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

One more thing.....acupuncture makes me worse for about 24 hours after, and then I go back to my baseline pain.

Jackie, I can't answer your question about Potter reading the MRI but it's certainly worth a try. The MRI's aren't considered 100% accurate no matter who reads them though. It's always hard when nothing shows up on the tests but you know there is something wrong.

Violet

Ever get checked by a PT for SIJD? It rarely has visible manifestations on an MRI, because it is a dysfunction of movement especially during flexion and extension, not something likely to appear when you are lying still in a neutral position. It causes muscular and neuro tension throughout the pelvis.

Don't get discouraged over the MRI. You can still be entrapped and it not show up on the MRI. There is the possibility that the facility did not 100% do the exact MRI protocol of Dr. Potter and the radiologist doesn't have the experience of reading the MRI like Dr. Potter. Potter did my MRI and it did show entrapment but it didn't show all my entrapments of the pudendal nerve that Dr. Hibner found during surgery so there are limitations to her method. You should also ask if there was a Tarlov cyst. Many radiologists won't report this finding because they didn't consider it important. Also, like Hermajesty said, it could be SIJD.

First of all, thanks so much for responding to my post.

Just got back from having Dr. Potters' MRI in New York. No results yet.

A few complications:

The script was written by a Nurse Practitioner at my Pain Management facility.

When I got to NY, they initially refused to do the test without an MD prescribing it.

In my state a Nurse Practitioner CAN order MRI's so this never occurred to me. Of course the script was faxed to them weeks ahead and no one notified me of this.

After contacting the Pain Management facility in my state they realized that the Nurse Practitioner has a medical license number which is really all they needed to complete the paper work.

Here's where it gets' really complicated......I called NY ahead to make sure the MRI was covered by my insurance (Medicare), they said YES, but it turns out that I have an HMO version of Medicare and they will probably not cover....

The test will be around $3000....I said I would pay and appeal later

I have read the appeal area of this forum - which is very helpful. So, I assume I wait for them to reject and then have a few of my physicians write "A Letter Of Necessity".........any help with this would be appreciated......Like most of you, I cannot afford this.

Just thought I'd give you all a heads up on possible complications/red tape.....and hoping you have some ideas.

How on earth do any of you fly? The flight was only 2 hours, but the pain from sitting got so bad by the 2nd hour I couldn't stand to sit one more minute. Sitting on soft surfaces is really not too bad, but the cheap airplane seats really were awful!!!

Less pain, more understanding.

Jackie OUCH

Hi Jackie,
Less pain, more understanding is right, you said it. How stressful for you. I brought my special little squishy cushion I use in the car, and sat on that. It helped, you are so right the airplane seats are crappy.
But flying to AZ was worse as it was longer. I did have my husband with me, that helped too.
In a few weeks I'm flying to Denver, not looking forward to it. My husband wants a vacation, a real vacation, not a medical vacation if you know what I mean.
So I'm going, and hoping for the best. My squishy cushion is going along of course.

I hope your new MRI shows something helpful, and gosh I hope they are wrong about your insurance not paying, what the heck!

best to you,
Debbie

Jackie, I used to fly at night and lie down in the extra seats when possible but it seems like flights are more crowded these days. I also used to take extra pain meds.

What a nightmare you must have had in NY! It sounds like you made all of the best decisions you could under the circumstances but what a mess.

The medically necessary letters from your physicians are a must but ideally it would be nice to include some peer-reviewed literature in your appeal. I can't remember if any of the literature on PNE recommends MRI for the diagnosis -- that might be tough to find. You could check in some of the main publications such as Hibner's article on Pudendal Neuralgia (on our publications page on the website.) Good luck. I hope you can get this paid for.

Best,

Violet

Thank you Violet.

Using publications as a verification is an excellent idea.

Best,

Jackie OUCH