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Thread: Desperately awaiting any info on SCI - C7

  1. #21
    Hi Dee. I'm a c6 complete injury, 3 years post. I don't want to be redundant but I can give you an idea of what will happen.

    My accident was in downtown Montreal. I was taken to the General then transfered (for reasons unknown) within 24 hours to Sacre-couer. I spent five weeks there, then I moved to the Institute de Readaption de Montreal. I spent six months at the IRM, which is quite long. Then I moved to La Centre de Readaptation Lucie Bruneau where I was staying until my house was to be adapted by the SAAQ, my insurer. During that time I split up with my girlfriend and had to find a place of my own. That took about 15 months. People usually stay at Lucie Bruneau to adapt to their new life, get their stuff straightened out, and find an adapted apartment. Sometimes it takes up to 3 years, but CRLB is pretty relaxed, with an emphasis on independence.
    Even as a complete injury, your brother will be ok at c7. Life ain't over, just different.
    And you will learn French over time. I found it improved dramatically over two years.
    And if you see a French nurse named Kate at Sacre Couer, tell her Christopher still thinks she's beey-oot-iful!

    Yea, I could catch a monkey.

  2. #22
    Senior Member
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    Hey Christopher

    you wer transfered to Sacre-couer as it's the spinal center for montreal. Same reason why i went straight there. My accident was in Hull

  3. #23
    The Montreal General has a spinal centre too though. I went to see my urologist awhile back and he was dismayed at the transfer. And I know alot of people who went there. 'Why the hell did they move you if you were already at the General?' was what he said.

    Yea, I could catch a monkey.

  4. #24
    Hi Everyone!

    Just wanted to give an update on our situation.

    First of all thanks for all the replies.

    To christopher: Have to agree with Patonb - heard Sacre Coeur is best place to be for this kind of accident. Also - would like any info you can give about your stay at IRM - you're the only one that I've heard from that actually spent time there. (My french is actually pretty good - lived my whole life in Montreal. Just don't want to discuss SCI (all info very new to me) in my second language.

    To Obieone: Can't get my sister in-law on - she doesn't speak, understand or read any english. Will try to get my brother on as soon as possible.

    To czar: Loved your story - told my brother about it. Unfortunately he has yet to hear anything positive from any medical staff.

    To NoDecafPlz: Started managing pain - sleep hopefully has started getting better last night.

    To Patonb: Can understand how hard the language thing was for you and read below about the "visitor thing".

    To Betheny & kate: "Visitor thing" - they have since told us that wife & close family should sometimes go to PT & OP - if he's OK with it I'm there. About being positive - read on.

    To SCI Nurse: Value your replies - you have the experience being around this every day.

    Update:

    My brother was transferred to rehab on Wednesday morning - went to see him the 1st night. Told us he was stuck in bed all day because they didn't receive his chair yet - supposed to get it today.

    He told us (my mother, sister and I) that he had a very hard day. He then told us that the a doctor came to see him and his wife shortly after arriving. The doctor told him that from what has happened so far since the accident (2 weeks and 2 days) she doesn't think that he will ever walk again. Talk about someone bursting your bubble - he was so optimistic about starting rehab and he didn't even get a chance to start. He still seemed to handle it pretty well, I think - hard to tell. He told us all he wanted was a good nights sleep (had a patient in his room at the hospital who had kept him up for the last few nights) - but wasn't sure if his news of the day would allow him to get that sleep. The 3 of us felt so bad for him - not much you could say after being told that. That was at the beginning of our visit - when we were leaving I stayed back and spoke to him for a minute. I told him even though he got this terrible news that he should still have some hope and stay tough and work hard in rehab, also mentioned research, but to also be prepared for the worst.

    Earlier I had asked him if the doctor spoke to him regarding the damage to his spinal cord - he said no. Asked him a few other questions but he said it was not mentioned either - since he knows nothing about SCI he didn't really ask any questions (from being on these sites I have so many). I would ask the doctor what makes her so sure he won't walk again - I'm sure she has concrete medical reasons - I'd just like to hear them.

    I'm not sure I did the right thing by telling him not give up all hope - I'm sure you guys out there will help me out here. Please give me any info that will help me to help him.

    By the way - the reason I told him not to give up hope was from some of the replies I have received - read many stories that had good endings even though they were told the worst. Also because of a reply from the SCI Nurse on this site that stuck with me.

    I'll quote her:

    "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 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."

    Sorry I went so long. Anxiously awaiting any replies.

    Thanks

    Dee

    P.S. Maybe I'm in denial.

  5. #25
    Dee, you are not in denial. You are managing a very difficult situation the way you probably cope with all adversity in your life....collecting and processing as much info as possible, and reasoning it through. This is great. Some people feel more in control by intellectualizing like this...it is just a way of coping, and there is no right or correct or better way.

