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    #16
    Originally posted by limplaura View Post
    i don't know how to start a new thread, but this is fairly appropriate. i was searching for "spontaneous recovery" and found this "old" info.... or is it old?

    by Wise:

    People with "complete" spinal cord injury (ASIA A) rarely recover walking. It can happen but only when the patient becomes "incomplete" fairly early after the injury. ....
    In my experience, people who have had ASIA A or ASIA B for more than a year are very unlikely to spontaneously recover locomotion. I don't think that I have ever seen a convincing case. ....
    Please, it is important that people do not misinterpret what I say. Spontaneous locomotor recovery from chronic "complete" spinal cord injury is very rare. It may happen if there is something pressing on the spinal cord and the cord is decompressed. It may happen in somebody who has head injury and then recovered from the head injury. But, it is rare. ...

    Wise.

    my daughter, injured 11/13/01 was diagnosed as asia a complete at Kessler (c-5). she had a fragment pressing into the cord anterior, and fracture on the back of the column, stablized with rod and screws, and bone from hip. the fragment was compression retro-fitted twice (initially in Cancun, then again at Mass General a couple days later). it was after a couple years she began sensation with stim in the anal area. we have done almost every kind of therapy over the years. FES bike until that was painful when she began to recover sensation in legs. we bought portable HBOT. etc, etc. recovery is very slow but steady. sensation thruout body, altho only completely accurate thru lower back (she now complains of lower back pain when for ex slumped in the wheelchair too long). motor is descending, and fairly good trunk control. tricepts are pretty good, wrist flexor strong now, wrist extension and grip is somewhat there, gravity neutral. voluntary leg movement beginning to appear. thank God for a great physical therapist who comes monthly to assess progress and carefully stretches and tests all parts of body, as it has never been strictly top/down recovery. as fingers nerves have a longer regrowth path than the trunk, i am theorizing that is the reason for trunk before fingers... any comments? nerve pain has been very bad for years. hypersensitivity with the cathing (so no indwelling catheter), feels when leaking. now bowel progam is hypersensitive. really questioning whether years of pain with recovery is worth it, and i can't believe i am saying that! huge question: would stem cell injection start healing which might also go thru all the pain of re-growth, re-connecting or healing? it has been an extremely painful journey, (forgot to mention major focus on natural supplements for body to heal in recent years) and would this happen to everyone? but this is spontaneous recovery of asia a with beginning signs probably 2 years post injury, and seems to be no plateaus or stopping now, why should there be, on way to complete recovery.
    limplaura,

    I don't know whether laura is your name or your daughter's name but I love the name. Why? It indicates a temporary condition without all the baggage that comes with spinal cord injury. If you had used the name paralyzedlaura, it would have been hard to oversome. Limp is a temporary state.

    Regarding recovery, it occurs in many people with spinal cord injury, even those with ASIA A injuries. This statement in itself is bitter and painful to many people who are spinal-injured and did not recover, because they ask themselves why they are the ones who remain paralyzed while others recover. A vast majority (>90%) of people with "incomplete" spinal cord injuries recover substantial function and a small minority (<20%) of people with "complete" spinal cord injuries recover walking and other functions that one might associate with "recovery". Over 60% of people with spinal cord injuries recover from spinal cord injury with some residual deficits but able to carry on acts of daily living (ADL) without aid. Our goal is of course to ensure that 100% of people with spinal cord injury would do the same.

    In my experience, about 20% of people with so-called "complete" spinal cord injury eventually become "incomplete" spinal cord injury, defined by the completely arbitrary criterion of anal sensation or sphincter contraction. I feel able to criticize this criterion as arbitrary because I was the one who proposed this criterion for "complete" spinal cord injury in 1991. At that time, I was co-chairing the committee of the American Spinal Injury Association (ASIA) with John Ditunno. I felt that clinicians would not be held back by this criteria if they saw that somebody recover anal sensation and sphincter contraction.

    At about 2 years after his injury, Christopher Reeve told me that he was feeling anal sensation. In the ensuing months, he found that he had sensation over 3/4 of his body and was able to move certain parts of his body. None of the movements were particularly useful to him but they represented a significant advance over his previous state which was no feeling and no movement. In my opinion, the presence of recovery is not the same as early presence of sensory or motor function. But, it is indicative of progress and need to therapies that regenerate the spinal cord.

    The spinal cord is constantly trying to recover. The amazing thing is that it often succeeds. A majority of people that I know with spinal cord injury have found that they continue to recover patches of sensation or movements that they did not know that they had. One of the problems is that most such recoveries are poo-pooed by doctors. On the other hand, most people with spinal cord injury are already accustomed to such negative views from their doctors. I believe that the spinal cord is constantly trying to regenerate, remyelinate, and restore function, as long as the person is living. That is why I think that therapies of chronic spinal cord injury will succeed.

    Wise.

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      #17
      hope for recovery

      thank you Wise for your personal response. as we attended your Rutgers Open House while Laura was still an impatient at Kessler, (with the halo still on I believe), you are the reason for her recovery progress. You dispensed calm, hope and wisdom. without hope, there is no attempt for recovery. I (the mother) am extremely stubborn and independent, and fight intellectually with almost every traditional doctor we have ever encountered. they range from practically condescending tolerance to outright denial of any progress, despite evidence before them. Even though there is a significant delay in the feeling arriving at the brain from the new area being tested with a q-tip at first, some doctors rush thru testing different parts on the body to "prove" she doesn't feel the new area of sensation. You fight for us, and not against us. I therefore fought against her muscle rigidity and atrophy from the beginning, and also learned non-use. Without hope, you don't try, and fall victim to the consequent reality of self-fufillment for sure. Despite the pain, I am grateful for her continued healing, and feel terrible for those who fight for healing without progress. All sensation recovery seems a mixed blessing. She never felt the deep sacral pressure sore, but now she would have. Without sensation, you are not aware of the danger while your body is being injured. The first return of menstural cramps? almost funny. Now feeling when your butt needs a change of positiion?... a good thing. The break we had was that the spasms were not painful, so it was no baclofen so the muscles could remain active. Now, violent lower back spasms are painful, and we sometimes require baclofen. The pain is constant and pelvic area and below - the areas where sensation has not completely returned (altho feels temp and pressure in the shower on legs). Rubbing heightens the constant agitated nerve sensation. Everything is always changing... but very slowly and painfully.

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        #18
        Lorraine, welcome. I hope you or your loved one got a good snowflake!

        - K
        C5 Burst Fracture - Motorcycle - June 21st, 2009 - Father's Day.
        http://sci.rutgers.edu/forum/showthread.php?t=124135

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          #19
          Originally posted by Khatsalano View Post
          Lorraine, welcome. I hope you or your loved one got a good snowflake!

          - K
          Lorraine passed away almost a year ago. She lived comfortably at home, met with success with a phrenic pacer and had many friends who loved her. I think Lorraine lived her life with an SCI with great dignity and courage.
          Every day I wake up is a good one

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