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

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

    As i have compression fracture at L1 so can some one or Wise tell that if there is any trial of stem cell or something else forold lumbosacral injuries with compression?

    What is the future of Cure for old lumbosacral injuries with compression specially when patient like me is walking very well like normal person?

    Will decompression be needed before any treatment? How treatment will be managed?

  • #2
    i wish they had something, i would settle for the pain reduction. I walk with a big limp and i leg is atrophied, but i was able to get rid of the AFO after 7 years and move down to an ankle brace, i still need the afo when it is snowy and icy as the ankle brace , even though it is the strongest type, my ankle and foot still collapse to the left. i found that out last week when i tried to walk in the snow with strong anti slip things strapped onto my boot.
    the pain and side effect are really ruining me.
    cauda equina

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    • #3
      I had a L1 burst fracture. Same type of injury , I walk pretty well but still use crutches and chairs to get around. As far as I know and the research I have done we are too low of injury to be of any priority in research.

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      • #4
        Originally posted by medic1 View Post
        we are too low of injury to be of any priority in research.
        I wouldnt go that far. Lower lesions will likely benefit from the good work the ALS and SMA scientists are doing with regards to neuronal replacement. So all is not lost.

        I guess what we will be looking at is the convergence of therapies (CNS injury therapies and neuronal replacement therapies) which will then provide hope for lower lesions.

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        • #5
          Fly remember the similarites that Wise provided on all aillments; ms, als, cns, and spinal injuries. He clearly stated that cures or treatments for one will benefit others as well. So we must agree with your assessment. Als and acute trials are moving along nicely; we need to see positive outcomes. Slow, but cureently moving.

          keeping on

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          • #6
            Originally posted by Fly_Pelican_Fly View Post
            I wouldnt go that far. Lower lesions will likely benefit from the good work the ALS and SMA scientists are doing with regards to neuronal replacement. So all is not lost.

            I guess what we will be looking at is the convergence of therapies (CNS injury therapies and neuronal replacement therapies) which will then provide hope for lower lesions.
            I guess I was refering to therapy trials and stem cell research trials. Our injuries are so low and most have a fair amount of function that the priority is to get higher ups use of arms and hands so that they can live more independently. Therefore, most trials and experimental treaments are for higher ups. We will benefit from the research, its just that they look at us and figure we are pretty good the way we are.

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            • #7
              Originally posted by medic1 View Post
              I guess I was refering to therapy trials and stem cell research trials. Our injuries are so low and most have a fair amount of function that the priority is to get higher ups use of arms and hands so that they can live more independently. Therefore, most trials and experimental treaments are for higher ups. We will benefit from the research, its just that they look at us and figure we are pretty good the way we are.
              Without convincing evidence to the contrary, I would strongly doubt that level of function (need?) plays much of a role in deciding what areas of research get the juice.
              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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              • #8
                Agreed.

                I did raise a point a few weeks ago suggesting that lower level incompletes should'nt be disregarded as low priority as they are potentially "quick wins" - many who have been working hell for leather on their bodies for umpteen years for small amounts of incremental functional return. These individuals are likely to be well-versed in rehabilitation techniques - self-starters if you will. Although high-level injuries will be an obvious priority maybe the candle can be burned at both ends to increase productivity.

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                • #9
                  Originally posted by Fly_Pelican_Fly View Post
                  Agreed.

                  I did raise a point a few weeks ago suggesting that lower level incompletes should'nt be disregarded as low priority as they are potentially "quick wins" - many who have been working hell for leather on their bodies for umpteen years for small amounts of incremental functional return. These individuals are likely to be well-versed in rehabilitation techniques - self-starters if you will. Although high-level injuries will be an obvious priority maybe the candle can be burned at both ends to increase productivity.
                  Actually, it is oppisite from what I understand. The higher-ups will be the ones that will have a quicker recovery because of where the injury is. I know it sounds backwards but the lower u get on the spinal cord the more complicated things become.

                  The higher ups have a clearer idea of where the problem is and the amount of spinal roots etc are far less. The lower you go on the spinal cord the more spinal roots there are and you have to remember the lower injuries are dealing with the spinal roots, caude equana, and the conus. All three of these can be involved for lower injuries making it more complicated as to what is injured and how badly it is injured.

                  Believe me I hold out hope that something will come along for all of us. Maybe Wise can clear this up a bit as to where we stand/sit on the research with our levels of injury.

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                  • #10
                    Originally posted by Foolish Old View Post
                    Without convincing evidence to the contrary, I would strongly doubt that level of function (need?) plays much of a role in deciding what areas of research get the juice.
                    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!

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                    • #11
                      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.

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                      • #12
                        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

                        "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

                        Comment


                        • #13
                          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, 01:03 PM.
                          http://spinalcordresearchandadvocacy.wordpress.com/

                          Comment


                          • #14
                            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.

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                            • #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

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