Welcome here!

I have not had the surgery, but I can send you some information and resources to help you find the right answer for you.


I am an information specialist at the PRC and have a spinal cord injury at C4-6. I can send you some information on physiatrists.It is a physical medicine specialty. You can go to their website (included in our fact shet) and find one in your area.


I can also send you some information and resources on bladder management; you can use this as a basis for discussion with your doctor.


Please let me know if you would like to receive thtis information.  My phone number is (800) 539-7309 x7202. My email is dlowich@christopherreeve.org
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I look forward to hearing from you!

Sincerely,

Donna 

Thank you, that`s ok . My parents will handle it . 

I've had bladder augmentation and the mitrofanoff done.  I wish I had them done sooner.  From what I've read though, if you want to have children...you do not want to have the mitrafanoff done yet, if at all. I would imagine after having children it would be an option.  I was reading a post where one woman found that out after she had the surgery and was very dissapointed.

For me, prior to having the mitrofanoff done, I had to transfer to bed in order to cath, and I would go as long as possible between cathing to do so...not healthy.  It also limited my ability to go back to work full time which I am doing now.

I am still on vesicare but it's great to be able to cath whenever and pretty much wherever if necessary.  I live near Kansas City, but I went to Craig Hospital in Englewood, CO to have my surgery.

I hope this information was helpful...and best wishes!

 I had the  bladder augmentation surgery 17 years ago performed by Dr. Shlomo Raz, at UCLA urology department. At the time I  really had no other choice but to do it because  I had taken so many  antibiotics that I was immune  to them. I was sick with infections all the time affecting my ability to work.

The surgery changed my life completely. It gave me the freedom from the ball and chain that used to be the indwelling catheter,  the leg bag and the night drainage bag.    I gained so much independence by not being tethered to a caregiver every 3 to 6 hours to  help me empty the bag.   Getting rid of those items made it easier to transfer, dress, and feel better about myself.

In light of my success and happiness with having done the surgery, I need to make everyone aware that you must be healthy and honest with your surgeon. I recommended this surgery  to another quadriplegic who was desperate for a solution to change her life. What she did not tell the surgeon was that she was treating herself by going to multiple doctors and pharmacies for antibiotics and pain meds. During her surgery, she died because her heart just wasn't strong enough to handle the surgery.

I am a C5–6 quadriplegic with limited hand function, however, I have no issues with inserting the catheter and empty the bladder.

Here is a video from a bladder augmentation patient, a 22-year-old woman that discusses her surgery from UCLA by a  Dr. that I'm assuming is a student of Dr. Raz'.  

Here is an articles about this surgery from New Mobility Magazine:

What About Bladder Augmentation Surgery?
By Bob Vogel

I'm a t2, my right arm isn't all the way straight yet . I'm not able to cath myself  .