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Thread: Foley, leaking & Botox

  1. #1
    Senior Member lynnifer's Avatar
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    Foley, leaking & Botox

    I applied for Botox through my very good insurance at work and was turned down.

    I plan on appealing .. but does someone have literature to show Botox helps? They said no because there was not enough evidence to show it works.

    Had to come home from work early as it malfunctioned (actually the guys at work got me laughing too hard on midnights) so I have a flaccid bladder that holds less than 50mL and stress incontinence on top with a foley cath after 20yrs+ of crede and valsalva. Unfortunately it was encouraged by my rehab almost 30yrs ago. Paying for that now.

    My uro is in Toronto ... offered two major surgeries ... One to totally bypass my bladder and the other is the augmentation.

    I'd prefer to wait until someone is capable of re-connecting bladder nerves ... But in the meantime, I've got skin disruptions from the leaking.

    A collagen shot was offered for the sphincter but then the doc changed her mind 3 months later.

    Was hoping Fampyra would help but it's been 8 months now .. so that's not going to happen.

    Signed home from the night shift early.

    This bladder BS has always been the worst part of paralysis for me ... I'm so frustrated by the lack of treatments and poor band-aid solutions.
    Last edited by lynnifer; 02-15-2013 at 05:56 AM.
    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

  2. #2
    Unfortunately, Botox has not been studied for use in a case such as this, and if you truely have a contracted but flaccid bladder, Botox is unlikely to help with your leakage, since Botox works by paralyzing spastic bladder muscle. What other options has your urologist offered?

    A SP catheter combined with either a urethral sling or even a closure of the bladder neck would be relatively minor surgery. An augmentation would be a big surgery, and would not necessarily help with any leakage unless something like a sling or sphincter bulking (collegen, etc.) was added to that big procedure.

    Have you seen more than one urologist (a second opinion) for this issue?

    (KLD)

  3. #3
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
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    Windsor ON Canada
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    Thanks for the fast response.

    Looking for a uro closer to home ... none are SCI aware though.

    Choices are limited it seems. Not fun.

    None of the anticholergics helped either.
    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

  4. #4
    No, again, anticholenergics would not help with leakage due to a small contracted but flaccid bladder, as they work by relaxing spastic bladder muscle.

    (KLD)

  5. #5
    Quote Originally Posted by lynnifer View Post
    I applied for Botox through my very good insurance at work and was turned down.

    I plan on appealing .. but does someone have literature to show Botox helps? They said no because there was not enough evidence to show it works.

    Had to come home from work early as it malfunctioned (actually the guys at work got me laughing too hard on midnights) so I have a flaccid bladder that holds less than 50mL and stress incontinence on top with a foley cath after 20yrs+ of crede and valsalva. Unfortunately it was encouraged by my rehab almost 30yrs ago. Paying for that now.

    My uro is in Toronto ... offered two major surgeries ... One to totally bypass my bladder and the other is the augmentation.

    I'd prefer to wait until someone is capable of re-connecting bladder nerves ... But in the meantime, I've got skin disruptions from the leaking.

    A collagen shot was offered for the sphincter but then the doc changed her mind 3 months later.

    Was hoping Fampyra would help but it's been 8 months now .. so that's not going to happen.

    Signed home from the night shift early.

    This bladder BS has always been the worst part of paralysis for me ... I'm so frustrated by the lack of treatments and poor band-aid solutions.
    In many ways your situation reminds me of mine. After 30 years post injury and going through several bladder management regimes, I was faced with having to make a decision about what next. Two options were big surgeries that meant lots of down time, long recovery, and internal organ alteration. The third option was the simple suprapubic catheter. I decided on the suprapubic after discussing the alternatives with my primary care physician. We measured the pros and cons together and concluded that taking a "baby steps" approach was the best. If I was unsatisfied with or the suprapubic didn't work for me, I always had the option to go for the more complex surgeries. So far, 31 months into the suprapubic, I am very satisfied with the results.

    All the best,
    GJ

  6. #6
    Try appealing your insurance decision not to cover botox with a letter from your doctor.
    Life is like a box of chocolates, you never know what you're gonna get.

  7. #7
    I would also go with the super pubic.
    C-6,complete

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