Need advice about Mitrofanoff surgery!

Amy - posted on 02/13/2010 ( 3 moms have responded )

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Our 12 year old daughter had surgery two years ago to de-tether her spinal cord. She was left with a neurogenic bladder and bowel. She performs clean intermittent catherization several times a day, and it is painful for her. Her doctor has referred us to a Complex Surgery team in the Urology division of their children's hospital to discuss the option of creating a continent catherizable stoma at her navel using the Mitrofanoff technique. They gave us a brief article on the procedure, but we still have so many questions! They are also considering doing a cecostomy to assist with her immobile bowel. Does anyone have experience with this type of procedure, or know anyone who has had it done?

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Lynn - posted on 02/13/2010

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Hi Amy, our 5 year old daughter was born with a cloacal malformation. She had a mitrofanoff put in last summer....she also has a neurogenic bladder. She had a cecostomy(malone) put in as well. I would be more than happy to talk to you about it. Our email is ltjaver@verizon.net We take our daughter to Cincinnati Childrens Hospital. Take care! Lynn

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Amy - posted on 02/16/2010

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Missy, I hope your son is doing well after his surgery. Thank you for replying. Is the cecostomey the only procedure he had to get? We found the Pull-Thru Network site, but since we aren't members, we were unable to access some of the information. We are fairly certain our daughter will have to get the procedures done, but wish there were better options. She thinks it might be best since it is supposed to be less painful. We meet with the surgery team on Friday.

Amy - posted on 02/16/2010

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Lynn,
Thank you for your help. I appreciate your e-mail and phone conversation! I feel so much better going to her appointments this week now! Thank you for your kindness!

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