recent surgery

[Pleasehelpmegod]

Can you tell me what procedure you did to diagnose your pne? Was is 3t MRI? Mr neurography?

[April]

I was diagnosed with pn in the summer of 2015 based on my symptoms (my burning pain followed the path of the perineal branch) and history (my pain started a few months after I started an intense workout routine on a step machine). I had two MRIs: one in 2016 (at Hibner's hospital), which did not show anything unusual, and one in the summer of 2018, which was a 3T MRI following the Potter protocol (done locally). That one showed left-side only edema between the SS and ST ligaments, and that matched the location of my stabbing pain. My symptoms had continued to get much worse, so putting it all together, Hibner (and Conway) thought it made sense to do decompression surgery on the left. So, I guess the recommendation to do surgery is a pne diagnosis, but I don't think surgeons ever know for sure that the nerve is compressed until they get in there. And I don't think MRIs are usually very useful diagnostically. In my case, my symptoms and history suggested pne, and the 2018 MRI just added to the picture, or strengthened that interpretation.

April

[harry_nerve]

Deleted

[April]

Hi Harry,

The surgeons didn't mention in their report or to me that they saw edema when they did the surgery. I'm not sure if that is something they could perceive (but I don't know). But, Hibner did describe the nerve as changing from being flat---like a flattened hose---to rounded when he got it out the ligament. And the surgeons did say that it was embedded in the SS ligament (the small one that they detach from the spine during the procedure).

April

[harry_nerve]

Deleted

[jaxi123]

Who did your surgery and are you pain free? Can you sit pain free? I had surgery with Hibner in 2008 and it was a big mistake and the nerve is re-entrapped with scar tissue. he dropped me as a patient and I have been suffering for over 20 years.

[harry_nerve]

Deleted

[jaxi123]

Yes

[April]

Hi Harry and Jaxi,

I am not pain free. I do still have pain, but it is much lower and less frequent than it was before the surgery, so I manage okay. Now I have inexplicable upticks in pain (every couple of weeks) and a touch of ptsd to go with them. I can usually manage it with a very hot heating pad. Hibner did the surgery, and he used the TG procedure. For me the recovery was not bad. I can sit, but I have always been able to sit. Hibner thought that for me sitting might have opened up more space in my small pelvis (something he and his former PT thought may happen with some people with a small pelvis).

So very sorry about your ongoing pain, Jaxi.

April

[Balenul]

Hi Harry and Jaxi,

I am not pain free. I do still have pain, but it is much lower and less frequent than it was before the surgery, so I manage okay. Now I have inexplicable upticks in pain (every couple of weeks) and a touch of ptsd to go with them. I can usually manage it with a very hot heating pad. Hibner did the surgery, and he used the TG procedure. For me the recovery was not bad. I can sit, but I have always been able to sit. Hibner thought that for me sitting might have opened up more space in my small pelvis (something he and his former PT thought may happen with some people with a small pelvis).

So very sorry about your ongoing pain, Jaxi.

April

I know you had big urinary symptoms also not only pain.Did the diagnostic blocks helped you regarding pain / urinary symptoms ? They don t help me....Hibner consider surgery but not sure what to do...Gabapentin made me almost normal 10 months but stopped working and my urethral urinary symptoms are ruining me.....All other pill do zero latly