Health Organization for Pudendal Education

Tyro,
Go to the first post on this thread for more info. It says to have your radiologist call Dr potter and ask for her protocols and it seems to lean to 3T but please review Shawnmellis' post. From other posts people feel this is a good step towards finding possible entrapment.
Janet

Thanks Janet. I'll have my radiologist call her office and see if we can work something out. Fingers crossed, because it would be a lot easier than traveling to NY from WA State and the long wait too.

That said, do you all think it would be worth waiting if I am not able to have my radiologist use Potter's protocol and software? Which is more important? The protocol or the software?

Sorry for all the questions.

I'm new to this forum so I hope I'm posting in the right place. I was wondering if there is a way for me to contact "Mary from Pittsburgh"? I am going to UPMC on April 2nd and would like to have as much information as possible when I see the Gynecologist there. Thanks!

I do know this I recently asked my doc for a scrip 2 see Hollis Potter and was assured we had our own 3T imaging here in CO using Potter's software. We do have such-but they have NO idea what they are doing with it. The reading showed everything on my right side and muscular, missed the surgery I had just months before which removed a large chunk of my ischial tuberosity and had severed all 3 of my hamstrings-there was visable skin and scar deterioation-my left side showed nothing-BUT that's where all my pain is & my surgeries. Besides the other surgeries I had less than a year and a 1/2 earlier which my PT said would have been noted by Potter. I have a July 11th with Potter, but my Ins.won't pay & I paid for the cracker jack one 2. So I'd say just pay for the right one in the first place=).

Wow, sorry this happened to you.

Violet

Thank you, Shawn.

I live in VA near DC. I can jump on a plane or take the train to NYC and see Potter. I could also drive to Richmond and have the radiologist there do it, read it and write up a report, but it's a toss up as far as traveling hassles. I would have to stay overnight in either case. I would rather have a Potter MRI, read by her, and with her report, so I guess I will call and make an appt.

Anyone have the "script"-the prescription, for the MRI?

Bathsheba

Violet-

Now I am wondering whether it's worthwhile to even get a Potter MRI if all the MD's think it's worthless. My case is a little different from others as it results from surgical trauma. No cutting was involved, just blowing up the bladder (see Larry's story). One neurologist says the PN could have just been stretched, not entrapped. Thinking out loud. Would the Potter MRI in my case be worth it to determine whether the nerve was entrapped by the procedure or just stretched? I have no insurance.

Bathsheba

Sorry, Bathsheba, I am still catching up with reading the forum after a trip -- I hope this reply is not too late. I don't think all surgeons are totally discounting MRI results especially if something definitive shows up. If you are certain you would not ever want to go for PNE surgery, I'm not sure what point there would be in having an MRI. If you are thinking about surgery but just need further confirmation of a likely entrapment before making up your mind it could be worth it because it might help you decide on which approach might be best for you. But notice I am using the word "might" a lot because there are still so many unknowns in the diagnosis of PNE.

Heading to NY to Get my Potter MRN-please say some prayers for me Anybody!!! I am so desperate-It'sd going on year 7 & I have so many uneccesary surgeries and we are near broke, besides a bad pain dr. that's suing us for slander becuz Iwrote him a bad review. We've been fighting this for about a year now-uber expensive! I just need some relief--we all do! But fighting a disease we don't really know where to start is mind numbing! Anyway wish me luck & could really use some prayers more than anything-will report back the findings.

Hi ysaba196,
You poor girl, I will pray the potter MRI sheds some light for you. Please let us know what the test results are.

Debbie