Health Organization for Pudendal Education

Hope you get some answers from the scan. Fingers crossed for you.
Take care,
Helen

Hope all goes well for you with the scan and I'm sorry you are also facing a legal battle in addition to your pain.

Best,

Violet

I am trying to get UCSF in San Francisco to start offering scans with this protocol. I've made some headway but no final answer yet.

Wondering what the latest is concerning the Potter MRI protocol being done in other states. I am considering decompression surgery, but haven't had the Potter. Do you think it is necessary or can Dr's go by symptoms only? Not sure if I am entrapped or just have scar tissue.

It's nice if you can get the MRI but they aren't 100% accurate from what I am hearing. I was diagnosed without it. If you are really not sure of your diagnosis and your pain levels aren't quite to the point where you are willing to risk surgery no matter what, then I can see the MRI as being valuable as a possible tool to give you some additional info.

Violet

Hi everyone. I hope someone can help me. I feel totally confused. After a big to do, I got an MRI at the hospital for special surgery. Now that I'm thinking about it, I don't know if it was looked at by Potter cause the secy told me that she doesn't always look at all of them, but that her staff is well trained. My gyno went on vacation so I didn't get the results till this week (which she said were 3 pages long and which she doesn't seem to understand) She read me some highlights over the phone 'no pudendal scarring' Varicose Veins near Alcock's canal and scarring on the Levator Ani muscle. I was all excited thinking this could lead to an end to my 16 year long saga of insanity and then I realized I don't know what to do now? Do I make an appointment with Potter to tell me what to do next? Does she see patients? My gyno has made it clear she doesn't know anything about it (my PT told me to get the MRI and the gyno simply wrote out the scrip and seems rather put out to be in the middle of all of it) This sounds crazy but what exactly does one do with the results? I was supposed to receive a faxed copy of the 3 pages but the Dr. either didn't have time or forgot, so, even though I'm practically losing my mind wanting to read them myself, all I have now is the 3 tidbits she read over the phone. What should my next step be? I'm in NYC. Who do I see? I swear, this condition is maddening. I want to try nerve blocks but realized I have no idea who does them. I'm not sure how much more of this insanity I can take.

Lily, maybe as a start you can call HSS or your physician's office and ask how you can get a copy right away. You have a right to a copy of your medical records although some places charge a small fee for them. Or maybe HHS or your doctor's office will fax a copy to your PT at no expense to you. It sounds like your PT might be familiar with these MRI's since she recommended it and maybe she will be able to explain it to you. At the very least she should be able to explain the anatomy to you. There are some excellent PT's who treat PN in the NYC area. Hopefully you have one who is experienced in this area. Is PT helping you at all?

Lots of people have pelvic varices without having pelvic pain so that may not really be a conclusive finding as a cause of your pain. The pudendal scarring and scarring on the levator ani muscle may or may not be significant. Unfortunately, pelvic MRI's aren't 100% diagnostic when it comes to pudendal neuralgia and pudendal nerve entrapment. Sounds like you may want to find a doc who understands and treats people with PNE. Your PT might know someone in NYC who treats PNE. Unfortunately, a couple of docs who treated people with PNE in NYC have just retired so I can't tell you the name of a good PNE doc there right now. Hopefully another forum member will know someone.


Since your gyn doesn't seem to have a clue you might want to get established with a pain management doc who will prescribe some medication for you to get the pain under control. In the meantime, temporarily you can use ice packs or heating pad, whichever works, to try to calm down the pain.

Violet

Hello Everyone,
I was wondering is there a Dr. or Radiologist in Michigan that follows Dr. Potter's protocol?
I am not sure if I am able to travel and I have been battling possible Pudendal Nerve and pelvic scar tissue from Endomitriosis surgery.
Thanks!

Dr. Filler has an MRN site in Michigan. I don't know how the MRN compares to Hollis Potter's MRI, but his report might provide useful information for you. Unfortunately, Dr. Filler does not (to my knowledge) accept phone calls so pretty much the only thing you get is the report unless you are willing to go to CA for a consultation. Has anyone had the MRI with Dr. Potter, the MRN with Dr. Filler, and/or the MRI read by Dr. Kalinkin at Dr. Hibner's office? It would be interesting to compare the results.

When dr hibner saw my results of dr potter's MRI he said it was normal scar tissue. Dr potter sai I am re entrapped at alcocks canal and sciatic nerve is partially entrapped after second surgery. Now who is right?????