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Thread: Has anyone had long term issues from mitroffanof?

  1. #11
    My daughter is a nurse and working with bladder and prostate cancer and she said in those four years she has been working there, it has been two people with SCI. She is scaring me and tells me it is worse smoking LOL, I smoke...
    TH 12, 43 years post

  2. #12
    can i say again that i think its time to find a new uro? your guy is definitely trying to talk you out of it. after 15 years of indwelling foley catheter i had no choice but to start looking for alternative answers because my urethra was so stretched out it was no longer staying in. several people suggested i get evaluated at hopkins and the uro there kept pushing the supra over the mitro and saying why would i want to deal with such a surgery and blah blah blah when the supra is so easy. i went to see a different uro and he immediately got that i had a life and wanted freedom and independence. since it had been 15 years my bladder was no longer able to hold anything so i did have to have the full augmentation. but the stuff he is telling you is so nothing compared to what you do every day as it is. i love my stoma and wish i had known about the surgery years before (my surgery was almost 10 years ago). i love that my husband can touch my legs and i dont have to worry about the bag. i love that we can go to the beach and i can wear a bathing suit and not have to worry about covering my bag. i love that my boys can climb up on me and i dont have to worry about them grabbing something they shouldnt. my stoma is smaller than a dime. pm me if you want to discuss this further because honestly i will talk you into it. i cant even begin to tell you how great it is to go to the airport and be frisked and not have to explain the long tube hanging from my leg is medical. i love it all and frankly everything these days will give you cancer. reports of microwaving plastic and excess cell phone usage. i am rambling now but you get my point.

  3. #13
    I did find a neuro Uro and she's awesome and all for it. I have just only heard some good stuff but wanted to know about the cons. I'm scared really

  4. #14
    of course you are scared. it is a huge decision and obviously one that shouldn't be taken lightly. but i can't even describe to you how amazing being bag free has been. i had several occasions while at work that my leg bag started leaking or it got too full and had strange buldges on my leg. frequently the cath would clog up and start leaking so i would be peeing all over myself. i hated it and was constantly embarrassed by it. i personally love mine and wish i had known about it so much sooner than i did. i realize you are only a couple years post injury but now at almost 25 years post injury i can honestly say that this surgery has been the best thing for my self confidence. i started dating my now husband while i still had the bag and he was obviously understanding so it clearly didn't affect that but the way i feel about myself and our relationship is 1000 times better without the bag. he will also tell you how awesome the surgery is. i dont have a supra and never have so i dont know how easy it is for it to get pulled out or leak but i love not having to worry about it. i love being able to go to disney and have my family get me on rides without worrying about who is going to feel what or if it gets tugged on while getting on and off rides (which happened in my bagged days). i love how cute my son was when he was 2 and was trying to figure out how to put my cath into his belly button so he could pee like mommy. i love that on an airplane i can throw an empty bottle into a bag and pee right from my seat without worrying about showing anything or having anyone really notice anything. i love not getting so many uti's. i love that when i was huge from pregnancy i could still be independent and cath myself. there is absolutely nothing i regret about my decision. i am a huge commercial but i trully believe in this surgery. is there something specific you are worried about or just the overall unknown?

  5. #15
    My only long term issue is bladder stones. For me they are caused by excess mucus. Excess mucus occurs when I have bladder infections. Eg. when I'm on anti-biotics and then afterward when infection free, I have almost no mucus. Get a few bacteria in there and I produce more mucus. (I had the augmentation, so might not be a big issue for those with just mitro). Since starting with Vetericyn, my infections & mucus are reduced and no stones in 6 months. I hope this continues into the future.

    Having said this, I wouldn't go back to pre-mitro days for a million bucks. I feel so free and unselfconscious (is that a word?) now.

    ETA: oh, my stoma is just below my underwear line so doesn't even show with a bikini. not sure if a complete quad could do this without finger dexterity, but if you can undue a button or zipper, it's a great placement option.
    Last edited by loreo; 11-22-2011 at 05:17 PM.

  6. #16
    Senior Member
    Join Date
    Apr 2010
    Rochester, NY
    i definitely feel that someone is trying to scare you. and i wholeheartedly agree with sabmother, i don't care about the scopes every 6months, this surgery was worth its weight in GOLD. i love knowing i can go to friend's houses and not worry about the bathroom, traveling is a breeze and i can have a busy life and just pee in my car if i need to! it's so great! absolutely no regrets. and the scarring is minimal. if you'd like to see, i can show you pics. people wouldnt know i had this if i didnt tell them, it just looks like my belly button did. freedom is everything! you should be cared, i was a little bit before the surgery, but i knew it was the right decision.

    nothing is without risk and hell, baby powder can give you cancer as well as grilled food! if you want freedom and flexibility then go for the mitro
    "Smells like death in a bucket of chicken!"

  7. #17
    It sounds like your most concerned about the augmentation, but that may not even be necessary for you. I would find out first if that was something you would need before you start worrying about it. I'm a C6-7 quad, and I had the mitro 12 years ago (when I was 12 yrs old), no augmentation, and haven't had any problems. As I recall, the uro did a test to see how much fluid my bladder could hold before leaking, and since it held a very good amount, no augmentation was necessary. You may be the same!
    "But the world must learn that I love the Father and that I do exactly what my Father has commanded me." John 14:31

  8. #18
    Hi Rachel, my 19 year old daughter, Kristyn, is a C6/C7 quad as a result of a car accident on 7/3/10. She had the Mitrofenoff done on 12/6/2010 and we have had NO regrets. It has made her life and ours much easier. She continues to work on independence with self-cathing and I think we will be there soon. The scarring is not bad especially if they just use your belly button and the risk of complications goes down if they use your appendix and do not have to do bladder augmentation. Pediatric urologist are far more experienced in this procedure because it is used a lot in kids with Spina Bifida, and most are very happy to see and treat young women such as yourself and my daughter. You just have to find the right person. Good luck and let me know if you have any other questions. I love you FB site and plan to share it with Kristyn. She could use some motivation and your enthusiasm and strength through this adversity is very inspiring. If you feel so inclined, please contact her on FB .... Kristyn Osterhaus.

  9. #19
    Thank you Jackie for your kind words!! I will definitely need the augmentation. That's what scares me!!

  10. #20
    I've had both since 96. Stoma in my belly button. Big surgery, did mine in the summer due to work. Took time to get it right. I'm a c6 complete. It's the best thing I did in managing my care. Call me if you wish.
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

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