6 replies to this topic

[Kit]

Has anyone had one of these done? What were your experiences? How long was your hospital stay and recovery period? My friend is seriously thinking of having one but has had a lot of conflicting advice about the length of hospital stay/recovery times.

[Deej]

Hi,

This subject has been the source of previous threads - you should read:

http://www.apparelyz...?showtopic=3744

http://www.apparelyz...;hl=mitrofanoff

http://www.apparelyz...;hl=mitrofanoff

Its always useful to do a 'search' for info you want before posting a new thread !

Anyway hope the info in these threads is useful to you and your friend.

[EmHope]

Hi,

I am new to this web site and at the chatting experience, but I had to reply to this message because it seems like there is a lot of conflicting messages out there.

I am at C6 complete injury and am six years post now. I intermittently self catheterized for about three years. Then I did have the Mitrofanoff Procedure done at the University of Michigan Hospital. Actually my doctor, Dr. McGuire, invented the procedure. He tends to call it the Neo-urethra. After tons of appointments and consultations I decided to have it done. The biggest thing for me was that the second-leading cause of death in spinal cord patients is kidney failure due to infections and the lack of functioning of your bladder if you have a drainage bag attached. This is what made me very resistant to any type of leg bag, super-pubic, etc. My doctor was very adamant about not putting in an indwelling catheter... especially to someone so young.

This procedure was mostly due to the fact that I had hemorrhagic cystitis (bleeding in the bladder) a number of times, and due to my lack of hand function I could not get my pants up and down to self catheterized regularly. Also, my doctor was adamant about not having a drainage bag or indwelling catheter because if ever there was a cure some day down the road and people with SCI could regain function if your bladder is not working because there is a drainage bag preventing it from filing and on filling you may not be all to regain bladder function. With the Mitrofanoff Procedure your bladder still fills and empties similarly to if you had normal function.

I had the procedure done and when my doctor looked at my bladder and was deciding whether to use the appendix to make the tube to the abdomen, he decided not to use my appendix because my bladder tissue looked healthy. He just took a small piece of fasha (muscle tissue) and a small piece of the bladder it self to make the tube. This way there was no access need is in the way of the Stoma. He created the stoma just below my underwear line so that it would not be seen when I wear a bikini. It is such a small hole that I have to use a size 10 French catheter. I think normally people use the 14 French. So it is very tiny! The surgery only took a couple of hours, and then it was only in the hospital for three days. I went home with an indwelling catheter for one week to let the blood from the surgery drain so you don't get any blood clots. After that I could remove the indwelling catheter and begin intermittent catheterization. My bladder expands to hold a large amount of cc’s and then when I catheterize I do it with a size 10 French catheter right into the toilet. All I have to do is combine the top button of my jeans. Very convenient!

I did have some leaking problems in the beginning but now I just wear a tiny pad right over the stoma. I also get Botox injections every three months to reduce the spasticity in my bladder. This is not due to the procedure, but due to the spasticity I had in my bladder before.

I hope all this information helps and that you can make an educated decision about whether this procedure is for you. I am now fully independent during the day and night with my cathing. I just have a caregiver help me with my shower in the morning. I am the 22 year-old graduate student studying speech-language pathology with a very busy schedule and not a lot of time to deal with leaking or other bladder issues. This is truly given me more independence then I could have hoped for!

[Kit]

Thanks for sharing your experience EmHope
Deej- I had used the search function to find other threads discussing the Mitrofanoff Procedure and although they were useful, they have no responses from people who have actually had the surgery.
Any further personal experiences or literature relating specifically to adult females with SCI having the procedure would be greatly appreciated.

[wheels1975]

I had this procedure back 8 yrs ago. I was in the hospital for 6 days. A few of those days I was quite miserable mostly because they had a tube up my nose. I took a month off of work but I healed quickly. I am a C5-6 quad and following the operation I can self cath easily now when I'm sitting up, however it's difficult to do lying in bed at night. I have had zero UTI's since the procedure and I can wear shorts in the summer since I no longer use a leg bag and that really helps me when it's very hot outside. I was hesitant to do it, my dr. tried for about three years to convince me to do it, but I wanted feedback from someone who did have it done before I undertook it. I never did find anyone, but I went ahead anyways and I can say it was one of the best things I've ever done. I highly recommend others to condider this procedure.

[gassman]

I was scheduled to have the procedure this week but due to an infection and fever we decided to postpone it for three months or sooner if a surgery cancellation occurs. I have had a suprapubic catheter for one year and agree that is not a long term solution for various medical reasons. That being said there are plenty of folks with suprapubic catheters for decades that do fine.

I feel that the success of this procedure and performing intermittent caths is a safer and better solution for me.

In my case having performed intermittent caths for about ten years successfully I developed a fistula in my urethra and after allowing it to heal it was no surprise that the urethra scared and is permanently closed therefore either a suprapubic cath or mitrofanoff.

I have one question for those that have one. What do you do at night to remain continent? I had a system for me before which consisted of placing a condom catheter on with a leg bag incase I spilled which was about 50% of the time. I am not all that excited to dehydrate myself ever night or set the alarm clock to wake up and cath at four or five hours. Obviously we are all masters of adaptation by this point of our lives and do what is needed to move forward.

Lastly how about when you travel long distances on the plane?

Thanks

Robt.

[cdngrl]

I have one question for those that have one. What do you do at night to remain continent?

i have this question also. i was set to have this procedure and had to have another surgury first i'm still considering the mitrofanoff but i would like to speak about it more to the dr's or someone who has had the surgury first. i checked the link and couldn't get it to work.