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  • I did not get more functional recovery 3 or more years after injury.

    68 46.90%
  • I had a "complete" spinal cord injury at 24 hours and had no voluntary movement or sensation more than 2 segments below the injury site but recovered additional motor and/or sensory function 3 or more years after injury

    19 13.10%
  • I was an ASIA A at 24 hours and recovered additional function 3 or more years after injury

    29 20.00%
  • I was ASIA B at 24 hours and recovered additional function 3 or more years after injury

    22 15.17%
  • I was ASIA C at 24 hours and recovered additional function 3 or more years after injury

    7 4.83%
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Thread: Do people who were ASIA A, B, C at 24 hours after injury recover function 3 or more years after injury?

  1. #51
    Chris2, on the contrary, what I was trying to suggest is that being on the half that recovered versus being on the half that did not recover does not necessarily lead to happiness. I know a person who had a C4/5 injury and quadriplegic. She described trying to move her arm was like trying to move her hair. She thought that she would be happy just getting her right arm back. It came back. She hoped to get her right hand back. That came back, too. It went on and she eventually got back everything. At 3 months after injury, she walked out of the hospital. If her recovery had stopped anywhere along the way, she would have been unhappy. Those who are quadriplegic envy those with paraplegia. Those who are paraplegic envy walking quads/paras. It never stops because recovery does not bring happiness. It just brings the desire for more recovery.

    Hope2 and Betheny, it is so important for people not only to educate themselves but eventually to educate the doctors.

    Wise.

  2. #52
    Wise

    your last post was very interesting - perhaps I shouldn't say this but it makes me worry about the people who have been to Dr Huang and Dr Lima - their expectations may not be realised and yet someone has to be the first

    I like your definition of a cure - a 3rd party would not realise person had been injured - that's what I long for and hope can be achieved

    - I know what you mean, those on this site who can walk but not correctly don't find it satisfactory - there are problems with that that I had never thought of. Dogger told me once that it is difficult in a crowded room - the people naturally move about slightly but with his injury that movement is not so easy so he gets left out.

    I've also wondered about walking at a slow pace, what happens if you can feel your bladder and are dying for a pee? Can't sprint to the nearest restroom.

    Yes, normal walking (and hand movement if a quad) may be asking an awful lot but i hope scientists are making that their goal.

  3. #53
    Dr. Young, perhaps that person was one of those perpetually disatisfied types. I do understand your point but I'm certain that recovery of b/b alone would be infinitely satisfying to me.

  4. #54
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    "Christopher Reeve (...) recovered sensation in over 75% of his body"
    I didn't count percent of how much I got in in pic games with his, alternate routes NOT TRANS-SPINE. But parts of arms, sides, legs, and front.

    (Though once getting in elsewhere mentioned right cerebellar alternate routing one into left arm one I have been finding ways more fascinating.
    CR's not the only where I got alternate skin sensory in, but the only I got alternate cerebellar translinking in.)

    "and he is able to move some muscles on all four limbs."

    IMO his right SCI are not that damaged.
    And aiming left I also got stuff in going all the way through high C.
    (And left also the mentioned by-passer alternate interlinking.)

    With this mix of stuff going trans-C
    (particularily the right not seeming that damaged, and parts of the left also seeming not completely disconnected),

    and outstandingly high alternate interlinks,
    not going via spine,
    which I got in in the games with his, and none
    scoring higher,

    I recommend some care, before taking CR
    as an example.

    If another didn't have right side that much left (and left side ain't zero there, either),
    and had no alternates,
    might be quite differing.

    And alternates ain't score "function REcovery". Or at least not from my perspective.

