Health Organization for Pudendal Education

I'm interested in talking to any patient that has been treated in the Tulsa, OK area, finding out which doctor they saw, and the treatment plan. Also, what has been your journey, and are you considering surgery.
Please contact me. Thanks, julieh

Hi Julie,

I'm in Oklahoma City. Have we talked before via PM on the other site?

Here's what I've done so far:
Two bilateral PN blocks and the PNMLT with Dr. Shobeiri here at OU Med
physical therapy with two different PT's, one at OU Med and one in Edmond. Am currently working with the one in Edmond.
Tried meds, haven't had much luck with anything other than vaginal Valium

I haven't ruled out surgery, but am not currently pursuing it. I haven't decided which direction to travel (south to Houston? west to Hibner? etc.) should I head down that route! Although, with the flare I'm experiencing this weekend, surgery looks appealing. Of course, once it dies down I'll go back to fearing surgery. Predictable pattern

There is a poster, KMC, who recently had the modified TG surgery with Dr. Shobeiri this summer. He has only performed four PN decompression surgeries.

Take care,
Lauren

I haven't been on the PN forum for a long time and apologize in advance, I don't remember who I communicated with. For me surgery wasn't the route to pursue, because the SI irritates the PN and when the doctor says he's not sure the nerve is even entrapped until he gets inside, that just doesn't convince me.
I am pleased how the neuro-stimulators have helped my urine and bowel issues associated with PN. I knew they wouldn't be a cure, yet sadly everything is a band-aid. Yes, I will be required to have the stimulators replaced every 2 to 3 years, which means $ and surgery recovery. Reading others posts on the decompression surgery, it seems to only be a band-aid for many too, wish the statistics of complete success were higher and more convincing.

I'm specifically trying to find any patients of Dr. Marinis from Tulsa, OK on this forum. He claims he has sent 5 patients to MN that have had the PN surgery, and I would love to verify this and learn how they're doing. Also, he works with Dr. Antolak, yet he isn't on the site or mentioned anywhere, yet I did trust him to do my ischial spine injections, because he was the only one I could find. I didn't know about the OKC doctor at the time. Driving over 2 hour to OKC wouldn't be doable anyhow with my kids and their schedules.

Do you work? I haven't been able to. I still have flare-ups too. I sit with a cushion and plan my entire life around these 2 questions - "How long will I have to sit/drive?" OR "How long will I have to stand before my feet and back are screaming?" You know what I mean!

Julie

Julie,

I'm pleased for you that the neuro-stimulators helped with your bladder and bowel issues.

I remember now that we did correspond briefly, since you mentioned Dr. Marinis. I believe he used to work with Dr. Shobieri? Dr. S also trained with Dr. Antolak. There is another doctor in OKC who does PN blocks and I believe Botox, an interventional radiologist named Dr. Beall. I have not seen him. I would also be very interested in meeting/corresponding with patients from Oklahoma who have had PN surgery anywhere.

Are you considering PN surgery now?

I do work. I am a high school teacher and commute an hour round trip every day to work. Not ideal, but my husband is in full time graduate school to become a PA, so we need my income. I will say...if my husband had a job and insurance benefits, I would quit in a heartbeat. I had very very low pain levels this summer when I was off work and lived a very normal life--went out to eat, drove everywhere, took a class towards my masters degree, etc.

Now that the school year is in full swing, I'm much more limited. I completely understand the questions of "Can I sit for this event?" "Will it be feasible to stand?" "How are my pain levels--should I turn down this invitation?" etc.

There is a group on Facebook that has a few Antolak patients. This could be a good resource for you if you were interested in pursuing further treatment with Antolak. If you're a Facebook member, you can search "pudendal neuralgia support" to find it.

Take care,
Lauren

Hi strategies55,

Have you tried pelvic floor physical therapy during those four years? I know the PT I go to in Edmond has patients drive from Tulsa to see her. She treats both men and women. Her name is Debra Clark.

Dr. Marinis in Tulsa is PN aware, but I think he only treats women. I know Dr. Shobeiri in OKC only treats women. There is an interventional radiologist in OKC Dr. Douglas Beall that performs guided pudendal nerve blocks, if you're interested in trying blocks. I believe I heard at one time he also administered Botox, but I'm not quite sure.

There's lots of good information on this forum and also on the website's pages regarding decompression surgery and other treatment options. Do your own research on each surgeon. You'll notice people have lots of strong opinions on different surgeons, but you need to decide for yourself who is best for your case.

Best of luck.
Lauren