Page 2 of 2 FirstFirst 12
Results 11 to 18 of 18

Thread: Mitrofanoff scheduled for April and I've never been more terrified

  1. #11
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
    Posts
    18,240
    My best friend is quadriplegic for 29yrs. She had a supra for most of that time and her bladder started to degrade at the same time mine did. Surgeons put in a new supra, gave her botox to bladder ... and just this week she is able to go 3hrs with just clamping as before.

    I'd hold off on the mitro as a last resort.
    Make America Sane Again. lol

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  2. #12
    Quote Originally Posted by SCI-Nurse View Post
    If you are having part of you intestine place on your bladder, you will most likely still have drains in at 3 weeks and be feeling pretty sore. Not sure why you can't take Gabapentin? We don't stop that in our patients-!? Chance of cancer- with SPTube- about 8-10% after 8 years-pretty rare. The mitranoff can leak also. And you can get cancer in the part of your intestine put on bladder also!
    You must follow the exact instructions of doctor and slowly build up your capacity. Once they say you can cath you will be doing every 2 hours for a week , then very 3 hours , then every 4 hours. You must irrigate catheter as with bowel you will have mucous for the first year atleast.
    It is a major, major surgery!
    CWO
    10% after 8 years is worse than I thought! I got the sp when I was 25 and am now 31. What about when I'm 50? I feel like it's inevitable. Ugh I hate SCI. Myurologist at UNC said the cancer risk associated with mitro is much less

  3. #13
    No, I have never seen it except in one person- higher risk for smokers.
    But bladder aug is good- it is just a major post op recovery and the irrigation of bladder d/t mucuous. but after it has expanded and everything good it will be worth it.
    CWO

  4. #14
    Senior Member
    Join Date
    Apr 2016
    Location
    Cincinnati, Ohio, USA
    Posts
    1,097
    This is very preliminary stuff but points to a non-invasive method for bladder augmentation in SCIs with NGO:
    http://www.tandfonline.com/doi/abs/1...nalCode=yscm20
    T3-T7 complete since Sept 2015

  5. #15

  6. #16
    [QUOTE=SCI-Nurse;1824936]No, I have never seen it except in one person- higher risk for smokers.
    But bladder aug is good- it is just a major post op recovery and the irrigation of bladder d/t mucuous. but after it has expanded and everything good it will be worth it.
    CWO[/QUOTE

    Will I have bowel accidents for a long time?
    i push on my stomach to give me a blood pressure boost. Will I eventually being able to do that
    do I literally have to wake up every 2 hours to cath at first?
    Will it lessen my cancer risk?
    I was told I'd need a sling at my opening below to prevent constant leaking. That sounds dangerous because what if I get clogged?

  7. #17

    Needed info on Mitrofonof

    Hello, can you please contact me . I am interested in getting this procedure done and would like to speak to your daughter about pros & cons before doing it, to ease my mind. If you can have her contact me, I would greatly appreciate it. My name is Hanane and I am a paraplegic. Thank you in advance.


    Quote Originally Posted by Domosoyo View Post
    My daughter's experience with hers has been very positive. We cathed from below for two years before getting the surgery done. My daughter wanted nothing to do with a leg bag after her injury at 12. When she started high school she wanted the independence of not being tied to transfers for cathing. Seriously, we did that for two years. In high school she never found a cath that she could completely do independently so most family and some friends were trained in cathing form her Mitrofanoff. She is now in college and found the cath that works for her the best and is completely independent. She can cath herself in bed or even in the van if she feels like it ha! (We cath on plane trips too but I usually handle that.)

    Her doctor used her appendix as the conduit and the opening is in her belly button. Her bladder was big and round so she did not require a bladder augmentation which is a longer recovery. Recovery was three weeks at home with a foley, a trip to the doctor to take that out and to train us how to cath. This was hands down one of the best decisions we made together.

    We haven't had many downsides. I don't know if we lucked out with our surgeon or what. A couple times a year it is a little more difficult to get the cath in. Mucus buildup or just a poor entry seem to be the main culprits. If it is really tough we just leave the cath in for a day and cap/drain as needed. Repeat next day and that is enough to create a nice smooth entry again.

    Feel free to PM me with questions or if you would like my daughter's contact info. She is always very happy to talk with any female quads and she follows you on social media.
    Last edited by SCI-Nurse; 05-28-2017 at 09:12 AM. Reason: Removed phone number

  8. #18
    Quote Originally Posted by Hanouna View Post
    Hello, can you please contact me . I am interested in getting this procedure done and would like to speak to your daughter about pros & cons before doing it, to ease my mind. If you can have her contact me, I would greatly appreciate it. My name is Hanane and I am a paraplegic. Thank you in advance.
    Hanouna, I have removed your phone number. It is most unwise to post on a public internet forum information such as your personal phone number, address, or personal e-mail address. Please use the PM function here to contact members personally, and you may want to turn on your personal e-mail contact option from your profile. This allows another member to send you an e-mail without actually seeing the e-mail address, from your public profile page. Thanks!

    (KLD)

Similar Threads

  1. Replies: 2
    Last Post: 10-13-2009, 09:47 AM
  2. MY Mitrofanoff/Monty Scheduled...
    By WheelieMike in forum Care
    Replies: 8
    Last Post: 05-11-2009, 10:05 AM
  3. I am terrified and need answers
    By Rosie in forum Pain
    Replies: 11
    Last Post: 07-30-2007, 04:18 AM
  4. KATIE Samson Lacrosse Fest scheduled for April 17
    By Max in forum Funding, Legislation, & Advocacy
    Replies: 1
    Last Post: 03-24-2004, 04:58 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •