Health Organization for Pudendal Education

Still wondering if I should have the Potter MRI in July?

Wondering what I will do with the results?

I don't want to have surgery....But could it help pinpoint the exact area for nerve blocks? Or some other advantage?

Has anyone else gotten useful information from the Potter MRI, and found a successful treatment other than surgery?

Thanks.

Jackie OUCH

Hi Jackie OUCH! I had a Potter MRI and it came back completely normal. I think it would be beneficial because it may show an abnormality and you can then start working on a solution. If anything, you may be able to start ruling diagnosis' out

Hi Jackie,
I sent you a PM the other day, not sure if you got it, but I would love to talk to you.
I'm glad I had my Potter MRI, for me it's confirmation of my pain, regardless of what the docs say. You had the MRN, so I guess you have some info.
But a current MRI might reveal something else, and you can compare.

I know it may not change your course of treatment right now, but what if something else is discovered? I feel with this condition, you can leave no stone unturned.

take care now,
Debbie

Hello

I have the same question. It used to be that the Potter MRI was the "gold standard." Now it appears that some of the doctors operating on people with PN either totally discount her (or any) MRI's or open people up and find out that her "results" are not accurate.

I have no health insurance, so it would cost me $3,500 plus travel and lodging to get a Potter MRI. If I were sure that it would be accurate, I would have it done just to know what the results are. (For example, although my PN definitely resulted from a blown up bladder, the PN may have just been stretched by my blown up bladder without being entrapped. In that case, surgery will not help.)

Anyone have any independent analysis of why some doctors are rejecting her MRI's or who is finding them to be inaccurate? Also, if so, is there a reason for this? Are these surgeons just trying to promote their own forms of pre-surgery tests and throwing valuable information away? I am on a very limited income, so it would be a real hardship to have this done unless it's truly "worth it."

Bathsheba

PS FYI, Dr. Potter is sharing her special algorithm with other radiologists around the country who have 3T MRI's so that these radiologists can also do MRI's that "see" the PN in the Alcock's canal. I know there are radiologists in Richmond, VA and in Pittburgh, PA who are using her algorithms and there may be more. She is very generous to share this information.

Bathsheba, I could be wrong but my guess is you could compare the Potter MRI to having a lumbar MRI. Some people who have a lumbar MRI have bulging discs with no symptoms at all while others definitely have severe pain with a bulging disc. Similarly, my guess is an MRI of the pudendal could show pathology but whether or not that pathology is the source of the pain can be difficult to determine.

One patient reported that Dr. Martin, the orthopedic surgeon in Oklahoma City was very impressed with the clearness of the images on the Potter MRI so I suspect it is not the accuracy of the images that are in question but whether what is seen on the MRI is the cause of the pain. This is just my speculation -- hope it makes sense.