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Thread: mitroffanoff experience

  1. #231
    Quote Originally Posted by daniellegaubert View Post
    The urologist I am seeing in Louisiana wants me to have botox injections instead of the mitroffanoff procedure. I was looking to get away from having to transfer to the toilet. I'm C6-7 quad and am able to catheterize myself on the toilet at my house but no where else bc my balance and transferring isn't great. His idea is that I will be able to stay gone for 6 hrs without having to cath. But even then I will still have to run back to my house to cath.
    I have a 4 year old who is going to be active in sports. I think the diversion would be more of a feasible route for me to take. Anyone from Louisiana? Or does anyone know how I can find a doctor here who is comfortable with doing these type of procedures.
    Hi All,

    You could try this technique until you see your doctor. Also, get a C&S done, not just a urinalysis. Odds are you have a heavy bacterial colonization brewing in your urinary tract making you spasm and leak.

    Can't you cath while in your wheelchair, using a chux or a heavy towel between your thighs to absorb any overflow?

    Bob.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  2. #232
    Quote Originally Posted by daniellegaubert View Post
    The urologist I am seeing in Louisiana wants me to have botox injections instead of the mitroffanoff procedure. I was looking to get away from having to transfer to the toilet. I'm C6-7 quad and am able to catheterize myself on the toilet at my house but no where else bc my balance and transferring isn't great. His idea is that I will be able to stay gone for 6 hrs without having to cath. But even then I will still have to run back to my house to cath.
    I have a 4 year old who is going to be active in sports. I think the diversion would be more of a feasible route for me to take. Anyone from Louisiana? Or does anyone know how I can find a doctor here who is comfortable with doing these type of procedures.
    An augmentation would be a surgery to enlarge your bladder and decrease spasm and leakage. That would be roughly the same as trying the Botox injections. Neither has anything to do with a Mitrofanoff, which could be done alone (to allow cathing through the abdominal wall instead of the perineum in a female), but often the two surgeries are done at the same time.

    I would inquire at a children's hospital or look for a pediatric urologist who may be more familiar with doing a Mitrofanoff, as they have been done more for children with spina bifida in the past that for people with adult onset SCI. Whether or not you ALSO need a Botox trial or an augmentation should then be explored as well. I assume you have had urodynamics? What was your bladder maximum pressure (PdetMax)? Capacity?

    Have you tried learning to cath in your wheelchair?

    (KLD)

  3. #233
    I'm a c6/7 also. Kudos on the transferring skills-I'm impressed. My mom has had the botox for urges and says it helps a lot. I cath in my chair in restrooms. I don't know if you ever tried but it might be a solution to going home. PM me if you want any details.

  4. #234
    I decided to post here in case anyone following this thread could help.

    Second, I have finally decided to go for a Mitrofanoff procedure so hopefully I can catheterize myself without the need for help or getting transferred into bed to do it. I read through the giant mitrofanoff thread (it was a great resource) but my question is about finding a good surgeon close to me and I’m afraid it might get lost in the giant thread.

    I live in Northern Iowa so I can probably travel anywhere in Iowa or Minnesota to find a good surgeon. Did any of you that have had the mitrofanoff find a good surgeon in Iowa or Minnesota? I read that I probably want a pediatric urologist and I have absolutely no clue if there are any near me.


    Thanks so much for all the assistance and support you’ve given me in the past. I am really scared but excited to try to get my life moving forward again after all these years. Melissa
    Life is a lesson you learn when you're through.

  5. #235
    Quote Originally Posted by melliska View Post
    I decided to post here in case anyone following this thread could help.

    Second, I have finally decided to go for a Mitrofanoff procedure so hopefully I can catheterize myself without the need for help or getting transferred into bed to do it. I read through the giant mitrofanoff thread (it was a great resource) but my question is about finding a good surgeon close to me and I’m afraid it might get lost in the giant thread.

    I live in Northern Iowa so I can probably travel anywhere in Iowa or Minnesota to find a good surgeon. Did any of you that have had the mitrofanoff find a good surgeon in Iowa or Minnesota? I read that I probably want a pediatric urologist and I have absolutely no clue if there are any near me.


    Thanks so much for all the assistance and support you’ve given me in the past. I am really scared but excited to try to get my life moving forward again after all these years. Melissa
    You should probabley check with Susan Maus, she probabley knows of a good surgeon as she is from MN.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  6. #236
    Quote Originally Posted by Curt Leatherbee View Post
    You should probabley check with Susan Maus, she probabley knows of a good surgeon as she is from MN.
    Thanks, Curt. I will look her up. Happy holidays! Melissa
    Life is a lesson you learn when you're through.

  7. #237
    I'm thinking Kristi had hers done at Mayo in Minn. Look her up too.
    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

  8. #238
    Quote Originally Posted by november View Post
    I'm thinking Kristi had hers done at Mayo in Minn. Look her up too.
    Thanks, November. I know she's not too far from me. I'll PM her. Thanks, Melissa
    Life is a lesson you learn when you're through.

  9. #239
    As for me, cathing from my chair is probobaly do-able but the problem is getting my pants and underwear up and down.
    I have had urodynamics. I go back to the urologist on 1/10. I will find out my bladder maximum pressure and capacity. So if I had the mitrofanoff proceudre done without the augmentation, I could get Botox injections? Another problem is that all I have is Medicaid and since botox isn't FDA approve it won't pay for it and it is pretty pricey.

  10. #240
    I would suggest that you start at the Mayo Clinic or call Sister Kinney Institute in St.Paul-Minneapolis and see who they would recommend.
    Good luck and keep us posted.
    CKF

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