NEO/SUPRAPUBLIC

Melodie,

I want to thank you for your prayers and I pray also to make the right decision on my neo.

Since being in the hospital 2 weeks ago and having the doctors take out 3 years of mucus,(through the syringe after the water bladder test), I am sleeping now almost 3 hours and trying to "train" during the day for longer than 2 hours. I am flushing out the bladder once or twice a week, but all is clear.

It is amazing how our bodies adjust to what we must do, and after a time it becomes second nature.

This site has been a valuable tool for me since my bladder cancer in 2007, I also had lung cancer.

I have been cancer free with the lungs 5 years and the bladder 3 years.

Thanking you again for caring!
Silk

Silk,

Good luck to you! I sense you really want to hold on to that neo, and I can't say I blame you. An RC is a tough surgery and who wants to return for another major surgery. I think Holly must have done everything humanly possible to keep her neo and struggled for months and months. She has the patience of Job (I think) and is the bravest cancer warrior I know. She has had to fight several cancers during her life and she is still young. Anyway, she finally decided to try to convert the neo over to a Indy puch but the doc wasn't able once he got in there and so she ended up with the illeal and sounds like she is much improved. She is a really nice gal who will easily share info. with you if you contact her in a PM.

I hear those individuals who don't want the inconvenience of a bag as it was the primary reason I chose the Indy. But in talking with the few I know who have the bag, they do very well and their recovery time is far better. It doesn't seem to slow them down any...bowling, running marathons, working 40+ hours a week at jobs.

BTW, my doctor who was head urologist of UW Medical in Seattle had refused to do a neo for me even if I had wanted one. He said, "I know a lot of doctors disagree with me but there is just far too much incontinence related to the neo for women and it doesn't offer them a good quality of life."

Anyway, I'll keep you in my prayers that you reach a solution that will offer you more comfort and sleep. P.S. If you click on my signature you can go to my website and learn more about my experience with the Indy if you are interested. Hugs,

Yikes........900cc's..yep you've got a floppy bladder. In the beginning i would irrigate every time i cathed with 30cc's of sterile saline solution. There was so much mucus in the beginning i had to thin it out so it would come out. Over a 6 month period i found i only would irrigate maybe twice a week and now at 8 yrs out i never use it as its not a problem.
The neo is a tricky one. It was a very difficult decision for me to make and i went back and forth quite a bit wanting to be in the 33% that seemingly do not have a problem but i felt with my luck that wasn't realistic.
pat

Pat, thank you so very much for your valuable information.

You are so very correct in that women, I believe most, should not have the neo. I just had cat scan and sonograms done last week, but never had a ultrasound. The doctor did do a test, not sure of the name, and they put water into your bladder, I had so very much pain, he had to stop. The doctor told me he had not put in a lot of water, when he stopped he used a syringe and got over 900cc of urine out of the bladder.

The doctor(s) think I had a back of mucus and I need to "flush" every few days, the reason I had a lot of pressure and also having to cath often. Today I did go 3 hours before cathing.

I have an appointment April 1st, and have my list of questions. It seems after some research, and of course this helpfull site and the caring people on this site, my problem could be so much worse.

Thanking you so very much again and I will go to the site you also suggested.
Silk

well here is one study which certainly seems to suggest the neo is not perfect
informahealthcare.com/doi/abs/10.3109/00365591003727577?journalCode=uro
They can do a voiding cath at the hospital and then ultrasound any residual urine left in the pouch. The test i had was for the Indiana so probably was different and was done prior to my supra pubic coming out.
When you look at the incredible volume of females who seem to have leakage with their own natural bladders as time goes by...there are so many surgeries for slings and half the time they don't work either.....so why they do neo's on women i don't know...we have no support...we have a very short urethra......its just what they sell. If the uro's had to have one i bet they'd find a solution.
What does Soloway say? Or does he just cut and disappear? Most of them do. Can it be revised so its not floppy anymore? I know my surgeon has re-done neo's that have become floppy but he's in LA at USC/Norris.
Sure wish i could be more help...and i wish the uro's would quit hard selling neo's to females. One doctor at Indiana U..Dr. Koch seems to have really good success with females and neos but i think he knows a secret about the detrusor muscle that others do not take the time to do.
pat

Hi Pat,

I am in Miami. Dr. Soloway did the neo and is to be one of the best.

You mentioned tests, do you know what kind?

I do not do Kekels,I did 3 years ago when the neo was new, but because I do not have any female organs the neo "flopped", so reason for cathing.

From what I have read, most, if not all have some kind of problems with the neo, is this true???

Thanking you in advance for your advise.
Silk