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Thread: Relatively New C1-C2 Injury

  1. #1

    Relatively New C1-C2 Injury

    I have been lurking on the forums for the past few days. What a great place and what nice people! I've never posted on a public forum before, so I am feeling a little shy.

    I suffered a C1-C2 injury snowboarding last winter. I am on a vent, can't speak, and have been struggling considerably with both my physical and mental health. Things are not going well on either front, but I am slowly feeling a bit better with each passing day. I am 25 and was in my first semester of graduate school when this happened. Some former classmates and professors were instrumental in getting me set up with an adapted computer system and I am finally starting to feel like a "real person" again--albeit one that admittedly can't do much of anything at the moment. Despite a number of serious medical setbacks over the past few months, I am hoping at some point to resume my studies and get my life back on track.

    The problem is I am not sure how I am going to go about doing this. Or if I will ever be able to go back to school again. I am feeling very lost and isolated and scared. I guess that sounds like a load of self-pity. Maybe it is, I don't know. Is there anybody here who might have experience with my level of injury (yourself or a friend/family member) that could offer me some hope, suggestions, or advice?

    I am sorry if I sound too negative or needy. That is not my intention. I am fortunate that I do have a very good support system in place. And while in the hospital and rehab I have been able to connect with others who have been injured--but I haven't yet met somebody with an injury as high as mine. Any thoughts or advice would be very welcomed. Thanks.
    Last edited by orangejello; 06-29-2006 at 07:46 AM.

  2. #2
    Quote Originally Posted by orangejello
    I have been lurking on the forums for the past few days. What a great place and what nice people! I've never posted on a public forum before, so I am feeling a little shy.

    I suffered a C1-C2 injury snowboarding last winter. I am on a vent and struggling considerably with both my physical and mental health. Things are not going well on either front, but I am slowly feeling a bit better with each passing day. I am 25 and was in my first semester of graduate school when this happened. Some former classmates and one of my professors were instrumental in getting me set up with a computer system and I am finally starting to feel like a "real person" again--albeit one that admittedly can't do much of anything at the moment. Although I am not sure what the future holds for me, I am hoping at some point to resume my studies and get my life back on track.

    The problem is I am not sure how I am going to go about this. Or even if I can ever go back to school again. I am feeling very lost and isolated and scared. I guess that sounds like a load of self-pity. Maybe it is, I don't know. Is there anybody here who might have experience with my level of injury (yourself or a friend/family member) that could offer me some hope?

    I am sorry if I sound too negative or needy. I am fortunate that I do have a very good support system in place. And while in the hospital and rehab I have been able to connect with others who have been injured--but I haven't yet met somebody with an injury as high as mine. Any thoughts or advice would be very welcomed. Thanks.
    Orangejello, welcome to carecure! I am glad that you posted. There are a number of people who come here with high tetraplegia, including several on respirators. I hope that they will identify themselves to you. You don't sound at all negative or needy to me.

    Wise.

  3. #3
    Senior Member queen's Avatar
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    Good Morning OJ...hee hee (love your moniker)!
    Welcome to CareCure with all of its nuts too.

    Others will chime in once they wake up around here, not to worry.

    We got high/low, young/old (although that last one is subjective given the individual. Myself, I'm a young 60 with a 29 year old mouth (or so they
    tell me) and I have a burst L#1 when my attempted flight from my
    ext. ladder with my chainsaw failed on 5/20/04. I walk short distances on painful heels and look like the town drunk...depending upon what I'm wearing. HAH!

    Don't be shy about asking questions. If you can't find your topic in one of the many forums, exercise, care, life, etc. just ask in the respective forum so it can get noticed, if you goof up they (the Moderator) will just put it in the right place for more exposure for ya.

    And again, dislike seeing ya' here, but glad you found us.

    Queen
    Your life is what you make it, and only you have that choice!

  4. #4
    Welcome to our forums.

    I am just curious about what has been tried to see if a method can be designed to let you speak. It is rare that this cannot be done, even at the C1-2 level of injury, if you are working with a SCI center with experience in this area. Have you tried going with an uncuffed trach and adjusting your vent settings? Using a Passey Muir valve? A speaking trach? Where did you have your rehab?

    (KLD)

  5. #5
    Hi OJ. Welcome to CC.

    You don't sound needy or negative at all.

    I look forward to your future posts and participation here.

