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why do incompletes fall in the grey zone of a cure ??

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    #16
    Thank you, good stuff.

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      #17
      Thank you everyone... really great and helpful info.
      Mary
      "Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not." ~ Dr. Suess

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        #18
        Dr. Wise,
        In the past you have indicated the benifits of aquatherapy. Have there been any research on aquatherapy treatment in muscle atrophy and improve ambulations.

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          #19
          Originally posted by Wise Young
          I have avoided commenting on this topic because it was not clear to me that the complaint was that there are no therapies for incomplete spinal cord injury or that there is less emphasis on treatments for incomplete injuries. In any case, there are therapies for incomplete spinal cord injury and clinical trials that are testing therapies in people with incomplete spinal cord injury.

          Treatments that improve incomplete spinal cord injury or that were/are in clinical trials involving incomplete spinal cord injury include:
          • Weight-supported ambulation. Several studies from Europe indicate that weight-supported ambulation on treadmill improves recovery of independent locomotion in people with chronic incomplete spinal cord injury. As many as 70% of people (who have incomplete chronic spinal cord injury and who did not walk before the training) improved walking after several months of intensive weight-supported ambulation training. A randomized controlled study in the United States, however, compared weight-supported treadmill training with "standard rehabilitation" during the first year after injury and found that over 80% of both groups recovered ability to walk, compared to historical data indicating that only about 45% of people with incomplete spinal cord injuries recovered walking. This suggests that other types of exercise besides weight-supported ambulation can facilitate walking recovery.
          • Biofeedback therapy. This is a therapy where the patient would use electromyographic recordings from muscles to train their motor systems. This is a technique that is most effective in patients with incomplete spinal cord injury. It is typically not applied to people who have no motor control.
          • Decompression. For many years, surgeons would decompress only those patients who have incomplete spinal cord injury, saying that it would not be useful for patients with "complete" spinal cord injury. In general, if somebody has compression of their spinal cord, surgeons are much more likely to decompress the spinal cord, both acutely and chronically.
          • 4-aminopyridine. This is a drug that improves conduction of demyelinated axons. Several phase 2 trials showed that the drug improves function in patients with incomplete spinal cord injury but the effects occurred in only about a third of patients and varied a great deal, depending presumably on whether demyelination was present and what surviving axons were present in the spinal cord. Two phase 3 trial, however, showed that 4-aminopyridine did not significantly reduce spasticity in the patients. Clinical trials in multiple sclerosis are continuing.
          • HP184. This is a multicenter trial being carried out by Aventis in multiple centers in several countries. Like 4-aminopyridine, this drug improves conduction of demyelinated axons. There have been a number of anecdotal reports that this drug is improving sensation and even motor function.
          • Monosialic ganglioside (GM1). A trial of 800 patients in the late 1990's reported that this drug if started shortly after injury and continued for 6 weeks will accelerate recovery of function in patients with incomplete spinal cord injuries. The final extent of recovery at one year after injury, however, did not differ significantly from untreated control groups.
          • Methylprednisolone. A trial of this drug started within 8 hours after injury and continued for 24 hours showed that patients with incomplete spinal cord injuries recovered 57% of their motor if they did not receive the drug and 75% if they did. A second clinical trial compared a 24-hour course of methylprednisolone, a 48-course of the drug, and a 48-hour course of tirilazad mesylate following an initial bolus of methylprednisolone. The trial showed that people who were treated within 3 hours after injury had similar recovery in all three groups. However, those patients that received a 24-hour course of methylprednisolone between 3-8 hours after injury did not recover as well as those that received a 48-hour course of the drug. Likewise, tirilazad mesylate treated patients that were treated between 3-8 hours after injury did not do as well as those who had received a 48-hour course of the methylprednisolone. For that reason, the current recommendation is to give methylprednisolone for 24 hours if it can be started within 3 hours and 48 hours if it is started between 3-8 hours after injury. Beyond 8 hours, it is not recommended.
          • OEG transplants. Dr. Hongyun Huang has treated many patients with incomplete chronic spinal cord injury with fetal olfactory ensheathing glial transplants. Although the current count is not clear, at least 40% of over 600 patients with spinal cord injury that he has treated are chronic incomplete spinal cord injury patients. He has seen significant improvements in sensory recovery and even walking recovery in some patients, but this is not a controlled or blinded study. It is unclear whether the recovery in incomplete patients could be definitively attributed to the transplants or the fact that the patients tried harder or had more rehabilitation after the surgery. Also, long term followups are not available in a majority of the patients. Note that Dr. Carlos Lima in Portugal has also been transplanting patients with spinal cord injury but a majority of his cases are complete although he is now beginning to treat incomplete patients. I also believe that the Russians neurosurgeons in Moscow and Novosibirsk have been accepting patients with incomplete spinal cord injury. Likewise, I believe that the bone marrow transplant trials being held in Turkey are taking patients with incomplete spinal cord injury.


