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Thread: Mitrofanoff scheduled for April and I've never been more terrified

  1. #11
    Senior Member lynnifer's Avatar
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    My best friend is quadriplegic for 29yrs. She had a supra for most of that time and her bladder started to degrade at the same time mine did. Surgeons put in a new supra, gave her botox to bladder ... and just this week she is able to go 3hrs with just clamping as before.

    I'd hold off on the mitro as a last resort.
    Make America Sane Again. lol

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

  2. #12
    Quote Originally Posted by SCI-Nurse View Post
    If you are having part of you intestine place on your bladder, you will most likely still have drains in at 3 weeks and be feeling pretty sore. Not sure why you can't take Gabapentin? We don't stop that in our patients-!? Chance of cancer- with SPTube- about 8-10% after 8 years-pretty rare. The mitranoff can leak also. And you can get cancer in the part of your intestine put on bladder also!
    You must follow the exact instructions of doctor and slowly build up your capacity. Once they say you can cath you will be doing every 2 hours for a week , then very 3 hours , then every 4 hours. You must irrigate catheter as with bowel you will have mucous for the first year atleast.
    It is a major, major surgery!
    CWO
    10% after 8 years is worse than I thought! I got the sp when I was 25 and am now 31. What about when I'm 50? I feel like it's inevitable. Ugh I hate SCI. Myurologist at UNC said the cancer risk associated with mitro is much less

  3. #13
    No, I have never seen it except in one person- higher risk for smokers.
    But bladder aug is good- it is just a major post op recovery and the irrigation of bladder d/t mucuous. but after it has expanded and everything good it will be worth it.
    CWO

  4. #14
    Senior Member
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    This is very preliminary stuff but points to a non-invasive method for bladder augmentation in SCIs with NGO:
    http://www.tandfonline.com/doi/abs/1...nalCode=yscm20
    T3-T7 complete since Sept 2015

  5. #15

  6. #16
    [QUOTE=SCI-Nurse;1824936]No, I have never seen it except in one person- higher risk for smokers.
    But bladder aug is good- it is just a major post op recovery and the irrigation of bladder d/t mucuous. but after it has expanded and everything good it will be worth it.
    CWO[/QUOTE

    Will I have bowel accidents for a long time?
    i push on my stomach to give me a blood pressure boost. Will I eventually being able to do that
    do I literally have to wake up every 2 hours to cath at first?
    Will it lessen my cancer risk?
    I was told I'd need a sling at my opening below to prevent constant leaking. That sounds dangerous because what if I get clogged?

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