Health Organization for Pudendal Education

Griff522 wrote:

What I want to do is continue with my PT for now, schedule a MRI with DR Potter and see what the results are. If there is no entrapment or problem and my current PT doesn't improve my pain, then I want to travel to Jerry Hesch. If there is entrapment and some kind of surgery is needed I would probably try to see Hibner. That's the plan I have been considering. Now I need to talk it over with my husband and get him onboard.

Griff,

I agree with Karyn that the MRI with Potter is a great idea. However, (and these are Dr Potter's own words to me) "the decision to have surgery should be based on clinical symptoms and not on MRI findings." So, it's a great idea to go have the MRI if it will lead you to seek out a PNE specialist, but I believe that clinical symptoms are most important, too. Then again, I'm not a doctor... they know best. Dr. Hibner is great and I'm glad he did my surgery. Now it's just up to God and time for the rest. You need to feel comfortable w/ what surgical approach you will take.

I applaud Karyn's decision to go to see Shobeiri even though he is new, because everyone was a "newbie" at one time. Dr. Hibner's first PNE surgery, on a gal named Ramona, was 100% successful. Shobeiri is a pelvic reconstructive surgeon and I'm sure he is up to date on all his training and knowledge of the PNE. Experience is good, but a surgeon's confidence in that area is paramount. I personally loved the idea of the neurowrap because after reading about it and it's use in plastic surgery, I felt more confident knowing that it at least helps prevent future scar adhesions. It may cost more, but who knows. I didn't get my bill yet and I hope I never do.... if I do get a bill we are going to find the medical director of our insurance company, hunt him down, and badger him till we get our way (LOL).

Good luck, Griff, and don't hesitate, make your appts sooner than later. You can always cancel.

With love,
A's Mommy

A's Mommy wrote:I applaud Karyn's decision to go to see Shobeiri even though he is new, because everyone was a "newbie" at one time.

Thanks for the support, AM! I guess this will be a learning experience one way or the other for all of us! I do know for a fact that Dr. S. uses the neurowrap, too. I'm pretty sure all TG surgeons (with the exception of Houston) use the neurowrap.
Love ya, AM! Mmmmwaaaaaaa!!!
Griff - what kind of improvements have you been experiencing with PT? Maybe you could start another thread under the PT topic ... we're getting off topic here .
Warmest regards,
Karyn

A's Mommy,

What exactly do you mean by "clinical symptoms"?

Linda, I'm not A's Mommy but in answer to your question about clinical symptoms that would be the things listed
on the symptoms page of the website http://pudendalhope.org/node/9:

The main symptom of pudendal neuralgia (PN) and pudendal nerve entrapment (PNE) is pain in one or more of the areas innervated by the pudendal nerve or one of its branches. These areas include the rectum, anus, urethra, perineum, and genital area. In women this includes the clitoris, mons pubis, vulva, lower 1/3 of the vagina, and labia. In men this includes the penis and scrotum. But often pain is referred to nearby areas in the pelvis. The symptoms can start suddenly or develop slowly over time. Typically pain gets worse as the day progresses and is worse with sitting. The pain can be on one or both sides and in any of the areas innervated by the pudendal nerve, depending on which nerve fibers and which nerve branches are affected. The skin in these areas may be hypersensitive to touch or pressure (hyperesthesia or allodynia).

Possible symptoms include burning, numbness, increased sensitivity, electric shock or stabbing pain, knife-like or aching pain, feeling of a lump or foreign body in the vagina or rectum, twisting or pinching, abnormal temperature sensations, constipation, pain and straining with bowel movements, straining or burning when urinating, painful intercourse, and sexual dysfunction – including uncomfortable arousal or the opposite problem, decreased sensation.

Can anybody tell me which doctors in California are qualified to perform PNMLT or any of the other electrodiagnostic testing to rule in/out PN/PNE? My new pain mgmt physician would like to know (I was hoping he knew of someone I didn't, but he's looking for someone to help evaluate other patients). Thanks!

There are a couple of doctors on our list but there may be others we aren't aware of. Dr. Mann is in Northern CA and Dr. Jordan is in Southern CA. You can find their contact info here:

http://www.pudendalhope.org/node/58#CA