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Thread: Bladder Augmentation/MACE (Malone Procedure)

  1. #1
    Junior Member karab's Avatar
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    Bladder Augmentation/MACE (Malone Procedure)

    Hey everyone. I've been reading this forum regarding the same topic. I figured I need to explain my personal situation, and hopefully get some wise/kind words of advice from you.

    I'm 22. I was born with right hemiplegia Cerebral Palsy. I'm not wheelchair bound, I don't use any sort of walking aids. Totally "normal."
    (http://sphotos.ak.fbcdn.net/hphotos-..._3580650_n.jpg)


    Here's the situation. I've been getting UTIs since I was 6- always had many "accidents" as a child. No one really knew why, no one ever had answers. I was hospitalized for a kidney infection back in 2008. Finally decided I needed to talk to someone different about it. I've had 2 urodynamics tests done. Found out I have high bladder pressure, low bladder capacity, and kidney reflux (3rd degree).

    They have done 2 kidney function tests - about 56/44% is what we found out. So not the greatest, not the worst.

    Urologist has suggested self-cathing. I have to lay on the floor in order to cath, and it's just terribly difficult for me, so I've kind of thrown in the towel on that. They have suggested Botox, but my insurance probably won't cover it. I'm not sure if it would be the best solution anyhow.

    The last thing she suggested was this bladder augmentation surgery with stoma. Also, the MACE procedure w/ a stoma because I have bowel movements 1x a week (colon is about the size of an apple)- Miralax doesn't seem to do the trick.

    I've done a lot of research on it, but I would love to hear personal stories.
    I canceled my initial appt (Jan 3, 2011) to discuss this because, in my mind, I really didn't want this... but the urologist personally called me a few weeks ago and told me I should really consider this... My appointment was rescheduled for Jan 24th.

    So, my question is to you guys, who have had this done/know anything about it:

    Was it worth it?
    Pros/Cons?
    Recovery?

    ANYTHING else you want to add would be very appreciated!
    Last edited by karab; 01-18-2011 at 12:11 AM.

  2. #2
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    Hi Karab,

    Have you had the same urologist the whole time? I'd definitely get a second opinion just in case.

    After 10 years of constant infections and leaking (plus Botox and maxing out on dosages for all the various bladder drugs) I finally decided to get an augmentation cystoplasty with a continent stoma (belly button). Sounds like it's not quite the same procedure you might be having.

    It has tremendously improved my quality of life. I can now sleep through the night, I don't worry about accidents, and I hardly ever have any infections (and usually if I do they don't have to be treated). I didn't *need* to have the stoma, but we decided that it might come in handy in the future, and I'm glad I got it. I'm able to cath in so many more places...for example, this weekend I was at a karaoke bar that didn't have accessible bathrooms. Rather than having to go home, I just went out to my car and cathed there. I was with a big group of people, and most of them didn't even notice I was gone!

    The recovery from the surgery was pretty horrible. You don't realize how much you use your abs for until they have a huge incision - definitely prepare yourself for that. The bowel portion of it was probably the worst, not sure if you'd have to deal with that for your procedure or not. It was really painful to start passing material through my bowels again. Definitely talk to a pain management person before surgery - my urologic surgeons didn't do a great job of keeping the pain down - my only regret.

  3. #3
    Hi "Karab,"
    Welcome to Care Cure Community.

    The topic of big surgeries for bladder management have been making the rounds on this website this morning. So, if you don't mind, I am going to copy part of a post that I left on another thread.

