Neuropathy following Robotic Prostatectomy

DO NOT GIVE up in trying to find help ! I had lingual nerve damage and also - "nobody heard of it"- bozos !!!! I am sorry but some doctors ARE ! If a doctor "never heard of it" he/she should go back to medical library and look for the answer and it will be found. Nothing makes me more angry that doctor dismissing somebody's pain - WT* ???? I had to go through ton of medical papers and by reading them found the name of a doctor in Canada who specialized in "burning mouth syndrome" and payed for consultations via phone. To make the story short after that I found an oral pathologist in my area that had PhD at UCSF and who helped me immediately ! Pain was gone in 2 weeks with prescribed medication. She not only "heard of it" but was in disbelief that I had to see so many doctors (inclooding a Stanford one) that were clueless.

Yes, you need to find good neurologist. Find one that was involved in research , not only lazily holding some small practice and is in his 80-ies. If you have university hospital near by, look into that. There are many painful disorders in genitourinary tract that are nerve related , both among women and men ! THERE IS help for those condition via medication, bio-feedback , etc , just find a good doctor that treats patients with those conditions 👍.

Wishing you the best of luck 💗

@surftohealth88 Thank you. It is extremely frustrating. Finding info online has not been great. I’m hoping someone will read my post and perhaps know of someone that went through the same or knows of a doctor that can possibly help. Thanks again,

@jchandler64
Neurological Causes
Pudendal Nerve Irritation/Entrapment:
The pudendal nerve and its branch, the dorsal nerve of the penis, are responsible for the glans's sensitivity. Irritation, compression, or entrapment of this nerve can lead to neuropathic pain, numbness, tingling, or burning in the penis, often at the tip.
Pelvic Floor Dysfunction:
Hyperactive or tight pelvic floor muscles, such as the bulbospongiosus, can cause pain to radiate into the penis by compressing the pudendal nerve.

Genito-Pelvic Dysesthesia (GPD):
This involves abnormal sensations in the glans, which can include pain, itching, buzzing, or throbbing, and may be linked to certain medications or psychological factors.
Other Potential Causes
Infections:

Balanitis (foreskin and glans infection), urethritis (urethra inflammation), or sexually transmitted infections (STIs) can cause pain.
Peyronie's Disease:
This condition involves fibrous scar tissue forming inside the penis, leading to pain and curvature.

Injury:

Direct trauma to the pelvic area can cause nerve irritation or muscle damage.

Other conditions:

Less common causes can include penile cancer, priapism (prolonged erection), or issues with the urinary tract.

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This is what short googling found - I would suggest that you go to a neurologist for consultations. As you can see there are several different neurological causes of pain in that area.
Wishing you the best of luck.

Hey bud, Definitely neuropathy, but good luck finding an answer!
After my RARP, also at age 64, I lost my ability to have a normal BM. NOT constipation, but a disconnect between the urgency felt for needing to defecate and the ability to do so.
The surgeon ‘never heard of such a thing’ and the GI doc said he found nothing unusual after my colonoscopy.
Well, what was he gonna see? A nerve with a sign on it saying ‘here I am’? I have searched, Googled, etc for 6 yrs and I finally did find a reference on an IBS website.
The condition is called ‘anismus’ - basically a pelvic nerve dysfunction usually called by trauma or PREVIOUS PELVIC SURGERY! Hmmm…do you think a RARP qualifies for this?? I sure do…
Anyway, no one is going to be able to pinpoint the exact problem unless you go to a neurologist who specializes in GU dysfunction. They can slap electrodes on you and see if they can mimic that sensation you are feeling.
Once they do, they can possibly isolate that nerve bundle and either ablate it or inject it with steroid. Not easy to do, however…biofeedback or electrostimulation can also help.
On the brighter side, traumatized nerves can always heal but they do it at a much slower rate than other tissues. This can always happen… Best of luck in your search!
Phil

@heavyphil Thank you, Phil. It’s nerve wracking for sure! Lol. I find it difficult to believe that no one in my orb has never dealt with this issue. And, they seem to not want to do any research. When I speak to my surgeon he just scratches his head. My radiology oncologist is the one that referred me to pain management. The pain management doctor scratched his head as well. His answer was Gabapentin three times a day. 600mg per dose. Then trazodone at night. 225mg.
I keep getting told it will eventually heal. I don’t take a lot of comfort in that. When I’m in bed, it’s always the worst at bedtime, I wonder how much longer I can take it.
Thank you for sharing!

Yeah Gabapentin…the snake oil of our time; anytime a malady can’t be addressed, that is the go to drug of choice.
Keep looking for an electro-physiologist or someone in that field. Drugs ate not the answer IMO as they treat the symptom, not the cause

@heavyphil

Yes, but they help you live a normal life TILL you heal. 😉

It was the case for me and I am eternally thankful for that ! I was spared 7 years of needless suffering - that was how long it took for my lingual nerve to regenerate and heal.

BTW, I was prescribed tiny dose of Klonopin (off label since it slows nerve impulses as anti- convulsive ) and had my life back. Gaba caused me having "out of body experience" and was out of question. Took one and that was it - never again lol. I never used drugs in my life, not even a "joint" but I imagine that is what people on "real" drugs feel 😰.

Hello Mr. Chandler. I had exactly the same experience as a result of RP in October of 2021 at age 65. The pain did not start until almost 2 months after surgery. I described it slightly differently to my first doc. « As if I suddenly had one of those metal spring paper clips( clamps) applied to the end of my penis »
It then over time changed some into burning pain when urinating and constant pain at the tip. No UTI’s and in fact the infectious disease doc ran every test possible and found nothing.
My surgeon also dismissed me several times. PCP thought maybe nerve damage and at his suggestion I started taking NAC supplements. I tried another urology department at a different hospital. Cystoscopy caused me to almost jump through the roof even with lidocaine! He reported mild stricture however I had good flow. I went all the way to Mayo Clinic from New England and they did another cystoscopy and the flow check. It was fine. They prescribed self catheterization for 10 weeks with clobetasol titrating down from 3 times / week to once /week. Thought it might be Lichen sclerosis. I had no reason to believe that based on everything I read because I’m not fat nor do I smoke. Eventually I got a new urologist at home who told me he thought it was definitely not Lichen sclerosis but probably due to nerve trauma from the surgery but had no treatment answers other than to finish the clobetasol treatments because it may help with the pain and I think it did reduce the pain eventually by about half. It could have just been time. Anyway it took 3 years before I felt reasonably okay again.
The NAC may have helped but again not sure. I still take it. Currently I am 4 years post RP and doing much better. I go for psa checks every 6 months. I occasionally have slight pain at urination but nothing like before. No redness or constant soreness either. Sorry no easy answers here except time and I had the same experience with doctors as you . No one really knew and no one heard of such a thing.
Brice

@bfg1 Thank you, Brice. Today I saw an oncologist that I really like. She is going to run the show moving forward. I’m being referred to a neurologist for further evaluation. Basically to confirm it is neuropathy. She’s going to run some elimination tests.
I like your use of the visual aid to describe the pain. I used an actual bulldog clip to help describe my pain. When asked to describe my pain I would turn to my wife and say, “can I please have my visual aid.” She would give me the medium sized clip. I would extend my index finger and attach the clip. They got the message.
Thanks again for your reply!

@jchandler64
Wishing you well and if you want to I would like to hear any significant updates you can report.
Brice