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Has anyone had long term issues from mitroffanof?

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    #16
    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!"
    http://www.elportavoz.com/

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      #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

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        #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.

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          #19
          Thank you Jackie for your kind words!! I will definitely need the augmentation. That's what scares me!!
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            #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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              #21
              No problems with mine although I know a few women on CC that have had probs w/ leaking and/or scarring. Got mine in 2005 I think. I was 2 or 3 yrs post sci...something like that. Got tired of having to lie down to cath. One of the best things I did.

              I had a supra pubic for only 2weeks during recovery and I agree wearing a tube and bag wasn't for me!
              Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

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                #22
                If you choose the mitro route, go with doc that does belly button only! I am ok w my overall result w/exception to location (to right of bb). My doc switched my marking right before surgery :/ Took me forever to accept this little bullet hole in my stomach, still think it's yuck. The bb ones are much better. Otherwise, it is worth doing.
                "The sweet is not as sweet without the bitter"
                ~"Vanilla Sky"~

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                  #23
                  I had mine done in 2000, mitro only which is a much less complicated procedure. Of all the options out there for female quads and bladder management this surgery is a no brainer. Everything about this injury is going to scare you but this procedure is definitely worth it. I'm surprised you need the aug, though. You haven't been injured for that long, I would figure your bladder would still be able to hold enough to not have to have the aug. Having a cath in 24/7 can cause cancer, as well, plus so many other cons. My doc was a pediatric uro and talked me into this. He used my appendix and made the hole in my bellybutton. You can't tell it's there. Btw, this is Kim from Greenville. I think I talked to you about this procedure when you were in rehab. I'm glad you are considering it.

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                    #24
                    I have the mitro with Aug. lower right abdomen. Never had any issues & I actually honor my long scar & "blowhole" for giving me control & freedom. My only question is with pregnancy, how would the belly button positioning work? I had no issues with my pregnancy & cathing but wonder about the bb. Anyone have experience to share?
                    "We must become the change we want to see in the world." Gandhi

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                      #25
                      My mitro was done in '05 two years after my accident. I also had a pediatric urologist who focused mainly on children with Spina Bifida too. He used my appendix and did not do an aug. He is an AWESOME doc!! I would do this 1,000 again if I had to. It has made my life so much easier. No bags attached when I go out in public. I drain into a disposable kit on a schedule and go one with life. If you ever want to talk feel free to pm me and I will give you my phone number or we can skype if you want. I have no problem showing you my scar and opening as well as the type of closed disposable cath's that I use which really have helped cut down on the uti's (I still get a uti every couple of years or so now, but it usually happens when I am in a hurry. Before I wasn't even able to kick them with IV antibiotics). I have a bunch of spare unopened sterile cath's I could send you if you haven't tried that type of setup yet. They are really great!!! Nothing to wash. Just throw the whole works away. Best of luck! Janet

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                        #26
                        I got the Mitro surgery in 2007 and only have had the normal mucus issue. I love it. I'm C5/C6. I feel great about cathing every 3 hours, which I can do myself because of my tendon transfers on both of my hands. Mitro works great for my lifestyle.

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