Hello
I’ve just posted a thread about Mitrofanoff on Everyday Living. (See Mitrofanoff Prodedure for bladder dysfunction - Everyday living - MS Society UK | Forum I’ve include some detail about the procedure and my history for anyone who’s interested.) I know not all of you regularly read the EL forum board. If anyone has experience of the Mitrofanoff Procedure, I’d be very grateful for your thoughts.
Thank you
Sue
I’m going to find it on Everyday Living, cos your link doesn’t work for me. I’m sure it will be very interesting to those of us with misbehaving bladders (I can think of other words).
Thanks for the subject Sue
Chest x
Anyone got secondary progressive ms besides me ?
Lots of us. If you have a specific question, try posting a New Thread on Everyday Living or here (as I understand it, most of the users of the Primary Progressive board have PP, but some don’t). EL has a lot more users so depending on your thread topic, you might get more replies on there.
Sue
Hi Sue, well I enjoyed your thread on E.L. I’ve asked myself your question and, under the circumstances of your SPC being unsuccessful & my still existing problems 6/7 weeks ago from the SPC & infections, I’m uncertain of the risks.
I can offer no advice from experience of Mitrofanoff, but after reading the facts, weighing up risks v advantages, I’d be doubtful in going for it.
However, the Urologist may present more details and will know your bladder history, hence could give you personalised information before you make a choice. You’re certainly right in trying to gather more facts & hear from people who have Mitrofanoff. Sorry I can’t actually help.
C x
Thanks for reading and letting me know your thoughts Chrissie.
It is very much a question of seeing what the urologist has to say. But judging from the last time it was mentioned to me by a urologist, she seemed to think it’s straightforward and a simple matter. At the time I’d never heard of such a thing so went for the easy option of the SPC.
The Mitrofanoff Support group have a forum which is hardly used. The majority of comments on there are very positive. There are just a few that have reported problems with having had the procedure and / or with the actual Mitrofanoff means of bladder emptying. Sometimes it’s problems with the channel closing up, sometimes with bladder stones. Often there are problems associated with the Mitrofanoff, but not actually the Mitrofanoff itself, lots of people have bladder augmentation or bladder creation simultaneously, which can cause problems all of their own. At least I wouldn’t have that to worry about.
It would have been handy to have heard from someone with MS, particularly someone else with quite severe mobility issues, since that is what bothers me the most about the procedure. I worry that it will have a negative impact on my already limited mobility. But then, I had a colostomy last year and that didn’t have a real impact.
I suppose it’s more a case of worrying about the unknown.
At least the Mitrofanoff is reversible (I believe). So if it didn’t work, I could just revert to ISC or SPC.
Again thanks. It does help to concentrate the mind on potential problems and pitfalls, just to write out what my concerns are and to be able to have a sounding board.
The forum is marvellous for that.
Sue