Mitro Revision - what to expect?

[Emi2]

Well the homecare nurse came and took the mitro foley out on Tues. morning, I cathed 2x with some difficulty but figured I just needed to find a new angle or something. The 3rd time I could not get the catheter in so had to go to ER where after an hour they finally drained 600cc plus whatever had totally soaked my clothes by then. came home with a foley throgh urethra. Saw uro this morning, he couldn't get catheter through mitro either so now I have to get a more major revision with a plastic surgeon involved too to move my stoma out of my belly button. Probably not until Sept. though so I'm stuck with the foley until then. Boy am I glad I never let the Uro close my urethra like he wanted too!
I forgot to ask the Uro if my augmented bladder could still shrink?

So I'm frustrated, annoyed, disapointed. I hate SCI - wish I could be normal!

[november]

Originally Posted by Emi2

Saw uro this morning, he couldn't get catheter through mitro either so now I have to get a more major revision with a plastic surgeon involved too to move my stoma out of my belly button.

I was told from the beginning by my Uro he has seen people have more problems with scarring and it being a bad angle for cathing when it's placed in the belly button. He refused to put it there and told me I would have to find another Uro to do it if I wanted it like that. I understand for cosmetic reasons some people want it there, but you can barely see mine anyways. It's about 1/4 size of a dime and way below my pantsline. No problems with it yet...I'm glad I listened to him.

Hope everything works itself out Emi.

[SCI-Nurse]

Emi-

Just a thought but you may want to contact or go to see another urologist to get a second opinion. It may be worth the effort and time to give yourself potentially other options or to know that unfortunately there may not be any other choices.

CKF

[Emi2]

Unfortunately I'd have to go to a different city to see another Uro with mitro experience

[chick]

Originally Posted by Emi2

Well the homecare nurse came and took the mitro foley out on Tues. morning, I cathed 2x with some difficulty but figured I just needed to find a new angle or something. The 3rd time I could not get the catheter in so had to go to ER where after an hour they finally drained 600cc plus whatever had totally soaked my clothes by then. came home with a foley throgh urethra. Saw uro this morning, he couldn't get catheter through mitro either so now I have to get a more major revision with a plastic surgeon involved too to move my stoma out of my belly button. Probably not until Sept. though so I'm stuck with the foley until then. Boy am I glad I never let the Uro close my urethra like he wanted too!
I forgot to ask the Uro if my augmented bladder could still shrink?

So I'm frustrated, annoyed, disappointed. I hate SCI - wish I could be normal!

It is surprising that the catheter would have such trouble going in so soon after the revision, with not enough time to have too much scar formation. Are you definitely having another revision or does the healing process need more time with a foley in place?

Are you thinking of having it placed lower? My uro felt the same as Nov's Dr., preferring to place it lower, closer to the bladder. But due to my limited hands (no finger dexterity) and not likely able to reach too low on abdomen, he compromised to area just below and to the side of belly-button (around my, then, pant line). I can now better manage cathing and with most all my pants being low-rise, pants are less an issue.

I am also considering another revision - to take out recurring scarring (already had 2 revisions), and consult about placing mitro lower (in fresh flesh/tissue where there hasn't been repeated trauma), IF that would help minimize/reduce/prevent scarring.

What are SCI nurses thoughts on that (new placement of stoma in fresh tissue)?

Emi, I also had pretty difficult period after 2nd mitro last fall - with very extreme low blood pressure, making me pass out for a long period (almost seizure like) and difficulty draining thru foley. But now, only issue is with the stoma tissue, incl possible infection (bleeding, swelling, stuff).

Keep your head up. Problems can be resolved...sometimes just takes some longer than others.

[SCI-Nurse]

I would think that trying another place where the tissue is fresh without trauma makes a olot of sense. It does mean another revision and all that goes with that, but it is probably worth it.

FYI- Emi-

I would think that you could call another urologist and consult with him over the phone to get another perspective. But that is your call.

CKF

[SB mom]

My son had mitrofanoff and bladder aug. surgery in 2006 when he was 13. Recently he was unable to get a cath in. His pedi uro (the only one within 3 hours drive) has left and we had not been to see a new uro yet. They got us in immediately after I called and explained the situation. The doc was unable to get a scope in and finally called in another doc who WAS able to get a scope in the stoma. Urethra too damaged from scar tissue from past false tunnel surgeries to get scope or catheter in there. Apparently the mitro tunnel is twisting and has a small bend.
He now has a foley. On Friday they are going to have him try to cath with a coude tip. If that doesn't work they will discuss revision/reconstructive surgery or a bag.
Has anyone had experience with twisting/bending? or surgery to correct this?

[Sue Pendleton]

Emi, If you still want to talk about why and should you move the stoma during the revision try emailing or calling this guy http://www.urology.wisc.edu/profile/wade-bushman . He's my new neuro-uro and while busy actually gives real reasons when we spoke about placement if I need to go that route and he knows about and includes your finger function and other possible problems. He, IIRC, likes the right side as the descending colon is on the left. I basically wanted a new bladder made from my own stem cells like the one I read about several years ago with a picture! I learned why those are not being used... No one has been able to duplicate growing a bladder and there is no proof there are actually bladder stem cells. He is both a doctor who sees patients and does procedures but has his own lab, I'd use that number or email, for basic to advanced research. He also spent about a decade at the Rehab Institute of Chicago so knows SCIs as it always ranks in the top 4 here in the US.