questions about MRI suggesting pne

[April]

Earlier this week I had 3T MRIs done of my lumbar back and pelvis, with the pelvis images following the Dr. Potter protocol. I did these MRIs because I wanted to determine if my back problems were linked to my pn. But, the report indicates that problems in the lumbar back are only mild and that there are no problems in the sacrum. But the report on the pelvis indicates that the images are “highly suggestive” of pne. Here is that part of the report:

“Enhancing fluid and edema is in the posterior left side of the pelvis interposed between the left ischial spine and the sacrospinous and sacrotuberous ligaments. The enhancing fluid extends anteriorly and longitudinally along the medial surface of the left anterior obturator fascia measuring 3.7 cm in length on the sagittal images. Finding is asymmetric where there is no edema or associated enhancement. Findings are highly suggestive of pudendal nerve entrapment by compression between the ischial spine and the sacral spinous/sacrotuberous ligaments.”

This report matches my symptoms (bilateral burning but the stabbing sensations on the left side that feels like it is just above the ischial spine). I am glad to finally have a report that gives me some direction, and in the coming months, I will consider my pne surgery options. But I have a couple of questions that I thought others on the forum might be able to help me answer:

1. Is it a good idea to have another (or even third) radiologist read these images before moving forward with surgery? I ask this question not because I see any problems with this report (in fact, this radiologist's very detailed report suggests she was very careful and thorough), but because it's usually good to get multiple opinions. And if so, does anyone have radiologist recommendations?

2. Does this report sound like the reports that other pne patients have gotten?

3. Does anyone have any suggestions (based on this report) regarding which kind of pne surgery would be the best? I do not have any ligament problems, so I don’t think I’d be especially vulnerable to ligament problems after the transgluteal approach.

April

[Violet M]

Hi April,

Well, I'm sorry to hear you may have PNE. It's not something I would wish on anyone but I guess there is a certain amount of benefit in knowing what it is you are dealing with.

You could ask the radiologist who works with Dr. Hibner to read the MRI. In the past it was Dr. Kalinkin but I don't know if she is still there.

I don't remember any MRI's that read exactly like yours but no two people are alike with this disease.

The TG approach seems to be the most open with the best visualization of what is going on inside with the potential for the most complete decompression, especially for a compression at the ST/SS ligaments at the ischial spine.

Violet

[April]

Yes, it was a relief to get some direction. Thanks for all the suggestions. In in a few weeks, I'm going to get in touch with Dr. Hibner's office, and I will ask if his radiologist could read it. It would be interesting to see if s/he could see any evidence of this on the MRI I had done there in Dec. of 2016. Perhaps it was smaller then and was missed. I contacted Dr. Potter's office, but she cannot review them (their office is too busy reviewing the ones that they scan there.) The TG approach does seem like a safe choice if I want to maximize the visualization.

Another update came yesterday. I had a phone consult with Dr. Irwin Goldstein, and he did not think I could have pne since I had no trauma to the pelvis. So he and his spine surgeon (Dr. Kim) are going to review the MRI to see if they think my back is the source of the pain. I would far prefer back surgery to pne surgery, so I am hoping that they can establish that, but I'm doubtful.

Thanks again.
April

[Violet M]

It depends on what trauma to the pelvis means. For me, exercise was causing trauma to the pelvis to the point where the ligaments became chronically strained and I developed pelvic misalignment and instability. As a result, the ligaments were putting pressure on the pudendal nerve, especially on one side where my worst pain was.

I don't know if the MRI's done with Hibner's radiologist are 3T or just 1.5T. They used to be just 1.5 T but the Potter MRI's are 3T. So maybe there will be a difference. If one of your MRI's was 3T and the other was 1.5.

Violet

[April]

Hi Violet,

Yes, I would think the exercising that we did would count as trauma. I guess there just wasn't enough time in the phone call for me to fully explain the intensity of my step machine workouts. One of the first things Dr. Hibner told me when I saw him in 2016 was that he started work in the area of pn after two of his patients who were both kickboxers started experiencing the same type of pelvic floor pain. He said he eventually determined that the repeated strain created by that kickboxing motion had created the pn and that that discovery led him to do research and clinic work in that area. So, I think he was telling me that my step machine routine probably created a ligament strain similar to what those kickboxing patients experienced.

Yes, I think the 3T MRI imaging probably made a big difference between the 2016 and the 2018 MRIs. I also think the specific images in the Dr. Potter protocol are important. The tech told me that the radiologist and the techs had to do some homework in order to figure out how to get those exact images. So, it sounds like this protocol is very different from the typical pelvis MRI.

April

[Violet M]

That's pretty cool that your MRI techs and radiologist were willing to do that extra homework to figure out the Potter protocol.

Violet