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Thread: Is there any trial or treatment for our kind of injury?

  1. #11
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    As for clinical trials (the first ones on sci); I believe one are aiming at the lesser of the evils first, i.e. mid thoracic injuries where few peripheral nerves and nerve roots are located and also to avoid direct interference in lower thoracic injuries where CPGs etc. are located and also to avoid additional problems with cervical injuries as for interfering with breathing control and also complicated areas as UMN and LMN areas. Remember the first steps in trial settings are to build proof of principles and effectiveness of these, hence one are aiming at areas in the spinal cord where these principles best can be obtained, and also to avoid further damage, thus on mid thoracic injuries one also are focusing on neurological complete injuries. Then when these proof of principles and effectiveness of these are convincing one also for sure will include other parts of the spinal cord. As for research; remember that not all basic sci research has clinical trials as their main argument, much of this research in fact are done to better have a understanding of the spinal cord and the CNS as a whole, this research then of course looks at all the physiological and anatomical structures of the spinal cord, for gaining more knowledge, like for example quite a bit of research is also carried out on the brainstem, -motoneurons and interneurons are also for example studied quite a bit as a area of research itself. Also, as for areas mentioned by some above, professor Raisman in the U.K. for example is studying brachial plexus injuries, damages to cervical nerve roots, which also can have some to say as for LMN injuries. I think there is some good research ongoing different places in the world, which in time hopefully can materialize in many clinical trials on different types of spinal cord injuries. Anyhow, that’s what I think.

  2. #12
    Senior Member Foolish Old's Avatar
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    Quote Originally Posted by medic1 View Post
    Isnt the evidence in the fact that I have been unable to find a single clinical trail/experiment/research team, that has accepted a spinal cord injury that is low. They all seem to be cut off higher up than my injury. Not trying to argue just trying to figure things out. If there are any clinical trials etc for low level injuries I would love to hear of them!
    Again, I don't think this is because of researchers prioritizing their investigations according to need. It is just that the parameters of the trials you explored excluded your Li level - which is in the region where the spinal cord ends. No mystery that spinal cord research would want subjects whose level is a little higher.
    Foolish

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  3. #13
    Quote Originally Posted by Leif View Post
    As for clinical trials (the first ones on sci); I believe one are aiming at the lesser of the evils first, i.e. mid thoracic injuries where few peripheral nerves and nerve roots are located and also to avoid direct interference in lower thoracic injuries where CPGs etc. are located and also to avoid additional problems with cervical injuries as for interfering with breathing control and also complicated areas as UMN and LMN areas. Remember the first steps in trial settings are to build proof of principles and effectiveness of these, hence one are aiming at areas in the spinal cord where these principles best can be obtained, and also to avoid further damage, thus on mid thoracic injuries one also are focusing on neurological complete injuries. Then when these proof of principles and effectiveness of these are convincing one also for sure will include other parts of the spinal cord. As for research; remember that not all basic sci research has clinical trials as their main argument, much of this research in fact are done to better have a understanding of the spinal cord and the CNS as a whole, this research then of course looks at all the physiological and anatomical structures of the spinal cord, for gaining more knowledge, like for example quite a bit of research is also carried out on the brainstem, -motoneurons and interneurons are also for example studied quite a bit as a area of research itself. Also, as for areas mentioned by some above, professor Raisman in the U.K. for example is studying brachial plexus injuries, damages to cervical nerve roots, which also can have some to say as for LMN injuries. I think there is some good research ongoing different places in the world, which in time hopefully can materialize in many clinical trials on different types of spinal cord injuries. Anyhow, that’s what I think.
    So, then in general...wouldn't a lot of these problems you've pointed out be overcome if more work was done with PTEN? I'm referencing the video that rjames posted this morning from Reeve Irvine Research Center...(not talking about clinical trials necessarily...more the location of the injury question since they say recovery of "three levels").
    Last edited by GRAMMY; 02-16-2011 at 01:03 PM.

  4. #14
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    Quote Originally Posted by Foolish Old View Post
    Again, I don't think this is because of researchers prioritizing their investigations according to need. It is just that the parameters of the trials you explored excluded your Li level - which is in the region where the spinal cord ends. No mystery that spinal cord research would want subjects whose level is a little higher.
    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.

  5. #15
    i am a level t12- l1 have had some new sensations no help from doctors my coard was stretched and the l 1 vertabrae was destroyed in auto accident i try to follow the latest news on our plight so far i c adult stem cells working in panama city panama but not much other out there the reaserch they are doing in the united states is for fresh injuries and have not seen no testiments on that subject yet i believe that there is hope for all sci but maybe not tell we are all ready for the rest home lol best we can do is keep hope alive and not turn a blind eye on any new treatments

  6. #16
    Senior Member Foolish Old's Avatar
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    Quote 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

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  7. #17
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    [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.

  8. #18
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    Quote 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.

  9. #19
    Quote 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...

  10. #20
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    Quote 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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