Surgery and misdiagnosis

[zazzaleon]

Dears ,

I have seen different doctors and received different feedback .

One doctor told me that i might have pudendal nerve entrapment , in case this is not the case but i go for surgery what will it happen ?

Will the doctor understand during the surgery that might nerve is not entrapped ? what it will be the risk ?

Thank you

[jaxi123]

I would suggest you do tons of research before letting any dr butcher you up. This is such a rare condition you must educate yourself.

[April]

Hi Zazzaleon,

So you asking if (1) the surgeon will be able to determine if the nerve is entrapped when in surgery and (2) what the risks of surgery are? I would ask your surgeon both of those questions. Here is my best guess at each: I think the answer to both depends on the type of surgery. I had a transgluteal surgery, which, as I understand it, gives the surgeon clearest picture of the nerve, and my surgical record suggested my nerve was entrapped. It said: "The left pudendal nerve seemed to be significantly flattened between the sacrotuberous and the sacral spinous ligament and also densely attached to the left sacral spinous ligament." But I'm not sure the surgeons are always able to determine that (especially if they are not a transgluteal surgery). The pudendal nerve runs between the ST and TT ligament in everyone, so I suppose it could, in some cases, be difficult to definitively determine if it is situated between those ligaments in a way that is creating your pain. The risks of the surgery depend on the type of surgery. The transgluteal probably has the longest recovery time. Although my recovery was fairly easy, I did have to take several weeks off work and rest. And, of course, the surgery itself presents a risk. I don't have any side effects that I think are due to the surgery (e.g., problems with my ligaments). But, some people have gotten worse after surgery so that is a possibility.

April

[Violet M]

Hi Zazzaleon,

Unfortunately, the doctors can't always tell with 100% certainty if you are entrapped before doing surgery. The Nantes team published an article that gives the criteria that tells if you are likely entrapped. https://www.pudendalhope.info/wp-conten ... iteria.pdf
But even those criteria are not 100% proof that you are entrapped.

My personal criteria for deciding on whether to have surgery was #1 did I try non-invasive therapies first and they weren't helping, and #2 was my quality of life already so bad that I was willing to take the possible risk of getting worse from surgery. Also, my history, symptoms, and clinical exam all pointed towards an entrapment. I had short term relief from a nerve block. I had tenderness at the ischial spine on palpation by a physical therapist and by two physicians. Internal PT made me worse because it irritated the nerve and gave me a flare-up for a week. I had a history of heavy exercise just before the pain started. Everything was pointing toward an entrapment. The Nantes team article wasn't published yet when I went for surgery. The one criteria I did not meet from that article was that the pain did wake me up at night and I had a lot of trouble sleeping before surgery.

I know it is a very difficult decision to make. I wish you the best in your decision.

Violet

[Staypositive]

Dears ,

I have seen different doctors and received different feedback .

One doctor told me that i might have pudendal nerve entrapment , in case this is not the case but i go for surgery what will it happen ?

Will the doctor understand during the surgery that might nerve is not entrapped ? what it will be the risk ?

Thank you

My symptom was no feeling in the glans (therefore ED).
The only logical explanation was dorsal nerve entrapment and I went crazy and did a lot of research and went to so many doctors all of which were of no help at all since this is a super rare thing.
I did MRIs, blood tests, testosterone test, etc and I was fine everywhere.
So nerve entrapment was the only logical and most likely cause because it so so specific (no feelings in the glans) and the glans is connected to the dorsal penile nerves - FULL STOP.
Without further tests really because an MRI or Xray is not really gonna show nerve entrapment, I just went ahead with the surgery and both nerves / sides were found to be compressed / entrapped.
Its been 1.5 months and I can't say my case is a success nor failure. I have erections back, but I don't really have sensation back in the glans (so this is very odd) with touch feeling is minor like 5-10% very low and with temperature I can't feel a thing.
Before the surgery I have to disclose that I did do a stem cell treatment (Mesenchymal stem cells (MSCs)) thinking there is no harm they are injecting my own stem cells back into my body and they have proven to have healing capabilities.
After 2 months of 90-95% ED its like my penis just did not work for sexual function at all.
After those 2 months a had the stem cell therapy and within within 2 weeks of the stem cell therapy my erections starting to come back but no sensation in the glans (erections came back not with the same ease as before but since then they are back).
I had my surgery the 3rd month -1 month after the stem cell therapy.
RE Risk of doing the surgery I thought to myself this is a very stressful situation and worse case if they are not entrapped, they have cut me open and I have some scars but if I can heal its really worth the risk - the scars and pain completely goes away within 15-20 days and you can pretty much do back to doing anything within a month. The pain was very bearable for me.
So my case was just dorsal nerve entrapment - specific part of the pudendal nerve.
I did experience pain or unpleasant/weird and electric shock sensations for the first 3-4 weeks and I was told this would happen and that it was a sign of nerves healing. I was told tingling sensation could happen too but that did not occur with me. And now for the past 2 weeks there's no more pain, electric shocks, weird feelings, etc.
I also don't really remember exactly how it felt before down there as you take things for granted. Perhaps the fact that I'm circumcised since I was a teenager doesn't help, as thing reduces sensitivity down there in the glans.
Right now I'm just leaving it alone and hoping with more time to see improvements (fingers crossed).
Hard to find or read about success stories with lots of details in this forum I think.

[zazzaleon]

thanks for you answer .

what type of decompression surgery you went through ?

Who was the Dr to perform it ?