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Thread: Stage 4 Ischial Wound Ruining my Life -- Failed flap <45 days after discharge

  1. #61
    So sorry to hear about all of this. Be sure you get a custom seating system set up before you start sitting this time. Both balance and pressure reduction needs will be drastically altered by having a hemipelvectomy. Did you also need to have bowel/bladder diversions??

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  2. #62
    Quote Originally Posted by SCI-Nurse View Post
    So sorry to hear about all of this. Be sure you get a custom seating system set up before you start sitting this time. Both balance and pressure reduction needs will be drastically altered by having a hemipelvectomy. Did you also need to have bowel/bladder diversions??

    (KLD)
    I did not have a bowel/bladder diversion. I know a percentage cannot be reversed, and I wasn't ready for that possibility at my young age. The general surgeon said that's fine, and we have done bowel care in the bed and it has worked out successfully. The flap incision healed with no setbacks.

    Right now I'm only up to 30 minutes BID. I'm sitting on a loaner Jay cushion and doing a 1 minute pressure relief every 15 minutes. Either tomorrow or Wednesday I am being shape-captured for a new Ride Custom. The PT is extremely thorough with skin checks before and after sitting.

    I am very uncomfortable sitting right now. The hemipelvectomy/flap has left me with basically no inguinal area on the left side, and when I sit I have this pooch of soft tissue that splays out laterally. I don't know if I'll have to go wider in my wheelchair now because it's hitting the side guard. I also don't know how I'll get any of my clothing hemmed to fit well ever again.

  3. #63
    The Ride custom cushion should accommodate that flap of tissue. Do you have a "dog ear"? These often smooth out over time.

    A good tailor should be able to alter your slacks for you.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  4. #64
    Quote Originally Posted by SCI-Nurse View Post
    The Ride custom cushion should accommodate that flap of tissue. Do you have a "dog ear"? These often smooth out over time.

    A good tailor should be able to alter your slacks for you.

    (KLD)
    I have a dog ear at the part of the flap where the incision meets medially in the inguinal region. It's not very big. I have my first flap scar which runs laterally, and my new flap scar which pretty much travels straight across my butt, creating what looks like a third butt cheek.

    When I sit on my cushion its just the soft tissue in that area pushes out laterally, not a dog ear, it's just how it ends up when sitting based on the constraints of the scar tisue.

  5. #65
    Senior Member lynnifer's Avatar
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    Kinda figured osteo. Anything that won't heal ... and unfortunately this is something you'll fight for the rest of your life. My experience has been that osteomyelitis just goes into remission. If there was a way to truly get rid of it, I would! I wonder about a 2 week treatment of IV antibiotics once per year just to keep it at bay .. but just a theory.

    I have constant trouble with my feet ... got some major healing in my left foot over the Fall and Winter (so far) but the bottom of my foot is ... probably ... osteo. Not looking forward to going back to the infection specialist.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  6. #66
    Quote Originally Posted by lynnifer View Post
    Kinda figured osteo. Anything that won't heal ... and unfortunately this is something you'll fight for the rest of your life. My experience has been that osteomyelitis just goes into remission. If there was a way to truly get rid of it, I would! I wonder about a 2 week treatment of IV antibiotics once per year just to keep it at bay .. but just a theory.

    I have constant trouble with my feet ... got some major healing in my left foot over the Fall and Winter (so far) but the bottom of my foot is ... probably ... osteo. Not looking forward to going back to the infection specialist.
    I needed daily antibiotics to remain asymptomatic. The 4 times I came off IV I went septic within 2.5 weeks. A single 2 week course would not have been enough.

  7. #67
    Senior Member lynnifer's Avatar
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    I agree. The smallest amount of time I was on them was 6 weeks but 13 weeks was the norm.

    My infection specialist was aggressive. I hope this is the last you deal with this but yeah, we both need to stay one step ahead of this.

    Wish we knew why some get wounds so bad and others don?r.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #68
    Quote Originally Posted by lynnifer View Post
    I agree. The smallest amount of time I was on them was 6 weeks but 13 weeks was the norm.

    My infection specialist was aggressive. I hope this is the last you deal with this but yeah, we both need to stay one step ahead of this.

    Wish we knew why some get wounds so bad and others don?r.
    Yea, I agree. The IV abx were just discontinued today, I was on them for almost 11 months which I find insane. I also got shape captured this morning for my new custom cushion and they're about to switch me from the Clinitron to a Dolphin bed within the hour. I'm up to 2 hours of sitting now, it's starting to feel like progress finally.

    When they put you on IV abx, was that enough to clear your infection or did you need surgery?

  9. #69
    Senior Member lynnifer's Avatar
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    I had my left ankle bone removed. Two other times, I healed up with just IV Antibiotics. I assume since bone cells are so dense that osteo just hangs small and tight and waits for the opportunity to rear its ugly head ... like when the immune system is weak or you're sick or whatever.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  10. #70
    Senior Member lynnifer's Avatar
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    Hope the news is good.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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