    MaryEllen aka Mem

  6. #6
    Senior Member
    Join Date
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    Somewhere in the Rocky Mountains
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    8,152
    Hi Orange:

    Welcome to Carecure.
    You don't sound too negative (read some of the other posts here) or needy. Vent here!!!! Some days you just have to laugh at some of the nuts here....LOL They have provided me with great information and some great laughs at the same time.
    IM anytime
    Tonja
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  7. #7
    My roommate in rehab has a similar injury. She got the Passey-Muir thingy on her vent so she could talk and basically never hushed up again! I talked to her last week, she just got the phrenic pacer so the vent is no longer necessary.

    Her life seems pretty good. (Of course, money helps.) She travels. shops, hangs with friends and kids. Just got a boob lift which I'm quite envious of!

    You're lucky, with the support system. I think you'll be able to go back to school. Christopher Reeve had your level of injury and he did plenty.

    Your profile says you've been injured 6 months? In that case, you're doing fine. It takes a long time to gain equilibrium after SCI.
    Last edited by betheny; 06-29-2006 at 12:48 PM.

  8. #8
    hey OJ, glad you are here, but not on the terms handed.. you sound very positive and intelligent. i'm not your level, but mental well-being is the key to living in this new way.. you need to def. go back to Grad. school.. you will get ppl. to respond on how they accomplished their goals..i'm just Southern trash, so what do i know???? oh yeah, a sense o' humor will look good on ya' too.. good luck..





    Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

    If you ain't laughing, you ain't living, baby. Carlos Mencia

  9. #9
    Thank you all for the warm welcome.

    It does make me feel good that people would care enough to reply. As I mentioned I lurked on the boards for almost a week, unsure of what to write. I agree Queen: it's not so good that I have to be reading and posting on these forums. But knowing there is a community out there does help things a great deal.

    I am just curious about what has been tried to see if a method can be designed to let you speak. It is rare that this cannot be done, even at the C1-2 level of injury, if you are working with a SCI center with experience in this area. Have you tried going with an uncuffed trach and adjusting your vent settings? Using a Passey Muir valve? A speaking trach? Where did you have your rehab?
    My delay in speaking has, I believe, been the result of two things. The first is that it has proven very difficult to get me medically stable. I am far behind where my medical team hoped I would be by now. Since sustaining my injury on Christmas Day I have experienced a number of serious complications, including several bouts of pnemonia (I am spelling that wrong, I know), and collapsed lungs (I won't even try to spell that!), among others. It literally has been one major setback after another.

    My rehab has been delayed and compromised because I keep ending up back in ICU. Emotionally this has taken big toll. I have gone through a number of periods of severe depression and despondancy meaning that I haven't been the most cooperative or compliant patient--although, to be honest, laying here with this injury hasn't given me much say in what is going on. I could say all this has been devastating (to put it mildly). But it's weird--I think I still haven't fully grasped what has happened to me. It is has been 6 months now. Denial? Yep. It's been frustrating not being able to communicate easily until I was well enough to use the computer. But for much of this time, I wasn't all that interested in talking to anybody. That sounds horrible, I know. Especially when I am being so "chatty" with my computer now that I have figured it out. Admittedly, I haven't dealt with things very well. But I am, I think, finally moving to where I need to be.

    The second factor is, as you suggest, that the facility I am at does not have a great deal of experience with my type of injury. I was given the option of being transferred to at least two places that have more established ventilator programs. I declined. I don't know if, and don't really want to speculate, whether I made the wrong decision. I am back in rehab now--hopefully for good this time--and the team here has been wonderful. I am still not as healthy as I could be, so things are still going very slowly. I haven't been able to tolerate an uncuffed trach. We've tried several times. Plans are for me to be in a Passey Muir as soon as possible. Everybody thinks I will get there. When is the question. Would I be speaking and further along had I chosen a different program? I honestly don't know...

    I guess that is it. It just took me almost two hours to "type" this message. Part of me finds that incredibly depressing. But it's two hours of productivity.

    Thanks again everybody. I'll keep you all posted how things go. I do have a ton of questions, so you will probably here from me again soon.

  10. #10
    I just re-read my post and it does sound a tad bit depressing. Geez. I really don't want to come across as all gloomy. Here is something that is worth a laugh: my name comes from the fact that for the longest time, orange jello was the only "real food" I was able to eat that wasn't pumped into me via one of the amazing number of tubes protrouding in and out of my body. I looked like a octopus. Still do, I guess.

    Orange Jello Pudding Snack are the best. My best friend has been buying them in bulk for me!

    I guess that isn't really all that funny...oh well...

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