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Experiences with Mitrofanoff and/or MACE Procedures?

BrookeUBrookeU Posts: 149Moderator Moderator
100 Comments 25 Likes 5 Awesomes Photogenic
in Bowel / Bladder
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!

Comments

  • foodpro07foodpro07 Posts: 5Member ✭
    Name Dropper First Comment
    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. 





  • BrookeUBrookeU Posts: 149Moderator Moderator
    100 Comments 25 Likes 5 Awesomes Photogenic
    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.
  • married11307married11307 Posts: 11Member ✭
    10 Comments Name Dropper
    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. 
  • garrisonreddgarrisonredd Posts: 102Moderator Moderator
    25 Awesomes 25 Likes 10 Comments First Answer
    I am happy to hear that @married11307 independence is the key 
  • BrookeUBrookeU Posts: 149Moderator Moderator
    100 Comments 25 Likes 5 Awesomes Photogenic
    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!
  • BrookeUBrookeU Posts: 149Moderator Moderator
    100 Comments 25 Likes 5 Awesomes Photogenic
    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!
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