Which is the most reliable test for pudental nerve problems?

PNMLT, EMG, SSEP, and other Nerve function testing.
The different techniques, results and opinions.
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Violet M
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Re: Which is the most reliable test for pudental nerve probl

Post by Violet M »

Hibner was going to start dorsal nerve surgeries but I'm not sure if he has yet.
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.
Torbjorn
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Joined: Sun Jul 24, 2011 1:02 pm

Re: Which is the most reliable test for pudental nerve probl

Post by Torbjorn »

hi had ic for 13 years. I have chronic pain. tries meds instills. I have had an MRI but no one mentioned the PUdendal nerve. is this a special mri, do they have to put dye in. My doc says there is no MRI that can tell if the PN is damaged as it lies to deep. MY email is haprestegard@yahoo.com. the reason I put this in ,is im so sick sometimes I cant even write or read.IM also chronically affected by foods, smells,THis brings on the pain. Is that a PN symptom or only IC. Thanks God Bless Helen
Krisssy
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Joined: Wed Jun 22, 2011 1:24 am
Location: New York

Re: Which is the most reliable test for pudental nerve probl

Post by Krisssy »


Call Dr. Hollis Potter at the Hospital for Special Surgery in NY. No dye is used. Check out the part of this site which lists physicians, and it will tell you exactly how to go about getting an appointment with her including her phone number and what the prescription must say.

surgery 2004 for prolapsed rectum
surgery 2005 for obstruction due to abdominal scar tissue
surgery 2007 for obstruction due to abdominal scar tissue
2008-clitoral pain, arousal disorder, frequent urination began
2011-pelvic pain specialist-Dr. Robert Echenberg
MRI-Dr. Potter 8/11 showing scar formation of pudental nerve
appt. Dr. Conway-10/11
appt. for guided sedated nerve block with Dr. Quesada-10/11
appt. with Dr. Hibner-1/12
wendy7
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Location: Rhode Island

Re: Which is the most reliable test for pudental nerve probl

Post by wendy7 »

Wow, it has been such a long time since I have been around. I haven't even heard of Dr. Dellon. Violet, what does Dr. Dellon do, that is different from the other PN docs, that helps with the dorsal nerve of the clitoris?

Thanks,
Wendy
Unlilateral Surgery 9/27/07 - Dr. Conway
Redo Unlilateral Surgery 10/15/10 - With Dr. Hibner AND Dr. Conway
Results - Fantastic!
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Violet M
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Re: Which is the most reliable test for pudental nerve probl

Post by Violet M »

Wendy, great to hear from you! Actually, I'm not an expert on Dr. Dellon but I know he does an anterior approach to release the dorsal nerve and he's also doing release of the posterior femoral cutaneous nerve. Some people are having great success with this -- others not so much. But it's still early to draw any conclusions.
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.
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quilter
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Re: Which is the most reliable test for pudental nerve probl

Post by quilter »

Is there anywhere in California to get a test of the same quality as Dr. Potter's? It's extremely frustrating that there are so few places to go for answers and all require so much time, travel, and expense. Not to mention more physical, emotional & financial pain.
Acute left vag/rectal pain 1999 lowering into chair. Dx 2006 with PNE/VV by PTs, Dr. Garcia, Weiss, Hibner. Many shots. PNMLT: left PN barely fuctional. Left TIG by Dr. Hibner 2007 (ST lig). 75% improved 1 year postop, slow decline. Pelvic floor Botox 2010. Left sacral SCS 2011 after good trial; removed 2012 due to NEW left S2 & rectal pain, bowel freq. Re-do left TIG by Dr. H & 5-day ketamine 2013; 1-1/2 years postop 70% improved. New post-SCS Sx are worse than PN Sx.
Krisssy
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Joined: Wed Jun 22, 2011 1:24 am
Location: New York

Re: Which is the most reliable test for pudental nerve probl

Post by Krisssy »

I just returned from an appointment with Dr. Conway. When he saw my Potter MRI, which tells of lots of scar tissue on the pudental nerve, he said that this would only mean anything to him if research was done where people without pain had the same MRIs and were compared to the people in pain. He believes that the people without any pain may show the same scar tissue as the people in pain. So to make a long story short, my Potter MRI meant nothing to him. Krisssy

surgery 2004 for prolapsed rectum
surgery 2005 for obstruction due to abdominal scar tissue
surgery 2007 for obstruction due to abdominal scar tissue
2008-clitoral pain, arousal disorder, frequent urination began
2011-pelvic pain specialist-Dr. Robert Echenberg
MRI-Dr. Potter 8/11 showing scar formation of pudental nerve
appt. Dr. Conway-10/11
appt. for guided sedated nerve block with Dr. Quesada-10/11
appt. with Dr. Hibner-1/12
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StarGazer
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Joined: Sat Nov 26, 2011 6:55 pm

Re: Which is the most reliable test for pudental nerve probl

Post by StarGazer »

Krisssy wrote:I just returned from an appointment with Dr. Conway. When he saw my Potter MRI, which tells of lots of scar tissue on the pudental nerve, he said that this would only mean anything to him if research was done where people without pain had the same MRIs and were compared to the people in pain. He believes that the people without any pain may show the same scar tissue as the people in pain. So to make a long story short, my Potter MRI meant nothing to him. Krisssy
I would like to make an appointment with Dr Potter for an MRI, but am a little worried about where to go from there to see a specialist/surgeon, when I read what Krissy has written above about the MRI seemingly not being acceptable to Dr Conway, as an example. Are there others who do not accept Dr Potter's MRI? I am happy to travel anywhere in the USA or overseas for that matter, but would like to have an idea of who to make an appointment with after having the MRI - or while waiting to have it.

I have been in near constant pain for nearly two years, and just want to find a solution and be rid of it all. :x :D
shana
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Joined: Sun Mar 03, 2013 6:24 am

Re: Which is the most reliable test for pudental nerve probl

Post by shana »

I know this is an old thread but mayb I can get some help.

According to what I've ready here it seems everyone is saying the potter MRI can be really helpful. I'm seeing Conway in July my question is should I get a potter MRI bfr I see him? Wld that b helpful with a diagnosis and/or treatment plan. I'm currently not treating w/ any pelvic pain specialist so I'm not sure who I can get to write the script. Does anyone know if Conway wld write a script fr potter MRI bfr I see him? I've wanted and thought of getting it done in the past but I never had a dr who can write me a script...

Shana
'08 diagnosed with vulvar vestibulitis
'09 vestibulectomy-Dr. Goldstein-failed
'11 right labral repair and release-Dr. Coleman
2/10-8/12 severe depression, minimal dr appointmen
4 different physical therapists '08-'12 no improvement whatsoever
'13 pudendal nerve blocks-Dr. Chapman
More PT
Dr. Conway officially diagnosed PN/PNE 7/13
9/13 Bilateral hip repair Dr. Coleman
10/13-5/14 Major Depression, no dr appointments
More PT
6/14 Dr. Hibner confirmed diagnosis
Looking for help..hoping for answers
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Karyn
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Location: Lowell, MA

Re: Which is the most reliable test for pudental nerve probl

Post by Karyn »

Hi Shana,
It probably would be helpful to have the MRI before seeing Dr. Conway, but I don't know if you have time for that, now. I've heard it can take up to a few months to get an appointment, now. Only way to find out for sure is to give HSS a call. I'm pretty sure he wouldn't write you a script without seeing him first. Is this something your PCP could do? I realize you're not under the care of a pelvic pain specialist yet, but what about a physiatrist or PM doc?
I can't comment on Krissy's post, but I do know that Dr. Conway works closely with Dr. Potter on behalf of his patients.
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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