9 replies to this topic

[dsindc]

Following my spinal cord injury, I am electing to have the Mitrofanoff procedure, which I am excited about - to finally cath independantly.

Surgery is in two weeks at UCLA. My doctor also intends to do bladder augmentation. I have my doubts about this.

My bladder never leaks unless I have a UTI. When I am infection-free, it holds 400 cc before I am desperate to cath. That's pretty good and you would think I should not need to surgically enlarge it.

When i had my pre-op urodynamics test done, I had a UTI. So of course I could only hold about 150 cc before spasm/leaking, hence her decision to do bladder augmentation.

Even if I get bladder augmentation- say I have a UTI- won't it still leak/spasm no matter its capacity?

Should I opt out of bladder augmentation? Do I really need it? I am tempted- to avoid all that pain/extra complications.

But on the other hand, I also hear the SCI bladder shrinks over time so I might as well have it done now and avoid being opened up twice?

Any words of advice by those who have experience with this would be much appreciated..

[greybeard]

Hi dani. Can't advise about the surgery, but wanna wish you the best.

[S&W Winger]

HI Dani...wishing you good luck as well...please keep us posted...that is my only hope of helping keep these blasted UTI's at bay...I have a SPC, as I cannot self-cath, and look forward to do so in the future...as I have an indwelling and my bladder has shrunk, I have no option...hopefully someone will post who has...take care!

[Smileyblue]

Hi there.. ;-)

I had this surgery about 3 weeks ago, but sadly I'm not cathing yet due to a complication.. The Mitrofanoff is blocked/closed at the entrance to the bladder.. I'm undergoing surgery tomorrow to have the entrance opened.. ;-) I cant wait for all these hiccups to be over with so that I can start using it..

As far as the bladder augmentation goes, discuss your doubts with your doctor once again.. What I have noticed, which I'm not quite happy with, is that the mucous that the membranes give off tend to block the catheter.. I'm a little worried that when I start cathing through the Mitrofanoff, as that requires a much thinner catheter, it might block up quicker and therefore not drain the bladder completely..

If I can be of any further assistance, feel free to PM me.. ;-)

[greybeard]

Hi there.. ;-)

I had this surgery about 3 weeks ago, but sadly I'm not cathing yet due to a complication.. The Mitrofanoff is blocked/closed at the entrance to the bladder.. I'm undergoing surgery tomorrow to have the entrance opened.. ;-) I cant wait for all these hiccups to be over with so that I can start using it..

All the best for tomorrow.

[nomis]

Time is running short, dsindc, for you to have a clarifying discussion with your doctor. From what you say it seems odd to go ahead with the augmentation but I suspect your doctor has some more information that would explain. Whatever, you need to have all the info to make an informed decision.

I had an augmentation done some 18 years ago and it's been fantastically successful. I can't remember when I last had a uti (and they used to be common to me) so I can't comment on leakage. Mucus is present but not a problem for me but Smileyblue's warning makes good sense and is a consideration.

You're the boss so go get that info from your doctor and the best of luck for an excellent and quick recovery.

[Oceanlover74]

Hi there.. ;-)

I had this surgery about 3 weeks ago, but sadly I'm not cathing yet due to a complication.. The Mitrofanoff is blocked/closed at the entrance to the bladder.. I'm undergoing surgery tomorrow to have the entrance opened.. ;-) I cant wait for all these hiccups to be over with so that I can start using it..

As far as the bladder augmentation goes, discuss your doubts with your doctor once again.. What I have noticed, which I'm not quite happy with, is that the mucous that the membranes give off tend to block the catheter.. I'm a little worried that when I start cathing through the Mitrofanoff, as that requires a much thinner catheter, it might block up quicker and therefore not drain the bladder completely..

If I can be of any further assistance, feel free to PM me.. ;-)

Hi Smiley... I am new to this site but belong to bladder extrophy site which u should check out.
Many people on there have had mitrofinoff surgery...including me. I wonder how everything
Went ?? How is the mucos?? R u draining ok? If u have Any questions,
Please don't hesitate to ask. I have bladder extrophy ... I have had 20 surgeries
With my most recent and hopefully last being augmentation and mitrofinoff...that was in 2008.
Everything has been going good since then....so again ....feel free to ask away take care.

[Smileyblue]

Unfortunately, the Mitrofanoff failed and I can't cath through it (completely sealed and could not be reopened).. They gave me the option of re attempting using a piece of bowel instead of appendix in 6 months time, however I'm opting not to.. I recently had DREZ surgery (which appears to have worked for the most part) so I will be able to self cath normally as the legs spasming shut was my only obstacle..

Thanks for posting the information though, as I'm sure it will help others in future, searching for answers.. ;-)

[quadison7]

Unfortunately, the Mitrofanoff failed and I can't cath through it (completely sealed and could not be reopened).. They gave me the option of re attempting using a piece of bowel instead of appendix in 6 months time, however I'm opting not to.. I recently had DREZ surgery (which appears to have worked for the most part) so I will be able to self cath normally as the legs spasming shut was my only obstacle..

Thanks for posting the information though, as I'm sure it will help others in future, searching for answers.. ;-)

Smileyblue,

hello, I just came across your response to a post you left in regards to the mitrofanoff/augumentation surgery. I've been dealing with unending UTI's for far too long and am seriously considering the surgery for myself. Given that you have already endured the surgery, can you please give me any insights on what to expect or how it has personally worked for you. Would you deem it a success overall? I know you had difficulties in the beginning, but how about now?

[Smileyblue]

Nope, my difficulties were not only in the beginning, they are permanent.. The Mitrofanoff procedure failed.. And so has the DREZ surgery sadly..

Expect a large scar across your abdomen and a reasonably long recovery time as they cut your intestines.. At least 6 weeks.. The surgery was below my sensory level so I didn't have much pain from the surgery itself, but I did find that my usual pain was worse for a while..

I had the bladder augmentation at the same time and fortunately that worked.. Only negative there so far is the mucous in the urine.. It can clog the catheter, but its getting better as time goes by, and I've been told it will reduce even more with time..

I'm afraid that's all I can tell you.. Everyone who I have spoken to regarding the Mitrofanoff have all been EXTREMELY happy with having the procedure done..

Good luck with your surgery if you do decide to have it.. ;-)