Experiences with Mitrofanoff and/or MACE Procedures?

BrookeU

Hi! My brother would like know if anyone here has had the Mitrofanoff procedure or Malone antegrade continence enema procedure done before. If you have, please share your experiences with it and how it affected your quality of life and independence!

foodpro07

Hi. My son (T6 para) age 19, had both a Mitrofanoff and MACE procedures done almost 2 years ago. He became paralyzed 4 years ago through an illness. His Pediatric urologist at the time recommended these procedures so he could be more independent and have less UTI’s. However the surgeries did not go well for him. He had an infection and the Mitrofanoff had to be undone and he now has a suprapubic catheter temporarily. The MACE never did flush well. He actually got better results from anal irrigation. He is having the MACE surgery reversed. 
I have heard that these procedures can be very successful for some people but unfortunately for him they did not work. 

BrookeU

Thanks for responding, @foodpro07! My brother actually had a Mitrofanoff procedure a while back that did not go well and also got the suprapubic cather, which he still uses. He's hoping to have the Mitrofanoff done correctly this time around and to go around and get the MACE done at the same time. I'm sorry your son had a negative experience; I know how disappointed my brother was (and continues to be) about his failed procedure.

married11307

My daughter has been paralyzed for a year now due to a auto accident. Shes going to be 14 on the 28th. She just a month and a half ago had these 2 surgeries and they are amazing. She loves that she has her independence back. 

garrisonredd

I am happy to hear that @married11307 independence is the key 

BrookeU

That's so wonderful to hear, @married11307. I was definitely a 14-year-old who wanted to be independent more than anything (14 going on 30), so I'm happy she has that feeling!

BrookeU

My brother's surgery is scheduled for May 31, so any advice you have between now and then (or after, for recovery) is much appreciated!

Powerwheels1980KM

I am 40 years old and have Cerebral Palsy. I had a spinal surgery for this and then another for scoliosis (fusion from T3- my pelvis) Long story but my nerves from T11 to L3 are stuck together (Adhesed) I have lost Bowel and Bladder control and sensation from my waist down. I had a Mitrafanoff and MACE down the end of last year because transfers for toileting became very often and exhausting. After surgery they found an obstruction higher in the colon and I was in the hospital for a month and it finally passed but ruined the new channels, but because I didn't have any more time off work I had to use a foley and a 2 piece colostomy bag over the MACE since then. In a week I am going in for a revision to hope regain my independence with bowel and bladder management. Since I am an adult (who happens to work in both pediatric and adult healthcare settings) I am wondering if if there are adults who have had these procedures? Or for parents have your pediatric physicians spoken to you or your child about managing these things as an adult? My experience is we do a higher level of care in the pediatric world and the transition to adult care can be very difficult. My surgeon is pediatric and does the surgery on adults and follows them. The challenge I have run into is he does not have privileges at the adult hospital outside of doing the surgery and the post-op admission. Anyway I know this a lot but please feel free to answer/address parts or all aspects of the post. I appreciate all perspectives as I try to prepare for this surgery.