Sacroiliac Joint and Maigne Syndrome

[Aleclucy11]

Hi there, I am wondering if you all can help guide me.... Long story short, diagnosed w/ pne Dr. Marvel 2010, after relentless pain in vestibule, left perineum, had MRN, long runs of pt, maybe 1 year or more, so then surgery w/ Marvel 2012, June, perineal branch dissection (this is the surgery the Austrian Doc. Performs I believe). Now I have been in pt, 2 times weekly since July, today we had new findings besides my usual sacral torsion, tight muscles everywhere. My therapist pressed into the levator ani (externally on left) and this caused MAJOR PAIN! It was off the charts, she also went into some other areas (nearby, not sure of names, but I can find out tomorrow when I receive a copy of my chart). I feel at my core that I have a mechanical problem or nerve entrapment going on, pt is a band ad, and lately not a very nice one. Any thoughts on what else this might be, besides pne? I am trying hard to ather as man ideas as possible before I leave for my appointment on Monday. (Tests that should be done, ideas for diagnosis, etc.). I have taken and am taking many meds, they take the edge off, but if I have to drive, forget it. Nothing works.

Thanks for your help,
Kara

[Karyn]

Hi Kara,
IMO, most PT's are excellent diagnosticians. They may not always be able to correct your pathology, but are quite adept at identifying it.
What kind of feedback have you been getting from the therapist? Your PT should have an initial assessement report, as well as progress notes and findings from your visits.
It would be helpful if you could get a copy of your records to get an idea of what you may be dealing with.
Kind regards,
Karyn

[janetm2]

Kara,
Although I had a similar path that does not mean it is the same. What happened to me was 2 rounds of levator any spasms then I was entrapped on the left side with the pudendal nerve squashed between the 2 main ligaments. PT was not helpful and was painful prior to TG left surgery but are now helping me to recover.wish I knew more but I only have my experience. I hope someone else has an idea along with Karyn's suggestion. Hang in there.
Janet

[kia kaha]

Just wondering what caused each of your current symptoms?
Eg
Trauma?
All I know at this stage is that I do have pudendal neuralgia. And It started from an accident where I sprained my pelvis. Which went undetected and untreated for 20 months.

I do not have any idea what mechanism is causing pn yet. Almost impossible to find someone who can because of where I live.

My current efforts are to get a public accident compensation corporation (ACC) to accept a claim of the injury so I can pursue diagnosis and treatment.

But ACC are saying there is no link between injury and diagnosis and no evidence to support injury even occured.

[Aleclucy11]

Thanks so much, I have a ton of questions, but think I am on the right path, more determined than ever. Thanks for taking the time to respond. I will post again after i meet with Dr. Marvel.

Warmly,
Kara

[Violet M]

Kara, I don't know exactly what Dr. Marvel did when he performed surgery on the perineal nerve. I agree we are all different as Janet said but wanted to mention that from my experience my levator ani and obturatur internus muscles were a mess before surgery and PT just made it worse. The pudendal nerve runs between those 2 muscles and they have completely calmed down since PNE surgery. Good luck as you try to get this sorted out.

So, Kia Kaha, are you saying that there were no eye-witnesses of your accident or that you did not have any medical care at the time so there is no doctor report you can rely on? I think there is enough literature on PNE to link it to a trauma but as far as proving the accident/trauma, that sounds like it could be a difficult problem.

Violet