  5. #55
    Dr. Young,
    You can't educate someone who isn't willing to listen, or who believes they know it all. They have a mind block unfortunately. The doctor I spoke of would not listen and I think he would probably laugh at any of the promising new research that's being done now and call it ridiculous...in fact, I believe he actually did concerning OEG if I remember what a friend once told us. I believe many of these doctors prefer the patient to be completely ignorant. I suppose that makes their job easier...don't know. Or maybe it's an ego thing. Some just want to hear from the patient for the 15 or 30 minutes they're in the office and then send them away to not be bothered by them anymore until time for the next office visit. Many of the medical personnel at these SCI facilities such as the one my husband was in, including the secretaries, assistants, therapists, nurses as well as doctors become hardened to the suffering they see on a daily basis.(Actually had a nurse complement my husband on his attitude, and then unprofessionally and uncomprehendingly compare him to someone who was crying because they had "another bowel accident"). They don't believe there is anything a person can do to try to gain function. They wait for your fingers to move before they will work with them. They wait for your legs to move before they will work with them (my husband never had pool therapy...never realized he could slightly move his legs in the water until we joined a YMCA about 1 1/2 years post injury). If you should question anything...they write in your husband's records that "the wife is in denial". They just want you to be quiet and do as they say. In my husband's case, they wanted him to be completely dependent on a caregiver, and just send him home to learn to live with the injury...no hopes of getting better. They do not accept a person who wants to do everything they possibly can to try to gain back whatever is possible.
    But anyway...I kind of went wild there...hard to stop once I get started...uh... there are doctors who will listen, who will read and consider information you give them and contact specialists to refer you to or to talk with if necessary about things and have open minds like my husband's doctor now, although he is not an SCI specialist, he is in charge of my husband's care. The best SCI doctor in the world can't help if he doesn't have the ability to listen to the patient. But I definately agree a person has to try to talk to their doctor about these things and if he won't listen, find one who will.

  6. #56
    hope, I don't mean to provide excuses for doctors but many feel that failure of people to "accept" their injuries is an impediment to dealing with their problems. They do have a point in that denial of the problem is a problem in some people but I also believe that doctors should not carry their pessimism beyond what the data provides.

    There was a time when virtually all doctors believed that recovery was not possible after spinal cord injury. This is because the scientific dogma of the time was that the spinal cord cannot regenerate and therefore no recovery was possible. We, however, know that this is not true. A majority of people recover some function after spinal cord injury, even after so-called "complete" spinal cord injury. This does not mean, of course, that the recovery is complete or that we do not need to develop therapies to improve the recovery. I know of no other condition where doctors go to such lengths to deprive people of hope.

    Some years ago, I told a reporter in St. Louis who was asking me about the dangers of giving "false hope" to people with spinal cord injury that "while hope is painful, no hope is devastating". What doctors really should do is to stick to the data and not impose unwarranted pessimism on their patients. There is no question that somebody with "complete" spinal cord injury will recover less on average than than a person with an "incomplete" spinal cord injury. This is well-documented. However, this does not warrant the prediction within days after injury that a person will "never" recover any function. This is not true. Likewise, the prediction that all recovery is completed within a year after injury is also not true and should not be told to patients as if nobody gets recovery more than a year after injury.

    In 1995, I wrote an editorial for the journal Science entitled "Fear of Hope". In it, I pointed out that clinicians and scientists are taught to avoid giving false hope. Some of the behavior that I pointed out at that time are much less likely today compared to 1995. In part, scientific advances have resulted in the providing scientific bases for hope, that the spinal cord can regenerate, and that recovery can occur after spinal cord injury.

    Perhaps, the best way to deal with pessimistic doctors is to ask them for the basis of their pessimistic opinions. Ask them for the data, why they feel this way, and why they think that there is no possibility of a therapy.

    Wise.

    [This message was edited by Wise Young on 12-27-03 at 05:19 PM.]

  7. #57
    When I was first injured I could not feel my bottom when stimming. 4 months after my injury I had full feeling in my bottom and later I am able to push and feel pain. I say never say never. I also believe the more you have sensory input in parts of your body the more likely you'll get that feeling back. Example for me I've noticed since I obviously, understatement, sit a lot I have more feeling in the back of my legs versus the front. I also believe that those of us that received Methylprednisone will eventually recover a lot of function. It's just a matter of the amount of time it takes and if we can hang on and not lose hope. Just my 2 cents.

