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Thread: mitroffanoff experience

  1. #241
    Hi Danielle,
    I've adapted my underwear and pants to avoid the up and down problem. Let me know if you want the info on how. Good luck with your appointment on the 10th and insurance issues.

  2. #242
    Quote Originally Posted by SCI-Nurse View Post
    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

    So far I’ve called Mayo, Iowa City, and Sister Kenny. (I’m still waiting on a call back from Sister Kenny.)

    I told them I needed a surgeon for a mitrofanoff and that pediatric urologists are usually experts in it, but each time they told me I couldn’t see a pediatric surgeon because I was an adult.

    Mayo told me that they had a doctor Douglas Husmann that they thought would be the right doctor. They were pretty sure he did mitrofanoff’s, but it seems like no one knows for sure.

    Iowa City said that I would see a doctor Ericson. They said he had only ever done the surgery on men, so I wonder if it’s even the same surgery. They also said they have another urologist that I might have to see if Ericson wasn’t the right doctor. Iowa City is about 4 hours from here and it can take months to get an appointment so I don’t really want to go if that doctor isn’t the right one.

    I feel like maybe I’m not doing something right when I call. Is there a person in a particular position that would be best to talk to when I call about finding a surgeon? If anyone from Spinewire/Carecure has had a mitrofanoff done in Iowa or Minnesota and liked their surgeon, I will just go with them because it would be so much easier. I PM-ed Kristi and Susan M so hopefully I will hear back from them, and one of them will have had their surgery close to me.

    Thanks for all the help. Melissa
    Life is a lesson you learn when you're through.

  3. #243
    Senior Member
    Join Date
    Dec 2006
    Location
    western MA USA
    Posts
    255
    Some of the delay and confusion in finding a suitable urologist to perform the mitrafanof procedure is that many urologists refer to the procedure in different terminology. Apparently there are urinary diversion procedures that pretty much do what mitrafano does. I live in Massachusetts and had the surgery about 6 years ago at Lahey Clinic. I had trouble finding a urologist who was known as perfortming mitrafanof however many urologists are listed as specialists in urinarydiversion and neurogenic bladder etc.

  4. #244
    thanks to everyone who contributed to this thread. I have read it several times. I'm headed to the hospital tomorrow to do my bowel prep for my bladder augmentation and stoma surgery on Thursday. Scared, excited and impatient all at once. After hearing that IC was the “gold standard” in rehab, my husband insisted that he and my caregivers cath me every 4 to 6 hours for the past 15+ months. It didn't help that I got bladder infections the few times I had a Foley in. I'm so hopeful that I will be able to cath myself. I also have been experiencing many problems with bladder incontinence the past six weeks and my bladder pressures were very high in my last urodynamics study, thus the need for the augmentation.

    Thanks again. I'll come back and post my results when I am recovered. I'm still flying on a post-Super Bowl Packer high (as we all are in Wisconsin!) so I hope that gets me through the rough days ahead.
    C5/6 complete 10/27/2009 MVA

    "I'm going to try defying gravity." Elphaba in "Wicked"

  5. #245
    Senior Member
    Join Date
    May 2005
    Location
    mercer, wisconsin
    Posts
    152
    good luck mary! i know that i have not had one moment of regret since having my surgery. hope you have the same experience.

  6. #246
    Good luck, and definitely keep us posted about your journey!
    CKF

  7. #247
    Here is an update on my bladder augmentation and stoma procedure. As everyone noted above, the first week was tough. I was in the hospital one week and dealt with some complications like blood loss and E. coli infection in my urine. It is now 13 days out and I'm feeling much better. I still have catheters in my urethra and belly site, but they should be out in the next week or so, according to my urologists PA. I saw her today to get my staples out. I can't believe that I will actually be cathing myself in the near future!

    ima2003, thanks for your positive note! I read it during a dark time in the hospital and it really lifted my spirits. I'll keep you all updated.

    My only real complaint is, does a 120 pound woman really need to drink a gallon of Golightly!! My stomach was extended and so painful after I did that!
    C5/6 complete 10/27/2009 MVA

    "I'm going to try defying gravity." Elphaba in "Wicked"

  8. #248

    Urethral strictures

    Hey All,

    Great resource. Just found it tonight and has pulled a lot of the veil off the procedure. Hats off to everyone.

    Briefly, had a prostatectomy 2008. Have dealt with bladder neck strictures ever since. Surgery every 4-6 months to cut out the scar tissue, scarring always returns. 2 stents placed, chemo injected into scar...blah, blah. Sphincter was removed in hopes of a AUS. Became totally incontinent two years ago. 52 years old, active and raising a young family. Over the diaper life and am meeting with my urologist/and reconstruction specialist at Mayo Clinic MN in April for cysto and consult.

    Mitroffanoff I think is going to be one of their suggestions. I didn't realize all the complications that can ride along with this surgery. Seems I may not have any other options. Appears that majority of people here are glad they did it in the end and was worth the pain and nonsense of a serious operation. I would imagine (hoping) that the happy campers don't post (they're out there happily peeing away) as much as those that are dealing with negative complications.

    A few questions: I guess my bladder has atrophied, can this come back to normal without surgical intervention? Even without a sphincter I have to get up every 2-3 hours to urinate at night. Still have sensation, urgency when sitting or laying down. Any other prostate cancer guys out there on this forum that have had this procedure and are willing to share their experiences? How can urethra be shut down, down under? Do you leak there anyway? How long until I can expect to get back to work after surgery supposing everything goes well (don't work a desk job, but not that physically demanding either)? Trying to schedule my life around this surgery.

    Best wishes,

    Deeder

  9. #249

    Is it worth it

    This is my first post here, but I have practically read every post in this thread.

    I am a 26 year old girl with congenital spinal cord disorder that has rendered me paralyzed from waist down. I am dependent on wheelchair and need catherization for urination.

    Right now, my mom helps me with it and I have practically no independence whatsoever. I can't go out of the house for more than 4-5 hours and even then I need to wear diaper as I need catherization every 1-2 hours.

    In short, its a sucking life. I am totally hating it.

    This surgery, Mitranfoff has come up as a ray of hope for me. I am thinking of getting it done. But need your advice and help on it.
    1. Does it really help you get independence?
    2. Is it painful in long run, I mean, post surgery and recovery, does it still hurt?

    My mom is really terrified of this and thinks that it is going to make my life even worse. How do I convince her for this?

  10. #250
    Megda,
    Maybe if your mom was able to speak with, or meet, another person with a mitrofanoff it would help her realize the benefit? I know my urologist sometimes asks if a prospective patient can call and speak with me. If your mom has been managing your medical care since your birth she may feel weird about your desire for independence.... it is probably hard for her to let go.
    Are you an adult, legally? Like over the age of majority? If so, why don't you find a surgeon in your area and ask him if you and your mom can come in for a consult?
    And no, after recovery the mitrofanoff doesn't hurt.
    I've had complications (bowel involuntaries (now resolved ) for years, a revision) and yet the mitrofanoff was by far the best thing I've done.
    Like you, my life was ruled by cathing until I got an indwelling but that wasn't a healthy option.
    Emily, C-8 sensory incomplete mom to a 8 year old and a preschooler. TEN! years post.

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