Augmentation and mitrofanoff

[Juel1]

Hi

My daughter is waiting for augmentation and mitrofanoff surgery, Has anyone experienced this surgery.

[Charlie5angel]

Hi there!

My daughter has a supra pubic catheter, possibly looking at bladder neck surgery, I really wish I could help with your question, the mitronoff was mentioned to us a couple of years ago, she's had couple of Botox in the bladder, she has a uterecole (probably spelt wrong) which has resulted in duplex kidney on one side with a double uretha on that side which we were totally unaware of until she had to have a scan at 8 years old due to emptying problems, it was a shock to us, she had upper pole hemi nephrectomy 6 years ago but still having problems emptying, she's had the pubic catheter now for two years, it was only supposed to be temporary, it's caused so much anxiety and its affected her life both mentally and physically , I would be really interested to hear from you as we don't know anybody else her age going through anything like this, she's just starting to get her head round this mickey-button catheter but her consultant is possibly looking to try and sort it once and for all but that would involve more surgery and she's so scared of it all, how has your daughter coped with the whole process and yourself, it's really hard on ya parents seeing them go through something so difficult.

please keep me posted, sending best wishes to you and your daughter xx

[Juel1 in reply to Charlie5angel]

Thank you so much for your reply and sharing your daughters history , I’m really sorry to hear of the effects it’s had on her.

My daughter is coming up to 13 now and children ( teenagers) are becoming more cruel, she is very frustrated that she is trying everything to keep herself dry but nothing seems to work

Similar to yourselves at 8 years old she was referred to a children’s hospital where they carried out tests and scans, that’s when we found she had a VUR and a small dysplastic kidney 28% function on her right, she had two Deflux procedures to help this then started on Self catheterisation 3 hourly, still wet they referred her to Great Ormond st hospital where they have given her Botox four times the first couple of times it helped a little but not as much as we hoped but the last time in March has had little effect, we have tried lyrinel 10mg along side but hasn’t made a difference, she has also came of her prophalactic anti biotic due to still getting UTIs growing pseadamonis

We went to hospital this Monday and they have booked her in for Augmentation Mitroffanof and bladder neck surgery as an end stage after exhausting everything

She wants to have it done to stop her from being wet, although she is really scared of the operation. We haven’t had a date yet, but have been told before the end of this year.

I’m feeling worse than her about it. It is a choice and decision I wish I didn’t have to make. There are a lot more questions and information I need. I worry is she old enough to make this decision, can things change I know deep down they won’t but I’m sure.I know things are starting to effect her mentally

Love and best wishes to you and your daughter, I will keep you posted x