    Deb

  8. #58
    Betheny, I also had Donovan. Not very impressed. I was just a statistic to him nothing more.

    Deb

  9. #59
    Dr. Young,
    I'm so glad that you talk with reporters about this. The media and the public are very misinformed.
    The doctor I spoke of didn't want to hear what his old patient knew from experience and living with SCI, but he was willing to listen to other doctors. Hopefully you can get some of them to believe that what they learned in that text book so long ago is no longer all there is to it.
    This is just my opinion, but we felt that doctor wasn't willing to give us a fair chance. The second (outpatient)doctor was. When everything is at stake, how can they just expect a person to sit there and wait for something to come back all by itself and not try everything possible? Luckily, my husband and I are stubborn and didn't listen. I feel like the worst thing they could do is convince someone with a new injury to not try and feel hopeless and take muscle relaxers, as these people may end up not knowing their true potential.
    You know, when it was 1 1/2 years after my husband's injury and he realized he could slightly move his legs in the water that first time he got in a pool, we wondered if it was from the aggressive exercise he had been doing for months, or if it was something that he could have done all along. I guess we'll never know. Of course, to be fair, the fact that he can just barely move his legs in the water doesn't mean a great deal I suppose. It isn't "functional". In and of itself it means nothing.
    He is still exercising and we still have hope that he will improve, although we have realized the exercise for him will not be enough to get what he really wants, which is to leave the wheelchair behind one day. I know that Christopher Reeve's improvements have dramatically changed his life even though he still hasn't achieved what he really wants (walking) either.

    Debbie 7,
    My husband once told me that while he was still in rehab (during that first couple of months) he could feel the stim just barely, but then it went away. He does have weird sensation on the inside though and can tell if I'm rubbing his leg. When I wiggle his toes he says it feels good somehow. He got Methylprednisolone about 5 hours after injury. Someone witnessed his accident and immediately called 911. Since his accident occurred about 1 mile outside of our county line, it was an EMT instead of a Paramedic that arrived on the scene. At the time,(not sure if it's still this way or not)EMT's couldn't carry steroids on-board. The EMT assessed him and noted it likely he had a spinal cord injury and drove him to the emergency room. The doctor at the emergency room noted he couldn't feel or move below the chest and his hands weren't working, but didn't give the steroids to him (I didn't have a clue to ask for them) and transferred him about another 80 miles away by ambulance again. It was on our way to the trauma center that the ambulance driver told me about how they couldn't carry steroids on board, but were hoping that would soon change. (I still didn't have a clue what she was talking about at that time, I suppose it's just as well) The trauma center actually called the ambulance while we were enroute to ask what was taking them so long, and advised the driver she needed to hurry, to which she said she was going as fast as she could.(Road construction in between the town and the city) Thankfully, they immediately started the steroids when he got to the trauma hospital.

  10. #60
    Originally posted by Chris2:


    - I know what you mean, those on this site who can walk but not correctly don't find it satisfactory - there are problems with that that I had never thought of. Dogger told me once that it is difficult in a crowded room - the people naturally move about slightly but with his injury that movement is not so easy so he gets left out.

    I've also wondered about walking at a slow pace, what happens if you can feel your bladder and are dying for a pee? Can't sprint to the nearest restroom.
    The fact that those with some recovery are not satisfied with that and want even more recovery is true. Is this really a negative thing? Isn't it possible that these same people would be truly happy if they were 100% cured instead of 50% cured? Yes, some people still would not be happy with that because being happy is not in their nature, but why put everyone in this category?

    And walking with crutches has its own set of interesting issues. The tips become ice skates when they are wet and you are trying to walk on a floor that is not carpeted. They do not do so well in ice and snow (thankfully Walk Easy makes spikes for crutches). And what do you do if you fall? Those handy little arm cuffs hold the crutch on and make it very interesting when you try to catch yourself with your arms. As for making it to the restroom, the blessing of a bladder that can void on its own is no catheters, but the curse of it is using Depends for going out in public.

    "The start line will be the finish line." - ChrisD

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