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Thread: bad day today

  1. #1
    Senior Member okwjoe's Avatar
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    Sep 2004
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    wesley hills, new york
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    bad day today

    I just got back from the weekly team meeting for my C5-6 14 yo. son. I have been here on these boards and have recieved lots of positive feedback. the doctor sills says he is a complete despite him having c-7 function. She says he is not a incomplete because he has no anal sphincter. I explained to her, he can feel therometers . but she said "I examinined him before he he is a complete. She says I have to come to grips with realty and stop beating myself up by holding out hope that he may regain any "substansial return" meaning any hands or finger function. She sais she will test his anal sensation later today or tommrow, but she said do not expect anthing different. I am soooo upset and confused. I can't even go back and see my son right now.

  2. #2
    My advice: Don't EVER let a physician or other health professional treat you like this. "...Come to grips with reality". That's pretty nervy. My first SCI doc told me this as well as "the most you'll ever be able to do is drive a power chair with a sip n puff or head array". I fired him on the spot and got a new SCI doc. She told me, "there are no guarantees, but you never know for sure". Well, I worked very, very hard (still do) and have slowly regained function. I'm c4/c5 injured, but now 4 years later can drive my chair with a joy stick, feed myself, brush my teeth, apply make-up, take several steps in the pool, swim 2 lengths of the pool, and have great trunk control. I do not have use of my hands or wrists, I use adaptive devices for many of the above activities.

    Best of luck, and hang in there. Every injury is different and NO ONE can accurately predict the ultimate outcome.

    Sue

  3. #3
    don't pay attention to what anyone says his level is.
    in the long-run (his life) it makes no difference.
    the difference is what he can and cannot do independantly, and this will improve/change over the years.
    dr's like to give diagnosis and prognosis, it makes things more orderly (i.e. can look it up in a text book and/or have some kind of referance) for them, and sometimes for their patients.
    you and your son and your family/friends need to concentrate mostly on what he can do now and what he'll be able to do in the future (w/ and w/o assistance), and less on the text-book definitions other people will give you.

  4. #4
    Senior Member dogger's Avatar
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    Mitchell , Qld. Australia
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    OKWJoe , I briefly outlined my recovery here .

    A couple of things i will add , 1) I still don't have anal sensation [ which is about the only place I don't have at least partial sensation ] , so under the ASIA Scale , I am a complete . 2) I was told by everyone except my SCI Doctor not to keep saying that I would walk again , even as I was getting motor function back .

    The way I handled the pessimistic attitude by these ''experts '' was a determination to prove them wrong . Remember , '' [s]he who laughs last laughs loudest '' . No one should expect you to blindly accept what they say in regard to the direction you [ or your son's ] life will take in the future . Last person who tried this on me was muttering ''you are a bloody lost cause '' , as she loaded my kids and my bank account into my car and drove off in a cloud of dust 5 years ago .

    About 18 months post injury , I had the ''joy '' of seeing the Doctor [ who had been particularly insistent that i should stop fooling myself that I would walk again ] who had been the Resident [ Intern ] during the earlier part of my hospital/rehab time . On me saying hello to her by name , she said '' I'm sure I don't know you '' , to which I replied with my name . She said '' I didn't recognise you standing up '' , I said '' You never believed I would did you , and that I was a fool to think otherwise '' . She suddenly remembered someplace she had to be five minutes ago and hurried off .

    While I'm not saying that your son can definitely expect the return I got , I will say that in my opinion , anyone who can predict a definite outcome in the early stages of injury should also be able to give you next weeks winning lotto numbers .

    Though I generally don't play the ''what if '' game , there are times I wonder what my recovery would have been if I was given methylprednisolone [ it was 14 hours from when I was loaded into the ambulance until I was admitted to hospital ] and underwent the aggressive therapy available now [ my injury was over 13 years ago ] .

    Thank you ,
    Dogger

    every day i wake up is a good one .

    [This message was edited by dogger on 10-05-04 at 08:15 PM.]

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