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Thread: diaphragm pacing system

  1. #1
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    Question diaphragm pacing system

    Hi, I don't know how to start
    well, here I go a little bit of my story, a concern and the big question,

    In 1997, a car accident left me quadriplegic and connected to a ventilator. And since then I’ve been C1-C2.

    It has been 12 years from my accident. I never had any therapy or rehabilitation, Last year I was tired of everything, so depressed, bored and frustrated that I decide to do something different, to spend some time outside home with other people beside my family and to have some peace of mind trying everything I had around available for my disability to get any better. So I decided to get into a rehab center, of course they didn't want me there (said by them) "a 23 years old female, 11 years with a C1-C2 injury connected to a vent, there's nothing to do there." well, at first they made me try with 2 mints weaning from the vent, it was the longest and horrible 2 mints I ever had. But I made it, to the point that I end up breathing 12hrs a day in 3 months. One day I could breathe up to 16hrs but just did it once, now I got lazy and I’m breathing 10hrs a day . But I wonder how come everything changed? I wasn't able to breathe before! Why can I do it now? What happened with my C1-C2 injury? Nobody here knows the answer.

    Now, last week they invited me to a meeting they had with some doctors about a new procedure called "diaphragm pacing system" they explained it to us and answered to all of ours questions. It seems to be a good thing to have done. They explained to me that I breathe with my chest and some other auxiliary muscles but with the diaphragm, now it's been a year since I started to breathe I’m moving a little bit my diaphragm and that system would help me to improve my breathing. Is that true? Do you know anything about this system? What do you think about their opinion on my breathing? Would it really help me? I need some advise, thanks for your time spent reading my essay


    Thanks again,
    Barbara


  2. #2
    Senior Member Mona~on~wheels's Avatar
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    Welcome to CC Chamama. Congrats on breathing on your own! That's wonderful!
    I don't know anything about the diaphragm pacing system, just wanted to say hi.
    I hope someone else here can.

  3. #3
    Hi Barbara,

    There's a discussion of the system here. If you post a question there, I'm pretty sure he'll reply.

    Congrats on the weaning progress, btw!

    Steven
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

  4. #4
    I'm a C2/3 quad, 24 years post and on a vent. I have been in a discussion forum with the people at Synapse and am looking into getting it. Please feel free to ask questions here as well. One thing that I'm currently running into is that nursing care may get cut after switching to the pacemaker. I'm still working on it, but this might be something to question with your funding source.
    C2/3 quad since February 20, 1985.

  5. #5
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    Question Diaphragm pacing system

    Hi, I'm 24 years old. In 1997, a car accident left me quadriplegic and connected to a ventilator. And since then I’ve been C1-C2.

    It has been 12 years from my accident. I never had any therapy or rehabilitation, Last year I was tired of everything, so depressed, bored and frustrated that I decide to do something different, to spend sometime outside home with other people beside my family and to have some peace of mind trying everything I had around available for my disability to get any better. So I decided to get into a rehab center, at first they made me try with 2 mints weaning from the vent, it was the longest and horrible 2 mints I ever had. But I made it, to the point that I end up breathing 12hrs a day in 3 months. One day I could breath up to 16hrs but just did it once, now I got lazy and I’m breathing 10hrs a day . But I wonder how come everything changed? I wasn't able to breathe before! Why can I do it now? What happened with my C1-C2 injury? Nobody here knows the answer.

    Now, last week they invited me to a meeting they had with some doctors about a new procedure called "diaphragm pacing system" they explained it to us and answered to all of ours questions. It seems to be a good thing to have done. They explained to me that I breathe with my chest and some other auxiliary muscles but with the diaphragm, now it's been a year since I started to breathe I’m moving a little bit my diaphragm and that system would help me to improve my breathing. Is that true? Do you know anything about this system? What do you think about their opinion on my breathing? Would it really help me? I need some advise, thanks for your time spent reading my essay

    THANKS AGAIN
    BARBARA

  6. #6
    It ws originally developed at Case Western and Dr. Ray Onders. The procedure is now done in multiple locations : http://www.synapsebiomedical.com/products/us_sci.shtml . I have talked with about a dozen patients that had it done in Atlanta. All but 2 are off the vent at least 8 hours a day and one has been off 24 hours a day for well over a year. The 2 are off for 3 to 5 hours a day.

  7. #7
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    Thanks all for your replies! thanks god my insurance will pay for this. i was told that Christopher Reeve had it done, and it was good for him but i really need to know if it would really help me with my breathing, would it be worth to have it done? i really need help on this.

  8. #8
    HI,

    I would pursue following the links Steve provided above that describe this technique
    and discuss it thoroughly with your clinician.

    AAD

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