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Thread: Urethral leakage and Mitrofanoff/Augmentation

  1. #1

    Urethral leakage and Mitrofanoff/Augmentation

    I've been trolling this board for a while, looking up information about bladder regimes, etc... and I really need some advice from people who have been there.

    First some background - I have been a T-9 level complete para for 24 years now and am 36 years old. When I first became a para - I tried intermittent cathing which pretty much was a disaster due to leaking and a spastic bladder. My urologist switched me to a indwelling urethral cath fairly soon afterwards and that is how I have managed my bladder since then. To be honest with you, it's not something I gave too much thought on over the years. I had my bladder and kidney checks regularly (even at Craig) and throughout the years, no one told me that perhaps this wasn't the best method of bladder management for the long-term. My urologist even consistently increased the size of my catheters gradually as I had some problems with blockages. To be fair, I never went out of my way to find out anything more than what they were telling me either. But I guess I was following the 'if it ain't broke' theory at the time.

    Now, after 24 years, I am starting to have to deal with the problems that an indwelling cather will probably cause in the long run. My bladder capacity is very small and during a urodynamics test done not too long ago, it voided after being filled with only 31ml. My urethra can now fit the tip of a pinky into it and every month or so - my catheter will actually pop out of my bladder, balloon intact. I have to now change my cath every week (previously I had to only change them for hygeine reasons) - sometimes due to blockages though I get the sense that it's more because of some sort of irritation. THe necessity to change the cath more often and popping out obviously was a concern to me, which started me on this journey to find out what my options are.

    At this point, the popping out of the catheter is the only immediate problem that I have. I suppose I could also include the need to change the cath weekly, as I assume that this time span will only decrease in the future. But as it stands, I have no problematic leakage other than when the cath pops out.

    I am in the UK and went to the main SCI facility here to discuss this and to go through my options. I then had a second opinion at another hospital with a slightly older and more experienced urologist. Basically, their opinions on the best options of all discussed were polar opposites. One wants to go for more practical and least intrusive option of getting an indwelling suprapubic catheter. The second wants to do a Mitrofanoff with a bladder reconstruction. BUT - and this is the information I have had a hard time finding on CareCure, after much thought, I have come to the conclusion that the bigger question is not about the method I end up chosing to empty my bladder but what means I am going to use to prevent leaking from my urethra.

    When discussing this with both urologists, a lot of the focus was on the bladder management itself and less on the urethral management which seems backwards to me. It seems that I could go through any number of various procedures to change the way I cath and I could end up leaking urine from my urethra, putting me in a worse situation than I am currently in.

    I've found quite a few threads on the Mitrofanoff and those have been very helpful but what about the bladder closure or kinking methods? I am just not entirely sure what they are. I know a TVT is one - though I am concerned at the not so great success rate of this procedure. Both urologists did mention that it was more ideal to have some access to the bladder through the urethra in case of problems (stones, etc...) But what else is there besides the TVT and what are the stats on how successful these procedures are? Does a bladder augmentation automatically reduce leakage no matter what size urethra you have? Am I overly concerned about this question over the other?

  2. #2
    Hi,

    It is great that you have researched these methods alot before making a decision.

    It is my experience that leaking from the urethra can be common (but not everyone) following surgery and lessens over time. It should not be a major problem. You can search this site for "sp tube and leaking" and get some experiences. With a sp tube, most people should also be on an anticholinergic such as ditropan/detrol that reduces spasms and can reduce leaking. Other approaches would be surgical closure of the urethra, though I have seen it be necessary only in few cases.

    The mitrofanoff in my experience has little to no urethral leaking but obviously is a much more extensive procedure.
    I will ask if other nurses have more experience with this procedure to share.

    AAD

  3. #3
    Unfortunately long term use of indwelling catheters can cause many problems. For women, one of the big ones is the risk for developing a patulous (stretched out) urethra. This causes problems with leakage because the catheter no longer seals around the catheter. Menopause can make this worse because the low estrogen levels also cause thinning and less elasticity and moisture of the urethra, which also makes it harder for the urethra to seal around the urethra.