    Twenty eight years ago, out of rehabilitation, I managed my bladder with a male external catheter and a leg bag. As time went on and my neurogenic bladder changed, I had to start a program of clean intermittent catheterization (CIC). It worked okay for a while, but all along, I found it very limiting to my daily activities and as time went on, I had to cath up to 3 times a night, a major interruption to sleep. After a year of cathing many times a day (at one point every two hours) with very low volumes (even though I was taking oxybutynin to try to control bladder spasms) each time and having repeated urinary tract infections, I too was faced with taking the next step in bladder management. Ileovesicostomy and Mitrofanoff procedures (similar to the MACE you are considering) with or without bladder augmentation were discussed and strongly promoted by the neurogenic urology surgeon with whom I consulted . These are very BIG surgeries with major recovery times. I preferred to take a "baby steps" approach, suggested by my primary care physician and general urologist to finding a new bladder management method by getting a supra pubic catheter (SP). This is a simple and reversible procedure. The SP procedure is done in an out patient setting. A puncture/incision just above the pubic bone through the abdomen to the bladder creates a stoma. A foley catheter is used to drain urine into a lower leg, thigh, or belly bag. The foley is changed about once a month and the leg back twice a month. At night, I use a 2000cc collection bottle. I had the SP inserted at the end of June 2010 and have never looked back. If someday, this is no longer working for me and I have to face a bigger procedure, I still have that as an option. But, for now, I am perfectly happy with the results and new found freedom from, what was for me, numerous catheterizations every day around the clock, profoundly effecting my life.

    At your age, I know I would try to go with the least invasive and most reversible procedure available to me. If you want more information on the SP catheter, try searching the internet or this website for "supra pubic catheter."

    Write back to us and let us know how things are working out for you.

    All the best,
    GJ

  4. #4
    Junior Member karab's Avatar
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    Gosh, after reading these, I'm second guessing myself.

    I've been to different urologists throughout my childhood, but they all assumed it was "in my head" and I was "lazy" for not going to the bathroom- none of them were very thorough, until I was referred to this doctor. She has been pretty thorough with everything. It's overwhelming.

    It just seems like I don't have many options.

  5. #5
    You've got options that need to be discussed with a urologist that you trust. The question for your urologist is...at my age what is the harm of going with a baby step approach and trying a supra pubic catheter before I buy into a major surgery? At my age (65), I am cautious and suspicious enough to raise a red flag and ask the tough questions.

    All the best,
    GJ

  6. #6
    Junior Member karab's Avatar
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    Also at my age, I don't want to have a bag either.

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    karab - yeah, it seems like you're in a really tough spot. I'm not ambulatory, and I certainly didn't want a leg bag - I can't imagine that you really don't want one!
    I had to have a supra public temporarily for a few weeks after my surgery. It hurt SO bad. Every time I moved I felt like my bladder was getting tugged on, and that it was going to get pulled out of my body. I really hated it.

    If I were you, I'd explore the Botox a little more. You may be able to get insurance to cover it if your doctors write letters (mine did), and since its temporary there shouldn't be any harm done.

    I see your scheduled for surgery on the 24th, so it may be too late (or you may have already made up your mind). I hope that you're doing okay.

  8. #8
    Junior Member karab's Avatar
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    Quote Originally Posted by jgrant27 View Post
    karab - yeah, it seems like you're in a really tough spot. I'm not ambulatory, and I certainly didn't want a leg bag - I can't imagine that you really don't want one!
    I had to have a supra public temporarily for a few weeks after my surgery. It hurt SO bad. Every time I moved I felt like my bladder was getting tugged on, and that it was going to get pulled out of my body. I really hated it.

    If I were you, I'd explore the Botox a little more. You may be able to get insurance to cover it if your doctors write letters (mine did), and since its temporary there shouldn't be any harm done.

    I see your scheduled for surgery on the 24th, so it may be too late (or you may have already made up your mind). I hope that you're doing okay.
    not scheduled for surgery on the 24th- i go up to discuss the surgery.
    the urologist was going to try to get botox covered, but she hasn't even mentioned it as an option anymore. from the stories i've read on here, i don't know if botox would be worth it.

  9. #9
    I would agree that having a frank discussion about your options and the risks/benefits of each is in order. Not sure if you have seen the sticky note at the beginning of this care forum entitled "Bladder Management for Adults with SCI" but it goes over several of these options in general terms and this cn help you frame your questions. It is a great resource.

    AAD

  10. #10
    Junior Member karab's Avatar
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    Thanks, I will have to check that out - even though I don't have a spinal injury.

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