    Don't be discouraged by his first week in rehab. I would wonder what the physician said versus what was heard....this may be different. Unfortunately the first week in rehab means lots of evaluations, which can feel to the patient like everyone continously throwing in his face what he cannot do. It is not unusual to be more down by the end of that first week. It does not mean he is in the wrong place, or that rehab is bad for him. Hang in there, continue to encourage, and in the second week I would expect to see some major gains in his mobility and self care abilities. He should start learning a lot very soon about how to keep himself healthy and prevent the many possible complications of SCI as well.

    Keep asking questions...both here and at the rehab center. If a family conference with his team has not yet been discussed, it should be, and should be held as soon as the basic evaluations are completed. Generally the patient can have anyone (family, friends, etc.) at this conference. Although a good rehab center will encourage questions at any time, this is the only time you get all the team in one room at one time, so it is an important meeting. Have everyone's questions written down so they don't get forgotten. Sometimes family who cannot attend can join in by conference call. Ask about this if it is applicable to your family.

    (KLD)

  6. #26
    Senior Member Belle's Avatar
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    Dee,

    My husband was told he was complete and would probably not see any recovery the morning of the second day, still in the ICU! I had to drive five hours the night before to be with him, I am so glad I did because I stayed overnight at the hospital to be with him when the doctors came in the morning. He had to hear them twice that day, once his spinal surgeon in the morning and once the physiatrist in the late afternoon. I had to be there to soften it up by focusing on what he could still do. It was a rough day. But then he had adjusted to it some by the time he got to rehab.

    I will never ever forget when they told him he would not recover on his own, he said "I'll never play drums again." It was his passion. Of course, he's had three paying gigs since then using his electronic drum machine and has more scheduled so you see, where there's a will there's a way!

    *************
    AB wife of T8 complete para

  7. #27
    Dee, the IRM is very much an institution. Wake up at 730, start bowel care, bed baths for starters, practicing occasional showers... PT and OT every weekday for an hour, In bed by 10. Occasional group outings. Your bro's stay there depends on his level of injury. I've known paras to roll out of there after two weeks. They don't 'throw you out the door' though. He'll probably be there for 3-4 months . His ergo will help him with the insurance paperwork and stuff. If his place to live isn't ready by then they'll probably transfer him to Lucie-Bruneau. Sometimes it can take a while.
    And if your sister in law is Quebecer, I'll probably see something she posts and try to respond in my mangled version of the language.

    Yea, I could catch a monkey.

  8. #28
    Senior Member ohiochica's Avatar
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    dee, i am not sure if your brother is a very active biker but if so he might know a cyclist by the name of alex. alex was over in europe and was hit by a car, causing a sci of the c2,3. at that point he was deemed "complete". alex was extremely fit at the time of injury and after 6 hours of "working out" a day he has regained much mobility. he can walk with support. there is hope, never give up!

    best wishes,
    Becky

    ****MORE OHIO CC RAGE INFO COMING SOON!****

  9. #29
    Hi Everyone,

    It's been a few weeks since I posted - will give an update.

    Went to my brothers' first Team Meeting at rehab and finally had some of my questions answered. His damage was at C6/C7 - doctors believe his spinal cord was crushed. He was considered C6 Complete but his triceps have recently returned so he is now C7 Complete. They think his chances for walking again are close to nil - 2%. They are hoping that some of the movement closer to his injury level returns - hands, fingers.

    Gerry actually told us a few weeks ago that he knows he will never walk again - said this is the best way for him to deal with it, didn't want to have hope and then be totally dissapointed, said he wouldn't be able to deal with that. It's a good thing he had already accepted that (I am now starting to also) - his approach regarding OT and PT is to work as hard as he can and learn as much as possible to be able to do whatever he can with what he now has. From listening to his team, thats exactly what he's doing - working very hard. We can all see the improvement in him between visits. He is now able to do many things with his "cuff" (eating, brushing teeth, etc.) and has started wheeling himself - can't wheel himself for too long but getting better at it every day. He truly has a great attitude - told us his new motto is "What I can't learn today, I will try to learn tomorrow".

    One part of the meeting was for Gerry to tell them what he would like to accomplish in the next month. First thing on his list is to go home for a weekend (obviously wants to go home but also because he needs something to look forward to) - they will try to get everything ready for next weekend. Even tho he's looking forward to going home, he knows it's going to be a very difficult day emotionally. His other goal is to learn to get himself from the bed to his wheelchair.

    Thanks again to all who replied - can't tell you how much you helped. By the way, even tho I haven't posted in quite a while, I still come on this site - read different topics to get more info for future problems Gerry will have to deal with.

    To christopher: He was told he will be in rehab for about 3 to 4 months. Like you mentionned, he will be going to Lucie-Bruneau afterwards. Thanks for the info.

    To Becky: Thanks for the encouragement - if only everyones story could be like Alex's.

    Wishing you all a good weekend.

    Dee

  10. #30
    Sounds like things are proceeding as anticipated. Tell him to keep up the good work.

    (KLD)

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