          There are more examples of other therapies but I want to comment that some of the reasons why doctors have been choosing to include only "complete" spinal cord injury patients in studies such as the Proneuron trial, the cethrin trial, and others is because of two reasons. First, they believe that complete patients have less to lose than incomplete patients. Second, incomplete spinal cord injury patients tend to recover anyway after injury and the recovery is variable. Therefore, particularly in non-controlled clinical trials, it is not possible to distinguish between spontaneous recovery and treatment-induced recovery in patients with incomplete injuries. Therefore, many of the initial clinical trials that are supposed to assess safety and feasibility have chosen to utilize only complete patients. I think that most phase 3 clinical trials have and will continued to include patients with incomplete spinal cord injuries.

          Wise.
          But how can we get those therapies when the doctors don't know about them. I have tried to reach the best doctor in Norway, Niels Hjeltnes, and I am not able to get in contact because he is out in permission all the time. I have been in the SCI hospital where he works so many times now but the doctors there do not know anything about SCI and ageing. It is very frustrating, seems like I know more than the doctors there. I feel that they do not take me seriously and they think I am getting more and more lazy. So instead of supporting me, they are getting angry. Like I have said before, I am 36 years post and loosing more and more function and they simply don't care. I have seen Hjeltnes five years ago when I started to loose function and they haven't done anything. They don't even believe in SCI and aging.
          TH 12, 43 years post

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            #20
            Originally posted by woman from Europe
            But how can we get those therapies when the doctors don't know about them. I have tried to reach the best doctor in Norway, Niels Hjeltnes, and I am not able to get in contact because he is out in permission all the time. I have been in the SCI hospital where he works so many times now but the doctors there do not know anything about SCI and ageing. It is very frustrating, seems like I know more than the doctors there. I feel that they do not take me seriously and they think I am getting more and more lazy. So instead of supporting me, they are getting angry. Like I have said before, I am 36 years post and loosing more and more function and they simply don't care. I have seen Hjeltnes five years ago when I started to loose function and they haven't done anything. They don't even believe in SCI and aging.
            Dear WEF,

            I know that it is frustrating. I have not been to Scandinavia recently (except for Copenhagen a number of years ago) and so don't know much about what is happening there. I am doing my best to spread the word, speaking at clinical meetings attended by clinicians. Here are several upcoming spinal cord injury meetings that I will be attending in the next six months.

            • Nordic Spinal Cord Society meeting in Bergen, Norway (September 7-10). I will be in there and will talk to Nils Hjeltnes. If you have the time to travel and go, you can see the clinicians and scientists who are most interested in clinical trials.

            • Institute Guttman in Barcelona is holding the XVII Technical Workshop in Barcelona, Spain (October 20-21). I will be speaking there.

            • Neurotrauma Society meeting in Washington DC (November 10-11, Omni Sheraton). I will be there.

            • The International Spinal Cord Injury Trials and Treatments (ISCITT) Symposium in Hong Kong (December 17-20). http://www.iscitt.org/

            • The Fourth World Congress for Neurorehabilitation in Hong Kong (February 12-16). http://www.wcnr2006.com/

            Wise.

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              #21
              Wise,
              I have tried just about all the therapies ,you mentioned and about 5 that would be considered holistic medicine.The weight supported ambulation, I did at Healthsouth. It was great but it took them 20 minutes to get me into the harness and do the setup,then I had 30 minutes on the autoambulator treadmill 3x a week for 2 months. Total walking weight supported was 30% at start and 62% of my weight after 2 months with exercise at home and in pool. An hour and 1/2 a week isn't enough and Medicare wanted to cut my therapy after 1 month and I did get 2 months.In 1968, I was in rehab for 7 months and had 2, 3 hour sessions a day. If I had the same accident today, I have no doubt I would have been discharged in a wheelchair and left to my own devices.The present system sucks and getting the therapies you mentioned on a rigid daily schedule really doesn't exist,unless you go to a Project Walk and can afford the thousands of Dollars that insurance won't pay.At this time in my life, I know that my nerves and muscles aren't firing with response the way they did when I was a young incomplete.I see cell transplant as my only option to maybe get the nerve and interaction of muscle response that I need to get me on my feet again.Your honesty and tireless efforts are so mich appreciated, and have always inspired me to keep my hopes alive.

