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Thread: Desperately awaiting any info on SCI - C7

  1. #11
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    Hello Dee

    I'm assuming he's at Hopital du Sacre-Coeur

    if you are

    1st that doctor is an ass. 2nd the hospital is very good. The trauma center is really good, and i liked it alot.

    How do i know all that as I was there last year from june 17th to 1st week of july, then transfered to Ottawa.

    If you have the same trauma Dr that i had, he told my family the worst. The physio and ocupational theropist women i had were really great and help me alot.

    They are really big on chairs there, they had me up in the 1st week.

    I have heared from a freind that the rehab is also top notch, and your brother will get lots of work.So your brother will most likely beable to have no problems getting back into life.

    I'm c5/6 and live on my own, no cooking yet, with help of attendants. So at c7 he'll beable to do lots more than me.

    If you read this and go back to the hospital, cou;d you say 'hi" from Brent, aka the english guy from halifax last year.

    Oh and if you are bored and wish to see what someone with less movement, i'm c5/6, can do with a few months rehab, ask if they have the tv show shot on me last year. I've gotten 300 times better.

  2. #12
    Hi Everyone!

    Thanks for all the replies (SCI nurse, skareb, patrick, teesieme, cass, Betheny and Paul Nussbaum).

    To Patonb: Yes he is at Sacre-Coeur hospital. Not sure if he has the same dumb ass doctor you had but he gave us a similar prognosis as you. I did read Gerry some of your reply. Did not say Hi to nurses for you because Gerry was moved out of the trauma department a week ago. Nice to hear from someone who knows exactly where we were.

    Posted this on another message board and am now posting here so I can get a lot responses and then decide which is the best advice. Hope some of you can help me.

    I just returned from visiting Gerry. I kinda don't feel too good about my visit. Not long after I arrived he asked me if I had received any new replies from the message board. Told him I had many - said I would read him some.

    The first reply I read him was from someone explaining to me the reason a lot of doctors are not very optimistic. It went something like: 2 people can have the same inury and one person may walk out of rehab while another could wheel out of rehab". I read a bunch more replies and I when I finished he said "do you mean that someone that has what I have could end up never walking again"? I think I said yes but that I've also had a lot of replies from people with his injuries telling me how well they've done.

    I felt so bad after that. I don't think I will read any more responses till he asks me to. I received responses that have also told me not to lead him to believe everything will necessarily end up OK for him but I'm not sure if this soon was the right time for him to deal with the possibility of never walking again. Can anyone advise me on this - what do I say should he ask me again about the possibility of never walking again? I've also read that this early on patients are often in denial. Do we just let him be for now or do we actually answer completely truthful? I'm thinking this may be the only way he can deal with it right now. On my last visit (2 days ago) he said to my sister and I that he knows he'll never be able to have the same job as before (brick layer) and that's OK. He then said "I know I'll never get back to the way I was before the accident - even if I lose 10% usage of my legs that will be fine". My sister and I looked at each other (didn't say anything) and later said if only that's all he loses. We were both not sure what to say.

    He received confirmation that he will be sent to rehab on Wednesday morning. If he starts asking questions once he gets there will they actually tell him he may never walk again?

    We were also told that once he's at rehab he shouldn't really have visitors in the daytime - only in the evenings. Just wanted to check with everyone if that's OK. Right now he's pretty much had someone there from late morning till about 9 or 10 at night.

    Wanted to also mention that Gerry was in a lot of pain and given pain medication that made him feel so totally stoned that it gave him problems thinking clearly (forgetting when he last saw us, not sure what happened when, etc.) - had a hard time dealing with this. They have since changed the meds and he does not feel so totally out of it anymore - he also said the pain is not as bad as a few days ago.

    I have one other question - I don't know if Gerry is C7 complete or incomlete. I asked his wife today if the doctors have said anything about this and she said no (we have a bit of a language problem - she's french, so is the hospital - I speak french but not well enough for this kind of stuff). If anyone can help clear this up for me please do. Complete and incomplete seem to have different percentages for recovery - right? Hope I'm not asking stupid questions.

    I just can't believe how helpful everyone is (on this site and the other 2 that I'm on). It makes me think that there are a lot of really special people out there. It's like there is a SCI family on the net.

    Thanks to everyone on this site. Hope to have replies soon.

    Take Care
    Dee

  3. #13
    Dee-
    It really is true, every injury is different. He is still in the spinal shock stage, after some of the swelling goes down it will be easier to say what kind of recovery he can expect. That takes months, up to 6.

    I don't see any need to sugarcoat the truth for him. He needs to know the possible outcomes, and that he will have to work his tail off. I'd recommend the truth.

    Did he receive methylprednisone within 8 hrs. of his injury? Many of us that walk some today received that treatment. Dr. Young says that on average, people with complete injuries recover 8% of lost function; people who arrive at the hospital with even slight sensation or motor function below the injury level recover on average 59% of lost function, 75% if they received methylprednisone.

    There is real hope for a cure. This is the first time in history people have been able to say that. It won't be tomorrow, but each tomorrow draws us closer. He needs to be in the best possible shape for this development, when it comes.

    If he's in denial, that's no surprise. I would recommend the truth; his denial will sort itself out with time. He has had a huge shock. But he is still your brother, and he's not a baby. He'll handle all of this.

    I liked when my friends came to rehab during the day, they were just cheerleaders. Nobody should be allowed to distract him.

    Good luck-Beth

    C5/6 incomplete, injured Aug. 2000

  4. #14
    The issue of his recovery is a difficult one, but this is what I would recommend. It is important to be honest, but not brutal. Any physician (or other health care professional) who says at this time there is no chance of his walking does not know what they are talking about. There is no guarantee either way, and it is too soon to say. It is honest to say this:

    "Right now, it doesn't look good for walking out of the hospital, but it may take up to two years or longer for you to get to your maximum recovery. We don't know how much recovery there will be. We need to deal with what we have right now, and we will all hope and pray that you do get more back. We will also all work hard to be sure that the science that may give us a cure becomes a reality."

