Health Organization for Pudendal Education

Hi Everybody,

Just had an MRI in which they tried to recreate Potters' Protocol, but I have no way of knowing if the local radiologist knows how to read it or if it was truly done to specification...etc.....

When I called for results, this is all the nurse read: "No pelvic anatomical abnormality to explain Pudendal Neuropathy"

This was a bit of a shock as I am made worse by so many physical positions/actions.

So if there's truly not an anatomical explanation (scar tissue on ligaments...etc....)....What' left? A disease process? Well I've been tested for everything twice and all is negative. I don't think my pain is from the Endometriosis I had either.

My neurologist thinks there are many nerves involved.

Has anyone had a so-called Potter MRI at another medical center and sent the MRI to Potter for interpretation?

Any thoughts, theories, feedback appreciated. I'm sick of trying to figure this out.

Less pain,

Jackie OUCH

Jackie,
So sorry the test was not conclusive. Unfortunately there are no truly conclusive tests for PN and PNE from what I have seen but rather the PN doctor pulling together bits from your case, symptoms, life events, and the tests. I was clearly PNE but that did not show up on the MRN I had. If Antolak and Hiber think you have PN I would probably take that over the MRI, although it would be better if you had some proof and the statement certainly sounds like it is not PN? I did get relief with the nerve blocks and no extra pain so that gave me better proof, again sorry you are not having better luck. Maybe someone else has better info on whether the there is another reason I am not sure all PN and PNE would be pelvic anatomy since my PNE was due to tightening of the two main ligaments basically squashing the pelvic nerve.
Janet

Thanks for your reply Janet.

Hibner did not really think I had PNE.....He thought the PN was affected, but the main culprit was something else.

From what I understand Antolak diagnoses EVERYONE he sees with PNE.

You bring up a very good question about whether or not all areas of the pudendal nerve would be covered by "pelvic anatomy"....such as the ligaments...etc......

Was your surgery successful?

I hope so.

Thanks again,

Jackie

Jackie,
I am saying there is success not fully but I am glad I had the surgery because I felt it would get worse. The pain levels are down and I take meds as needed and no longer take them daily. There are still limits but I am able to work 80% or so which is enough until I retire in 2016. I can sit and go out to eat but still get up as much as possible especially at work. I am learning my limits and what puts me out of pelvic alignment which is one of the challenges since surgery. I hope you find a way to lower your pain and get a treatment plan. Take care
Janet

Some differentials to look into that would not show up as pudendal compression on an MRI: Pathology of the spinal nerve roots instead of within the pelvis, hernia, SIJD, pathology of the pubic symphysis, neuropathy of the nerves within the inguinal canal (ilioinguinal, genitofemoral, iliohypogastric). Probably lots more.

Hi Jackie,
I had a 3-T MRI last summer with someone who was supposed to be the equivalent of Dr. Potter. Not so much. They didn't pick up any abnormalities and even commented that my SSL's and STL's appeared in tact. I don't have SSL's.
Because I had an MRI with Dr. Potter a couple of years ago, my ordering physician made arrangements for me to have Dr. Potter re-read the imaging study. To make a long story short, she wasn't able to read the images as presented. She did note the absence of my SSL's, though.

JackieOUCH wrote:You bring up a very good question about whether or not all areas of the pudendal nerve would be covered by "pelvic anatomy"....such as the ligaments...etc......

Good question, indeed! I recently had yet another pelvic MRI. I spoke with the Tech before the procedure, asking if the radiologist reading my images would be able to detect soft tissue abnormalities (Ishcial Tuberosities, ligaments, hernia, neuroma, scarring, rectus abdominous, etc ...). I also made a point of explaining that I had a total hysterectomy a few years ago and was well aware that I don't have a uterus or ovaries anymore. The Tech replied, "Of course! They're all part of the pelvis, after all!" She even noted my concerns for the radiologist. So, I get the report and it states: The uterus and ovaries are not visualized, consistent with surgical history. No intrapelvic abnormality except for post surgical changes. Sigh ....
And yes, they were aware of my PN decompression and abdominal neurectomies. For some reason, these were overlooked. However, he did note:
I do not see a clear abnormality of the sacrum except for incidental presence of a 1.7 cm Tarlov Cyst in the sacral canal along the distal sacrum.
Unfortunately, you may have to go to NY if you really want to get to the bottom of your pelvic pain. Dr. Potter is not in the habit of reading other radiologists images; especially if you've never been to HSS before. And even then ....
Hugs,
Karyn

Thanks so much for your replies!

I was afraid of this. I will probably have to go to New York, but you all know how hard it is to travel with this problem.

It never ends.

Jackie OUCh

Agreed, Jackie. We really don't travel well.
I wish you the very best, with whatever you decide!