Neuropathy following Robotic Prostatectomy

@bfg1 Will do. Thanks and you as well!

I've got it in my feet and vitamin B-complex and Taurine seemed to help. Went to the doctors and he looked annoyed when I told him what seemed to help. He offered no help.
Whenever it flares up, out comes the vitamin B complex and Taurine and it pretty much stops it. Maybe give it a try for a couple of days and see if things change. Hope things get better for you.
Dave

@bonanzaman Thank you. I’ve tried both with no luck. The only thing that seems to consistently help is an old fashioned hot water bottle.

The same thing happen to me but worse .got hemorrhoids real bad never had thrn on 50 years also couldnt control myself .its been really bad for 7 and they telling me nothing is wrong bullshit .

I’m 66 now 13 month ago a had also a robotic prostatectomy still dealing with constant pain in my bladder and pelvic, I believe is some type of nerve damage, I have gone to a couple of urologist, none have been able to determine exactly what’s causing the pain, taking medication for overactive bladder , not much help , so I’m in the same situation, not easy to go with my everyday routine, good luck and let’s keep searching

@juliop60
It sounds like your surgeon has really not done you Any favors. I’ve heard from a lot of people that have had prostatectomies in the last five years And there are almost never issues like you are having. , I had mine 16 years ago And had almost nothing going wrong. Went to work part time after four days and full time after 7 days.

Do you know how many prostate surgeries your surgeon had done before doing yours? I wonder if they were very experienced.

Have you tried different painkillers? For constant pain, you do need something like low-dose oxycodone, Though I imagine you’ve already tried Tylenol, Aspirin and ibuprofen. Was anything able to give you relief for any amount of time?

You need to pursue a second and even a third opinion from very experienced urologist. Do you know if you’ve been going to a center of excellence to try to get to the best doctors? If you mention where you live, I can probably give you a place to go, Maybe even a couple places, To find doctors that know how to treat conditions like you have. You need an expert treating you not a run-of-the-mill urologist. Hopefully, you can find one.

Thank you for reading my post, my urologist is in Cleveland Clinic in Weston Florida dr Olek Shivastava, has done many robotic surgery, also went for a second opinion to a very well known urologist dr Sanjay Razan wasn’t any help just talk bad about every other drs but couldn’t help me at all, did other test and said deal with it , not interested in helping since I didn’t do surgery with him.

@juliop60
If you live near Weston then Miami is not too far away. Here is a place to go in Miami. The place you are going is not considered a center of excellence.

Sylvester Comprehensive Cancer Center
University of Miami
Miller School of
Medicine
Miami, Florida
Clinical Cancer Center

There are other places in Jacksonville, Tampa, and Gainesville. I can give you information on them if you prefer another place.

@jchandler64 I had a situation similar to yours, but on the other end. After my surgery I was completely unable to move my bowels; NOT constipation!
The urge to go was normal - even powerful at times; yet there was a complete disconnect to my rectum and the ‘follow thru’ of relaxing the sphincter and allowing evacuation…Yes, TMI for sure, but NOBODY ever heard of this - not the surgeon, not the GP, and not the GI doc who did a colonoscopy and said ‘ all good’.
SIX YEARS of that, living on laxatives with everyone thinking I had a screw loose; read every f***ing thing I could find with no success…
Finally - FINALLY! - found an IBS website when doing research for diet due to upcoming SRT.
Found the magical word ‘anismus’ - the inability to have a bowel movement caused by (wait for it!)…
TRAUMA OR PREVIOUS PELVIC SURGERY.
Hmmmm - think a RARP might fall anywhere in this category?? YET, no one EVER heard of such a thing!
Believe it or not, 25 rounds of SRT has restored my bowel function to what it was before surgery. Almost an absurd outcome, right?
That’s even more f***ed up than the surgical result! Not gonna question it, just extremely grateful for that silver lining of recurrent PCa.
Can’t recommend radiation for your problem, but just know that you DEFINITELY have nerve damage (unintended I am sure) and you need to find an excellent neurologist who can pinpoint where in the neuronal chain this trauma occurred. It may be treated with injections to ablate that misfiring nerve or perhaps a TENS unit to interfere with the signaling mechanism.
Best of luck to you!
Phil

@heavyphil Thank you very much for the info into your journey with RARP. So far I’ve had two nerve block procedures. Dorsal Penile and Bilateral Pudendal. Very little relief. They, The Mayo, want to do a third. Ganglion Impar. I’m not sure I wanna have another one. Side effects are not terrible but I’m just not convinced it’s gonna make a difference. I would give anything to have a normal bowel movement. I go to the throne no less than 10 times a day. No relief. Just bits. I have another appointment on Monday with one of their Surgical Urologist. I parted ways with mine. We drive four hours each way. We’ll see. I will say this, I’m 100 times better than a year ago. But, I tell my closest buddies, you would think you are dying with just the pain and discomfort I’m experiencing right now. I was suicidal a year ago. Would never do it but when you’re laying there at night, when the pain is at its worst, you have thoughts. How much longer can I put up with this. At my last procedure I was asking a lot of questions. Their answer was almost always, “we don’t know. This is a very rare complication. RARE.
Thank you for the message and i apologize for the lengthy reply. God Bless!

Joe