    Don't pound it into him. He knows at some level (from what you say he is saying) but continuation of hope is important at this time. It is not denial...denial is turning your face to the wall and just waiting for a cure without making any effort or work in therapy, plans for discharge, etc.

    Ask his physicians about his level of injury (sounds like C7 from your description) and his ASIA score. They should know this. It will be A,B,or C (there is also a D and E, but not applicable right now). Unfortunately incomplete does not necessarily mean not permanent, but the sooner he gets return (ie, appears incomplete), the more likely he will get significant return.

    Read Dr. Young's article here on levels and types of spinal cord injuries for more details on this:

    Spinal Cord Injury Levels and Classification

    As far as visiting, we encourage family visitors to come during therapy sessions so you can learn about what he is doing and why. It is important though that visits not intefere with his therapy times, so friends, etc. might do better to visit in the evenings and weekends. Keep in mind though that he will be VERY tired after a full day of therapy, and people need to not over fatigue him or wait for him to say he is too tired to visit (unlikely). Also, discuss with the nursing staff his needed care such as bowel programs and catheterizations, which also need to be done on a certain schedule. People usually don't want visitors milling around during these activities.

    (KLD)

  5. #15
    Senior Member kate's Avatar
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    Hi, Dee--

    I just wanted to second what others are saying with respect to dealing with the question of walking. The truth is best, of course--but the truth in his situation is just a statistic, a prediction based on other people's outcomes. My husband's attitude was always, if it's possible, I will do it.

    I think this kept him focussed on what he could do something about, like cooperating as hard as he could in rehab--and able to be patient with the stuff that was just impossible to know.

    I remember one stupid psychologist who kept asking me if Bruce was depressed. They kept wanting to see him "grieve", but how do you grieve a moving target? Every time some little thing got easier, I would think, boy, I'm glad he didn't waste any time grieving over that one.

    One other thing I wanted to say is that if the hospital doesn't ask for his wife (or whoever is going to be spending days and nights with him when he goes home) to be present at least some of the time for OT and PT, she should make it a point to show up.

    It's likely that he'll still need some help when he gets discharged, and she's much better off if she knows ahead of time what to do. I spent part of every single day at the hospital and was trained to do all of it . . . and it was still overwhelming for a while.

    You're right that this is like a family! In some ways it's become just as important as my "real" one.

  6. #16
    Gosh, Kate is right. He will hopefully have a lot of classes to attend, there is so much to learn about bowel, bladder, transfers, all aspects of care. If someone plans to be his companion/helper when he gets home, they really need to attend those classes as well.

    C5/6 incomplete, injured Aug. 2000

  7. #17
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    Hey Dee

    I never got out of trauma, to many lung issues.

    The rehab in Mtrl is excellent i've been told.
    like i said, A person i met in trauma went through the rehab as a C7 and he is doing wonderfully, not walking, but can do most of his daily life by himself.

    I never found out about myself until 3 or more months after my accident and it was totally depreasing.As everyone keeps saying no one knows until its over. A friend went to rehab as a C456 with NO movement, and after rehab walked out, well sort gimp walked, but did walk ,out with little loss. Then 5 years latter got hit by a car, reparalized his right side, and he walked out of rehab better than the 1st time.

    Lots of french there eh. Imagine how i felt, unable to talk or understand what was being said to me.

    With the visitor thing, i was told the same here in Ottawa, They also encouraged family visits every so often to see whats going on, but truthfully i think it was better that i was left alone to do my work/routines during the day, but hey that was me.

    In Canada, we are given trained Attendants if you want paid for by our great health care system. So having family around for bowl and blatter is good for there knowledge, most likly a pre-trained "professional" is going to be doing it, not a family member.


    Best of luck to your brother, and keep your spirits up.

  8. #18
    Dee, for my experience the most important
    items for him to do intially is:

    1) Manage any pain

    2) Get a decent nights sleep

    If these are met, it is much easier to focus on hard work.

    I am just over a year and I am not walking C7-T1
    but being pain free and getting sleep are doing wonders.

    Patience and hard work will then pave the way!

    Hope and Prayers

    Joe

  9. #19
    Firstival, let me introduce myself. I am Canadian from Montreal living in the States. My accident happened 18 months ago (C6-C7 incomplete). Like your brother I did not feel my legs, and could not use my hands. The feelings in my legs returned after 3 weeks. It took 6 months to regain control of my right hand. My left hand is still semi-functional.
    What I wanted to tell you is that your brother should never give up and work hard to improve his mobility. When I was in the hospital I visited a psychologist and his advice was - Never lose hope. My friend from Montreal sent me a book by Dr. Joseph Murphy (Ph.D. in psychology) "The power of your subconscious mind". The book teaches you how to use your subconscious to heal yourself and maintain positive attitude.
    I get extremely offended when people who know nothing about my condition, have not seen my MRI or did not examine me tell me what my prognosis is. Guess what, two neurologists tell me I am to recover completely but it takes on average 2 years. So, let your brother see a specialist in 3-4 months.
    Also, in Canada everyone has insurance. So, I hope your brother will not be limited with the therapy.
    I wish him all the best.

  10. #20
    Moderator Obieone's Avatar
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    Dee .... you have some great responses here .... be sure to tell your sister-in-law about us and to visit us at the Caregiving forum ...... so sorry this happened to your family .... as Beth said glad you found us ... Prayers and blessings to you all ...

    Obieone

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