Which is the most reliable test for pudental nerve problems?

PNMLT, EMG, SSEP, and other Nerve function testing.
The different techniques, results and opinions.
Krisssy
Posts: 50
Joined: Wed Jun 22, 2011 1:24 am
Location: New York

Which is the most reliable test for pudental nerve problems?

Post by Krisssy »


I have had clitoral pain, arousal disorder, and frequency and urgency for three years. From regular testing (ct scan, MRI, and pelvic sonogram) nothing has shown up. I have the list of North American pudental nerve doctors, and I am trying to figure out which would be the best route to go in diagnosing what is wrong with me. After much research, i am convinced something is wrong with my pudental nerve. I just spoke with my pelvic pain Dr., and we discussed three possible options. One would be an MRI with Dr. Potter. One would be EMG testing with Dr. Conway, and one would be at the institute for nerve medicine at John Hopkins where they would do Dr. Filler's test. I am in a tremendous amt. of pain, and after three years, i am very depressed. i know I need to be proactive, but I am confused. I am willing to travel anywhere in the country to get a diagnosis and get the proper help. As i look at this list of doctors i am overwhelmed and confused. Can anyone give me any suggestions or tell me which route they have gone and gotten bad or good results? thank you for any help you can give me. i had three abdominal surgeries before this started and have an abdomen full of scar tissue. thank you again.
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
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

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

Post by Lernica »

Krisssy,

May I ask what your abdominal surgeries were for?
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

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

Post by nyt »

Go for the MRI with Dr. Potter. Your insurance company should pay for it they won't pay for the MRN with Dr. Filler. My MRI with Dr. Potter's matched my pudendal symptoms almost exactly. As far as pudendal dr.'s go, that is a very personal decision. There is a lot of information on this forum about the different pudendal dr.'s and you will need to do your homework to see if there is one you would like to see. Also, if you go to one of the PN dr.'s and you don't feel like they are a good match for you then you can always go to someone else. If your current pelvic pain specialist thinks you have PN does this physician feel like they can manage your pain with medication and/or PT?
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

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

Post by nyt »

Go for the MRI with Dr. Potter. Your insurance company should pay for it they won't pay for the MRN with Dr. Filler. My MRI with Dr. Potter's matched my pudendal symptoms almost exactly. As far as pudendal dr.'s go, that is a very personal decision. There is a lot of information on this forum about the different pudendal dr.'s and you will need to do your homework to see if there is one you would like to see. Also, if you go to one of the PN dr.'s and you don't feel like they are a good match for you then you can always go to someone else. If your current pelvic pain specialist thinks you have PN does this physician feel like they can manage your pain with medication and/or PT?
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

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

Post by Karyn »

Hi Krissy,
Welcome to HOPE! I'm sorry for all the surgeries you've already had to undergo and that you're still in so much pain.
I agree with NYT. Please try to get a script for a 3T MRI with Dr. Potter in NY!
Wishing you the best ....
Warm 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.
Krisssy
Posts: 50
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 »

Lernica wrote:Krisssy,

May I ask what your abdominal surgeries were for?

In 2004, I had a resection done to correct a prolapsed rectum. In 2005, my scar tissue had wrapped around my colon causing an obstruction and an emergency surgery. The same thing happened again in 2007. In 2008, my pain began, and it has continued for 3 years. 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
Krisssy
Posts: 50
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 »

nyt wrote:Go for the MRI with Dr. Potter. Your insurance company should pay for it they won't pay for the MRN with Dr. Filler. My MRI with Dr. Potter's matched my pudendal symptoms almost exactly. As far as pudendal dr.'s go, that is a very personal decision. There is a lot of information on this forum about the different pudendal dr.'s and you will need to do your homework to see if there is one you would like to see. Also, if you go to one of the PN dr.'s and you don't feel like they are a good match for you then you can always go to someone else. If your current pelvic pain specialist thinks you have PN does this physician feel like they can manage your pain with medication and/or PT?

My pelvic painDr. thinks he can treat me with medications, unguided nerve blocks,bladder installations for IC and physical therapy. The medications are not working, and physical therapy and different medications have not worked in the past three years. I have researched my condition and found that I have the symptoms of PN especially with the bad cliteral pain and the arousal disorder which was made worse with physical therapy. So I am going to get a prescrition for /Dr. Potter this week. It is easy for me as I live in NY. Then I intend to make appointments with Dr.s Conway, Hibner and /Renney which I should have done a long time ago. 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
User avatar
Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

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

Post by Violet M »

Kris, you could go ahead and make appointments with PN docs but the results of your MRI with Dr. Potter may help you decide which doc you want to see. For instance if the MRI shows you have scar tissue in the area of the dorsal clitoral nerve you may want to consider Dr. Dellon because he uses a different approach for that nerve.

Violet
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.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

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

Post by Lernica »

Krisssy wrote:
In 2004, I had a resection done to correct a prolapsed rectum. In 2005, my scar tissue had wrapped around my colon causing an obstruction and an emergency surgery. The same thing happened again in 2007. In 2008, my pain began, and it has continued for 3 years. Krisssy
My goodness, Krisssy, what an ordeal you've been through! I hope you have better days ahead.

I've had multiple pelvic surgeries for endometriosis, culminating in a hysterectomy last year. And here we are now, after all those surgeries, no better off. Very frustrating.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Krisssy
Posts: 50
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 »


The Potter MRI showed scar tissue in the dorsal pudental nerve leading to the clitoris, and that is exactly where the pain us. Unfortunately, I can't afford Dr. Dillon. Do you think there is any chance that Dr. Hibner or Conway could help me? 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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