neuropathy post-cystectomy

Hi rdd001,

I am Holly...Had RC and neobladder on 3/13/07. Noticed in your post you mention a damaged femoral nerve that makes it hard to walk. Your surgery was only 2 monthes before mine, and I too have great difficulty with one leg....There is tons of "pins & needles" feeling in the inner thigh and other sharp sensations at times. I can walk as long as the movements are slow and going forward. If I have to move fast or go to the side, pull the leg in - well it ain't pretty and is frustrating. I am starting physical therapy next Friday to try to help it. Have you tried anything that helps? I keep getting told nerve damage may start to heal itself after 6 months and that it is likely from the position I was in during the surgery. I am 42 and it would be nice if I could think about walking normal again
Good luck and Take care, Holly

Hi Vin,

This is my first post, but this forum has been a blessing for me. I had Radical Cystectomy with a Studer Neo Bladder replacement on 1/19/2007 . Since then I have never had to self cathererize. My Neo bladder took some getting used to but I feel for me it is working better than I expected. I have to get up every 3 hrs to empty it to keep from leaking ( sometimes I don't make it). I had to get up every 1.5 hrs before the surgery so this is a plus.
My surgeon did the nerve sparring (this was very important for me due to I am 48 yrs old )
I expect to return to work July 1, 2007 so it has me 5 + months to recover.

I had one complication as my Femeral nerve in my left leg was damaged by the surgery and it had been difficult to walk for quite some time.

I was very worried about what my sex life would be after the surgery.I thought it would be over. I am able to get an erection now. It is about 60% of what is was before my surgery. My Doc gave me some Cialas ( ed pills) and that made it about 90% I was surprised by the results . My wife was pleased also.

I understand your need to ask questions. I had about three pages I wrote down and ask my doctor he took the time and answered everyone of them. He has been outstanding, he even gave me his personal cell # and told me to call anytime I have any questions or problems. I called him several times especially after the surgery.

I plan to post my entire experience on this forum in the future. It has very supportive to me to read all the experiences that everyone has had.

The one thing I learned from this forum and other research is that having bladder cancer is not a death sentence. My Surgical pathogy was pT2a no mx ( stage II ) and negative margins.

I would be more than happy to discuss my experience with you. My doc gave me several neo bladder replacement patients to talk with prior to my surgery. It was a big help.

Good luck to you

Dave