    If done early, a SP catheter may be an option, but if the urethra is already stretched out, it is likely that you would still leak quite a bit through the urethra unless you also have a sling surgery, bladder neck closure, or at least collegen injections around the urethra (which often must be repeated).

    An augmentation would make your bladder larger and allow you to return to doing intermittent cath, but again, if you were to do nothing about the urethra, you would likely leak significant amounts. A Mitrofanoff combined with the augmentation would make cathing much easier, but you would undoubtably need to also have a bladder neck closure, or at least a sling, to prevent leakage. This makes the surgery much more complex.

    Although not easy to do, a cystoscopy can be done through a Mitrofanoff stoma (flexible, not rigid), and of course stones can be removed by open surgery as well. Your risks for stones would go down significantly if you got rid of an indwelling catheter and went back to intermittent cath.

    I am surprised that Craig did not urge you to get a SP when you went with the indwelling catheter. They have been big endorsers of SP catheters for many years, at least until recently.

    (KLD)

  4. #4
    Quote Originally Posted by SCI-Nurse
    Unfortunately long term use of indwelling catheters can cause many problems. For women, one of the big ones is the risk for developing a patulous (stretched out) urethra. This causes problems with leakage because the catheter no longer seals around the catheter. Menopause can make this worse because the low estrogen levels also cause thinning and less elasticity and moisture of the urethra, which also makes it harder for the urethra to seal around the urethra.

    If done early, a SP catheter may be an option, but if the urethra is already stretched out, it is likely that you would still leak quite a bit through the urethra unless you also have a sling surgery, bladder neck closure, or at least collegen injections around the urethra (which often must be repeated).

    An augmentation would make your bladder larger and allow you to return to doing intermittent cath, but again, if you were to do nothing about the urethra, you would likely leak significant amounts. A Mitrofanoff combined with the augmentation would make cathing much easier, but you would undoubtably need to also have a bladder neck closure, or at least a sling, to prevent leakage. This makes the surgery much more complex.

    Although not easy to do, a cystoscopy can be done through a Mitrofanoff stoma (flexible, not rigid), and of course stones can be removed by open surgery as well. Your risks for stones would go down significantly if you got rid of an indwelling catheter and went back to intermittent cath.

    I am surprised that Craig did not urge you to get a SP when you went with the indwelling catheter. They have been big endorsers of SP catheters for many years, at least until recently.

    (KLD)
    Thank you so much for your response. My urethra is already stretched out, that is why I'm so concerned about what will happen with it regardless of what methods I decide to go for to empty my bladder. It does hold urine as I know when I change caths it doesn't immediately void, but the capacity is very small.

    I also was surprised that Craig didn't recommend that to me (well, retrospectively surprised) To be very honest, my experience there a few years ago for a overall check-up and chair fitting was really less than impressive.

    I'll look up those terms that you suggested, but are there different types of sling operations? And if anyone has had one done and would like to share their experiences, or if someone could point me to a thread that already discusses that - I'd be really grateful.

    I'm actually going to see the second urologist again today hopefully to get some more answers about these matters but I'm incredibly nervous about the whole thing. He's very much a 'surgeon' and I got the distinct impression from him that this follow up appointment is just for me to go there and tell him what I want. But I just don't know yet. It's a combination of not knowing enough facts (which a lot of doctors seem to expect you to learn on your own these days) and simply because after 24 years I'm really daunted by the idea of such huge changes. I am not entirely sure how he's going to respond to just having another appointment so I can ask questions.

    Another part of me is also wondering if, considering that I've had two entirely divergent opinions, I should perhaps try to schedule an opinion in the US when I visit there in December. And, if I decide to go ahead with one of these more complicated procedures, if I should have it done in the US instead of the UK. So much to think about!

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