              Mike

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                #22
                Originally posted by mikek
                Any incomplete's agree with me ?? I certainly want to be out of this wheelchair and hope all of us will someday.
                I’m not sure if I completely agree with you. As I understand there are some clinical trials starting in Finland next year for treating Alzheimer, those are not “complete” when it comes to the brain, and I guess we can refer to them as well as “incomplete”. I understands that there is ongoing other therapies studies as well for partial fixing of some brain damages. When it comes to the spinal cord I guess it depends on what the “cure” will be. If it is a kind of medium that will be injected to the cord I believe it will work as much on incomplete as it will work on complete. If we compare to a car engine with no lubricant oil on it at all, we have to fill it completely up, if the engine just needs a litre of oil its just to fill up that volume. Am I right here? It’s just a matter to have the snowball rolling and get some speed; as it accelerates it will get more speed and get bigger. The only problem here as I see it is political willingness to have this started and move on. But I completely agree with you on the wheelchair part and hopes that both you and others will.

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                  #23
                  Leif,
                  You really do agree with me as I was only talking about Spinal Cord Injuries and not other nuerological diseases that affect the spinal cord.

                  Wise, that's great and without you we would be really screwed.It is frustrating and what I always felt was your understanding and compassion of the situation.

                  Mike

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                    #24
                    Regression

                    It seems that some people experience regression of recovery, while others continue to make gains. I'm walking C5-C6 7 years post-injury. I was just wondering at which point some incompletes started losing function, and to what extent. Conversely, for those that continued to recover, how long post-injury did this occur, and how significant was it.

                    Comment


                      #25
                      Originally posted by mikek
                      Leif,
                      You really do agree with me as I was only talking about Spinal Cord Injuries and not other nuerological diseases that affect the spinal cord.

                      Wise, that's great and without you we would be really screwed.It is frustrating and what I always felt was your understanding and compassion of the situation.

                      Mike
                      We need to coin a word for the kind of rehabilitation that we are talking about. The rehabilitation that people encounter often after spinal cord injury is the rehabilitation philosophy that was developed shortly after World War II when doctors were still struggling to keep people alive and they pioneered the concept of teaching people to make the most of what they have. But, it has become clear that recovery is the rule and not the exception in spinal cord injury. This is going to be more and more the case when therapies start restoring therapies. The therapies will make people with "complete" spinal cord injury more "incomplete". It will make "incomplete" injuries more functional. It is also quite apparent that this is a long term process and not one that could be achieved at one go in a hospital setting. Many rehabilitation centers have not yet grasped this concept and have not yet provided the additional services that are required for people to recover. That is one of the reason why there are organizations such as Project Walk and other places around. Perhaps we should call the new approach "enlightened rehabilitation".

                      I believe that the rules of rehabilitation apply regardless of the cause of injury. That is one of the main reasons why I have set up a forum for Transverse Myelitis and Atraumatic Spinal Cord Injury. Because most of the emphasis has been on people with traumatic spinal cord injury, many people who suffered spinal cord injury from other causes assume that they have different injuries and therefore are not eligible for the same therapeutic approaches. This is not true, in my opinion. There are of course differences but the principles of rehabilitation are similar. Rehabilitation is about recovery and there is a science of recovery that needs to be established. This is beginning to happen and it is essential for the "cure".

                      Wise.

                      Comment


                        #26
                        Originally posted by Donny247
                        It seems that some people experience regression of recovery, while others continue to make gains. I'm walking C5-C6 7 years post-injury. I was just wondering at which point some incompletes started losing function, and to what extent. Conversely, for those that continued to recover, how long post-injury did this occur, and how significant was it.
                        Donny, "regression" is relatively rare after spinal cord injury and it is important that people find out why the are regressing. It may be from a physical cause, such as compression of the spinal cord, roots, or peripheral nerve. While there has been much talk about age-related deterioration in spinal cord injury, the more that I have looked for this phenomenon, the more elusive it has become. About a decade ago, I was worried that there may be a phenomenon in spinal cord injury that is similar to the post-polio syndrome. However, I don't think that this is true, at least not for most people. True idiopathic loss of function long time after injury are rare. I think that we should make the assumption that we do in a person without spinal cord injury, i.e. let us find out whether there is a cause before we assume that it is due to the spinal cord injury or aging.

                        Wise.

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                          #27
                          Wise

                          It is not possible for me to go to Bergen

                          But if you talk to Hjeltnes tell him about my frustration. I just came home from the hospital he is working and nobody knew anything. I really mean anything. I knew more than them and they could not answer any of my question. And he has been out in permission, I have not seen him for more than two years. And since this is the only SCI hospital, I can't go any other place.
                          TH 12, 43 years post

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