Hello, New to Site

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: Hello, New to Site

Post by pianogal »

The MRN Neurography sees the images at half the resolution of the 3Tesla MRI, I believe. Also, I've had surgery and multiple visits with Dr. Filler and have met with Dr. Hollis Potter personally yesterday for the 3Tesla. I've had the MRN and the 3Tesla MRI. My vote? Go with Dr. Hollis Potter and the 3Tesla. She was caring enough to have me meet her in her office and go over the results even though this isn't normal protocol to meet with the radiologist. (not everyone has gotten to meet her though) But through meeting her I saw a deep knowledge base and a very caring heart. With Dr. Filler, there is a LOT of waiting, a LOT of expense, and little time with him, and little empathy, and confusion as to his direction in my opinion. When I met with Dr. Potter, she said right away, "You hurt more in your right side then your left, right?" She was right. When I had the MRN with Dr. Filler, he thought there was more problems on my left side, even though my right side hurts much worse. And surgery with Dr. Bautrant in france confirmed that my right side was worse. So please, don't waste your money or your time going to Dr. Filler. His success rates and his "titles" as world leader in nerve pain are fabricated by either himself or a PR team, I'm convined of it. Because when I had a failed surgery with him, 80% of the notes written up on me said I was doing "great". It's a money grubbing office. Go to Dr. Potter. I'm not a doctor, and choose what you feel led to do, but I'd like to save you some time in this painful boat we're all in.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
User avatar
Charlie
Posts: 214
Joined: Fri Sep 17, 2010 11:48 pm

Re: Hello, New to Site

Post by Charlie »

Pianogirl I am just curious here. I notice in your signature that you have had surgery with both Filler and Bautrant. Is Dr Potter reccomending further surgery after seeing your scan?

Best of luck with whatever you decide to do and I really hope you get better.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: Hello, New to Site

Post by pianogal »

Dr. Potter was thinking I could try steroid injections into the region of the dorsal nerve of the clitoris in lithotamy position, so not your typical pudendal blocks, but a different locale of the nerve, closer to the exterior of the vagina basically. She said I'm so young, she'd hate to see me have to do another surgery and hoped it could be fixed by a serious of injections into this new location.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
User avatar
Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Hello, New to Site

Post by Violet M »

Pianogal, is there someone in your area who does steroid injections of the dorsal nerve?
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: Hello, New to Site

Post by pianogal »

I am not sure. I can try with my PT's office, and see if they'll try it. (julie sarton, dr. noblett, dr. lane at UCI women's health)
I will try with Dr. Hibner. If not, I hear that Dr. Ali Guermazi at Boston Medical might do this... heard through alipasha on this forum.

although it may just be my vestibulectomy scar, but it's worth a try. also curious about getting my labral hip checked out for tears as my hip clicks often daily on the right side. I heard there's a study going on at the hospital for special surgery in ny.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
Post Reply

Return to “WELCOME CENTER”