Health Organization for Pudendal Education

I just had the imaging center of my hospital fax me the results. Let me just preface this by saying I don't know if they used 3T or not.

STUDY RESULT

Pelvis MRI without contrast 10/18/210

Indication: Vulvodynia, pudendal neuralgia. Evaluate for pudendal nerve entrapment.

Comparison: CT abdomen and pelvis 7/12/2010

Technique: Multiplanar multisequence MR imaging of the pelvis is obtained without intravenous contrast.

Findings:

There is no evidence of a focal lesion or edema along the course of the pudendal nerve on either side. There is no evidence of muscle edema in the visualized muscles of the pelvis.

A Small amount of free fluid in is noted in the pelvis and likely physiologic. An 18mm cyst is seen associated with the left ovary, likely a functional cyst. Small amount of fluid is seen in the uterus and is also likely physiologic in a menstruating female.

No evidence of bone marrow edema, acute fracture, dislocation or avascular necrosis involving either hip. No significant hip effusion on either side. No evidence of acute fracture in the visualized osseous structures of the pelvis.

Impression:
No definite evidence of a lesion associated with the pudendal nerves.

I see my dr in two weeks for a follow-up

Hi Griff,
Would you be comfortable undergoing the scan again, but with Dr. Potter? Based on your report, I don't feel confident the radiologist knew what they were looking for. There's obviously something wrong. Did you know about the ovarian cyst?
Warm regards,
Karyn

When I had my regular MRI they did a big write-up on the uterus/ovary pictures. Those little cysts come and go and we never know about them unless they get really large or blood-filled and painful; we only find out about them from a scan or a pelvic exam. Some can take 2-3 months to resolve according to my doctor.

I'm really not sure what to make of the stuff they said about the nerve not being swollen, etc. I don't remember if mine said anything about swelling. But none of these scans really tell us anything about the ligaments.

I think Dr. Potter's scans always come with different wording; she talks about perineural scarring, and I wonder if that is what this report meant when it said there were no lesions.

I'm glad you have a follow up coming to see if you can get more explanation. I'm also glad somebody would give you the information up front before the appointment so you wouldn't have to just wait the whole time not knowing.

I really don't know if going to Dr. Potter would get you something different or not. But what you do have right now is useful to take to a PNE doctor no matter what. It doesn't sound like they found any tumors or other issues that you need to be working on, and ruling that out is always valuable information to help rule in PNE.

Thanks for sharing this information; how are you feeling about things?

The MRN and Dr. Potter's scan are both designed to visualize more than a typical MRI; however there is also the factor of what the Radiologist is trained to look for: I wonder how much more data one could get by just asking Dr. Potter to view an existing MRI as a 2nd Radiologist opinion, and write her own report?

I would love for Dr. Potter to read the scans, but I'm not sure she does that from what I've read. I'm going to call and see if that's possible.

I have called Dr. Conway and was told he would call me for a phone consultation but have yet to hear back from him. How quickly could I get in to see Dr. Ansell?

I'm feeling pretty frustrated by the results because I have sitting pain and I thought this test would tell me why!

Just talked to Nina in Dr. Potter's office and she said right now she does not have time to read outside scans. She said "off the record" if I had my dr call her with the request there might be a possibility. So do I wait until I see my dr for the follow-up to ask him to call her? Or do I call his office and tell them I want my dr to call potter and request she read them?

Well, I think it couldn't hurt to call now and ask your doctor to send it to Dr. Potter. Maybe it would give you the ability to have both sets of results at your appointment next month?

Here is a link on how to contact Houston. You need to start with Dr. Renney, the team leader. If you called today you could get your email invitation tomorrow, probably, and start communicating next week. But to answer your question about seeing Dr. Ansell, that would be on your second visit. Your first visit would be for diagnosis.

http://www.pudendalhope.info/forum/view ... ?f=51&t=21

Thanks Celeste. That's really all I want right now is a freakin' diagnosis!

I'm going to have to wait until I'm a little less emotional to call my dr's office about requesting the scan be read by potter.

Griff,

Thanks for posting your MRI results. Based on your scan, I do have to agree with the other posters that perhaps the radiologist was not as skilled as Dr. Potter in imaging or reading the pudendal nerves. Good idea to call Dr Potter's office. You are on the right track. I think Potter's MRI is valuable as I had it done. However, although the PNE surgeons are doing their research as to its value, the true proof in the pudding will be when someone who has had a Potter scan has the same results found by their surgeon at the time of their surgery. Then, I think it will be a true breakthrough. I emailed Dr. potter and told her this. I said, you don't realize how much good you are doing for the PNE community. Your expertise could change hudreds of people's lives. The thing is though, we hae to have proof to convince the surgeons of that.

Good luck and keep us updated.

Celeste should be able to help you with Dr. Ansell/ Dr. Renney and with Hibner I know you just call Patti at their office and make an appointment.


A's Mommy

Well somebody must have put a bug in dr conways ear because he called me this afternoon from Chicago where his conference is being held. Seems like a nice enough guy and he told me there was no one he knew in this area that was knowledgeable about PN. We tried to go over my history a little and then he told me if I wanted to schedule an appt with his office that he would have me meet with his PA first and she would do the EMG test for me. He told me not go call until next week when he is back in the office.