, so gripping crutches and canes is difficult. I use the heftier trekking poles with the wide loops that go over your hands. I have stability probs at the waist though, spasticity, and spasms that affect balance. I ask though because my si ligaments were torn on one side and there is movement in my pelvis that cause some balance issues. I google, but see nothing. is there a brand?

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