Neuropathy following Robotic Prostatectomy

@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

@jchandler64
I’m not sure if you are taking calcium but if you are, you may want to stop for a few days. It makes your stool very hard, which makes it very difficult to poop. You end up with the situation you’re talking about where you can only go a little.

I had this problem after having my AUS installed. They told me not to Strain because of the stitches in my perineum and I was Really having a problem. I stopped calcium And then used a bisacodyl suppository. They’re supposed to be effective in 15 minutes to an hour, Fat chance. Six hours later, I’m going to take a piss and realize that I gotta do a lot more than that, It was like an explosion two or three days all at once. Complete relief. Since then, my calcium elimination has resolved the problem, Though I am still taking one Senna and one colace twice a day.

I do have to go back on calcium In a few weeks when I’m completely healed, but I will reduce the amount I’m taking.

@jeffmarc I consume zero calcium. My issue started on the front side. Got really really bad. Then this pudendal thing started. When they were both at their peak I thought I couldn’t take it any longer. Started drinking. Heavily to medicate myself at night when it was at its worst. That’s on top of a lot of Gabapentin and Duloxetine.
I don’t do that anymore. I still take the meds. No one. I mean no one here in my area, Central Florida, has ever heard of these issues or ever treated anyone with my complications. The Mayo considers it very rare. I consider that my surgeon messed up. On the table for over four hours for a RARP? My penis used to be 2.5-3 inches soft. Now I make the statue of David look like a porn star! No joke. TMI? Maybe. But it might trigger someone reading this to reply, I WENT THRU THE SAME THING!

@jchandler64 I know you’ve been thru a lot, but the ganglia might do the trick - I believe it’s further UP the chain and may be irritated.
At least you’ll KNOW the score on nerve blocks.
Also, did Mayo have access to your surgeon’s surgical notes? There is a lot of info in there that might be useful in helping them pinpoint ( sorry) the issue.
I really know what you are going thru - but I had zero pain, at least.
Phil

@jchandler64 I know you’ve been thru a lot, but the ganglia might do the trick - I believe it’s further UP the chain and may be irritated.
At least you’ll KNOW the score on nerve blocks.
Also, did Mayo have access to your surgeon’s surgical notes? There is a lot of info in there that might be useful in helping them pinpoint ( sorry) the issue.
I really know what you are going thru - but I had zero pain, at least.
Phil

@heavyphil Thanks for the reply. Yeah, I don’t know why they didn’t just start with the ganglia. The side effects of the first two were mainly the elephant legs and some leakage. They have everything. Over 400 pages of notes were delivered plus all of my images. So far I have only seen a pain mgmt doctor. My pcp thought that was the best way to get in their system. We tried Moffit but they wouldn’t see me. They said it was because they didn’t perform the surgery🤔 I am seeing one of their Surgical Urologist on Monday. Who knows what he will order.
This has been a nightmare. With the frontal pain, the perineum pain, the constipation… And as you know, there comes the anxiety and depression. It’s something I think and feel 24/7.

Thanks,

@heavyphil BTW, BOTH of your meds - especially Duloxetene cause constipation/IBS.
I know they are for your mental state because of all this, but talk to your doc about getting OFF these, or weaning down to offset the SE’s…
Gabapentin is used for anything and everything in the medical field - kinda like Windex in my Big Fat Greek Wedding; probably doesn’t do much of anything from what I’ve seen.
Phil

@heavyphil Neither are for my mental state. They are for the neuropathy. I just started taking half of the of one and two thirds of the other.

I had this and the good news is it will pass. I have some possibly helpful info for you. I sent you a private response to tell most of my story in a nutshell, however if you did not receive it please let me know . Phone service is spotty where I am. Thanks