Health Organization for Pudendal Education

Hi there,

Your wife's symptoms sound almost identical to what I've experienced. Especially with the bladder thing and the whole IC workup and the PT trial. I feel so bad for her. I am a young mother and it's agony when you feel like you can't be there for your family. It is so honorable that you are here on HOPE trying to find help for her. I'm not a physician by any means, but it does sound like PN. The only thing you mentioned that I would question is the lack of relief from the nerve blocks. Maybe she needs to go to someone who really specializes in the pudendal nerve blocks. I don't know where you live but you said you are a 5-6 hr. drive from Dr. Conway. Perhaps consider the 3Tesla MRI with Dr. Hollis Potter in NYC. I flew there from PA. It was a great thing.

Will be praying for her, and you and your kids,

Sincerely,

A's Mommy

Hi there,
I totally agree with A' Mom.The best route for you is to get 3 tesla MRI by Dr. Hollis Potter in NYC and then proceed with an appointment with Dr. Hibner for her issues provided she has PNE.
The following link will help you to get an appointment with Dr. Potter as well as the script.

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

Hollis G. Potter, MD Chief, Magnetic Resonance Imaging Hospital for Special Surgery Professor of Radiology Weill Medical College of Cornell University

The address is as follows.
Hospital for Special Surgery
Magnetic Resonance Imaging
535 East 70th Street, New York NY 10021
Basement level

Appointment Desk
Tel 212-774-7296
Fax 212-774-7295

The script should be as follows.
MRI of the Pelvis
Bilateral Pudendal nerve
1) From ischial spine to Sacro Spinal ligament beneath Sacrotuberous ligament and to the Alcock's canal.
2) Dorsal Nerve of the Clitoris or Penis especially passing through the Pubic bone.

To be reviewed by Dr. Hollis Potter:

Please have it faxed to 212-774-7295 by your doctor.
and then call MRI department at 212-774-7296 to schedule an appointment.


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You can also proceed with an appointment with Dr. Conway
to have a physical exam as well as the EMG testing.EMG testing is a borderline testing ,but it isn't an accurate test.Don't proceed with the nerve blocks with Dr. Quesada because they usually make people worse.

Best Regards,
Ali

Do you have any idea what caused her symptoms? Was there an accident, surgery, heavy exercise, or childbirth? The reason I ask is because her history is important in determining what is going on. Many of her symptoms sound similar to pudendal neuropathy but there are many different causes of PN and different types of PT, some of which are effective and some that make you worse.

Also, you say she has been to a chiros and PT's. Are they saying anything about sacroiliac joint dysfunction, strained ligaments, or pelvic misalignment or giving you any idea as to why she is having weakness standing up?

The nice thing about the 3T MRI with Hollis Potter is that it is not invasive at all -- no risk for getting worse and like Ali said, sometimes the PN blocks can make you worse.

Violet

How did your visit go with Dr Conway? Regarding surgery, it is a difficult question at best. My wife has been suffering for 2.5 years and had three surgeries over the past 16 months (long story). We are now at the crossroads again debating if we try a forth. What ever you decide to do make sure you do your homework and understand the risks. My wife is not better today and if anything slightly worse then prior to her surgeries. The Doctor has the credentials but they are not helping her. The issue we found is that once you have surgery with a doctor you feel somewhat stuck with that surgeon since he/she knows your history. Best of luck.

n4061 wrote:How did your visit go with Dr Conway? Regarding surgery, it is a difficult question at best. My wife has been suffering for 2.5 years and had three surgeries over the past 16 months (long story). Has she been suffering with PNE? Sorry if you posted this before somewhere else. Was she treated by Dr. Conway? We are now at the crossroads again debating if we try a forth. Those are a lot of surgeries. I feel for you as I have had a lot too, although only one PNE surgery, just recently by Dr. Hibner (it's way too soon to see any results yet) What ever you decide to do make sure you do your homework and understand the risks. My wife is not better today and if anything slightly worse then prior to her surgeries. The Doctor has the credentials but they are not helping her. Are they PNE docs?The issue we found is that once you have surgery with a doctor you feel somewhat stuck with that surgeon since he/she knows your history. Best of luck.

Thanks for answering these questions for the forum,

A's Mommy

Yes she has PN. First surgery was right side only. No improvement. Then her left vulva started to act up so we optioned for bi-laterial surgery of the Obitrator-internus and Piriformas muscles. Six weeks later she was almost pain free and driving short distances. After sitting for 2 hours one day after the shopping all hell broke loose and she had worse pain. Dr. Filler said the nerve shifted and was touching one of the sacral ligaments. A semi-emergency surgery was performed to cut the ligament and that pain went away. We are now back to the original PN pain on both sides. So why did she have a few days of no pain after the second surgery? In fairness to Dr. Filler he told us from day one she was not a typical PN case. Original nerve blocks did nothing! 3 out 4 last injections did get her temporary relief, so he knows the spot. This is living hell for her. Hang in there.

I am no doctor, but with all of your operative reports, etc,'and previous MRI or MRN reports and/or images, maybe you can go to NY and have a 3Tesla done by Hollis Potter. I know your wife has had a lot of surgery, but I believe in Potter's imaging and if you give her the information before the scan was done, maybe she could really zero in on those areas and provide you with some answers and/or hope for a new direction.

I have complete faith in Potter as her scan showed exactly what Dr Hibner found during my surgery.

AM

doherty,
that sounds like PN to me. very similar to my story.

A's Mommy's advice I agree with also.

n4061, no doctor should do so many PNE surgeries in succession so rapidly... I would advise finding a new specialist. This comes from my personal experience seeing the same doctor... I just don't hear any success stories and looking over my own medical records, I see inflated reports of my progress that do not match my actual situation at the time. Perhaps your wife's 2 pain free hours were due to high pain meds post surgery?