OCTOBER 2024 UPDATE - RECOVERY FROM STEM CELLS - Loss sensation penile glans overnight (Pudendal/Dorsal nerve related)

[Violet M]

Hi John, I’m not a doctor and never claimed to be.

What do you suggest someone with numbness do? What’s wrong with brainstorming options? Are you suggesting people go straight to surgery or do nothing? How about some positive ideas without all the negativity?

An MRI is typically a good place to start too if you haven’t already had one. And BTW, I got an awful lot of bad advice from doctors who didn’t know anything about PN. None of us are God but we can at least help each other brainstorm options.

Violet

[aussie_pain]

Well if you have any basic knowledge of peripheral nerves, Numbness is a sign of sensory axons dying.
It's like saying to someone with severe carpal tunnel who has lost feeling, hey just see a physio see what they can do.
If I was having bad numbness I would be seeing a surgeon asap, I would treat it like any other nerve compression.
You are not helping people, you are misleading them, it's not good. That's why I am stating on here, stay off this stupid forum and see a pudendal specialist who treats this. You guys will forever be asking people like this violet person for advice and she will have more than enough time to throw her answers at you.
Take care everyone

[April]

John,

Your comments to Violet are obscenely awful. Violet recovered long ago and has devoted her time and money since then to create and maintain this site and help others who were still struggling with this awful problem. I feel profoundly grateful to her for her exceptionally helpful advice and for all the wonderful educational materials that she has put together on this site. I used her input and the information on this site to, in essence, diagnose myself and navigate through a mess of ill-informed doctors. We are all tremendously lucky to have her helpful advice and this wonderful site.

April

[aussie_pain]

April
I am not being awful to Violet.
Sometimes the truth just hurts.
I myself am receiving from this to, bilateral. Once in a blue moon I would check this forum and noticed how on this post someone was complaining of numbness and she told them to see a physio, it's just mind boggling how someone could suggest something so silly like they. The physio would be milking him dry when it's been confirmed that he did have nerve compression! People need to stop suggesting stuff on here, people like I myself at one point become so desperate so this gentleman could of went down the wrong route of physical therapy and been milked when indeed he needed surgery. Another reason why people like Violet need to stop suggesting.
The truth hurts April, it really does.
Take care everyone, please try stay off this forum, it's horrible for mental health. It sent me off the edge at one point,
John

[Violet M]

John, I agree, of course everyone with numbness or neuralgia should see a doctor. That's why, in the post I made to Staypositive I also mentioned seeing someone who specializes in pelvic neuropathies, in addition to seeing a PT. We have posted all over our website -- to see a doctor. That's why we offer a list of providers, including surgeons like Dr. Aszmann, who treat people with pudendal neuropathy. I'm glad Staypositive found Dr. Aszmann and is doing great now. I appreciate the fact that he came back to the forum to post his success story. Hopefully it will help other people.

Numbness is not always a sign of axons dying or that you have to have surgery. It can be a sign of neuropraxia. https://www.mayoclinichealthsystem.org/ ... ous-system
It's important to explore all of your options. There are some musculoskeletal conditions that can cause nerve impingement and numbness. I've been treated through PT for several conditions that caused numbness.

I'm sorry the forum caused you to go off the edge at one point. How are you doing these days?
My experience was that the forum helped me find information when there wasn't much out there, and my surgeon didn't have a clue what to do. My PT figured out the diagnosis and that lead me to a PNE forum. It was through the forum that I found Dr. Bautrant, and he saved my life. All of the people who help out on this website/forum have one goal -- to help people get better. Are we perfect? No, of course not. Thank you for pointing that out.

Violet

[jaxi123]

Aussie please tell us what helped you.

[Tuchka204]

I contacted Dr Aszmann, excellent plastic surgeon specialising anything nerve related. I've just regained sensation in the glans pretty much a day after microsurgery so far. It still feels funny down there but I have sensation and I guess the nerves need a bit of time to heal properly.
After emailing him he took a few days or a week to email me back indicating that this is most likely my problem dorsal penile nerve compression, I told him that I suspected dorsal nerve compression as in my case for 2 months I had no glans sensation and this is pretty much the only explanation (and I have no spine issues, diabetes no testosterone issues). He scheduled a webex call 2-3 weeks and a consultation fee of EUR500 after replying to my email. During the email reply I asked how soon could I have surgery as I was 100% sure this was my problem (its very specific just ED and no sensation in the tip of the penis the glans) and he was able to schedule me for surgery a month after our webex call.
Surgery was quick 90 mins, full anestesia, not really too invasive, not painful in my case. Nurses asked me if I needed painkillers after surgery and the pain was very bearable like 2/10. I was able to walk the next day around the hospital and released that next day at night, and was in Vienna post surgery for a few days as per his recommendation (not that it is needed just as a precaution being in the country to make sure I'm fine - unlikely there would be any complication but let's say there was it would be inconvenient and a big hassle to return back from my home country and get checked by him) so I was chilling in my hotel and I was walking around slowly and fine around the streets.

how do you feel now?
Was the operation one-sided?

[aussie_pain]

April by the way
I have actually read some of your comments on this forum and it's made me laugh loud.
You have said to people that you are at the age where colonoscopy are a regular check up so I'm assuming you are at least over 50 years old. You have also mentioned in a comment that you are out of shape
How on earth can you give advice to the people that are half your age and in shape with this? Get real. Old women piss me off so bad

[benraycamp0]

Aussie - out of curiosity, what’s your story? Have you improved?

[Violet M]

Hey Aussie,

I promise you April is a very nice person. She's done a lot to help with the forum and website and is currently helping to get the Canadian doctors and PT's updated on the website, which I appreciate very much.

I guess we're all going to get old someday, right? So, it makes sense to be nice to each other in the meantime. Can you please stick to the topic in this thread and stop making personal attacks?

Violet