Male with Symptoms of Pudendal Nerve Problems

PNMLT, EMG, SSEP, and other Nerve function testing.
The different techniques, results and opinions.

Male with Symptoms of Pudendal Nerve Problems

Postby Ron H » Wed Jan 05, 2011 6:03 am

Hello to anyone that can help me. I have all the classic symptoms of Pudendal Nerve Problems and do not know what I need to do to establish that the Pudendal Nerve is really the problem.

Little history of myself. I am a 63 year old male that was diagnosed with interstitial cystitis (IC) in 1992. From then to present I have tried many treatments. My IC has never been constant. Sometime better and sometimes worse. But as of about October 2010 things have changed. I have all the IC symptom but now I have constant 24 hours pain above the pelvis, in crouch, and in the rectum. I never had constant pain all the time. The rectal pain is horrible. If draw up on the rectum muscle it hurts. The most comfortable place to sit in on the toilet. As long as I am standing the pain is not as intense but I have a hard time sitting. The rectal pain increase very quickly.

My symptom are classic pudendal nerve entrapment pains now. Thus far I have had constant pain almost 4 months straight. I am taking tramadol 50 mg (3 times a day) pain medication and linesta sleep. For a short period of time I was on Morphine but the constipation was horrible. I can not make it through the night with pain meds only but also need to linesta (sleep medication). Even after taking linesta I only get between 2 and 4 hours sleep a night. I do not sleep any other time other than night. I also get the tremors all the time another reason for taking linesta. The tremors are also bad. I start to fall off to sleep then I am jerk /tremor back awake. If I did not have the linesta I most like would not get any sleep. As I am typing this I have to support myself by my knees instead of sit because of the pain.

Anyway what is the first step that I should take to find out if I have Pudendal Nerve Problems?

Would I have a PNMLT or a pudendal nerve block? Which has the most pain involved? I have read some about the nerve block but not about PNMLT. How pain are either of them. Some I believe it said that PNMLT only would tell me if I have nerve damage but would not tell me if it was the pudendal nerve. I guess if I find out that I do not have nerve damage then I do not have pudendal nerve entrapment. It is a big question to me. I want to find out what is wrong but I do not want to go through anymore pain that I have too. Please give me some insight if you will?

Which should I have first. What do the doctors who do the surgery generally require before they will perform the operation.

I am really having a hard time of it and I am going to have to make my move but presently I am confused at what I should do next. I live in the Seattle, WA area and I am finding it hard to find a doctor that does pudendal nerve block. I do not ever know where to start to get the PNMLT done. Maybe there are other males out there that are from Seattle area that can give me some information.

Thank you for any help you can give.

Ron
Ron H
 
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Re: Male with Symptoms of Pudendal Nerve Problems

Postby AliPasha1 » Wed Jan 05, 2011 8:27 am

Hi Ron,
EMG/PNMLT isn't a very reliable tool to indicate PNE,although it is helpful.You can start with a 3 Tesla MRI with Dr.
Potter in NYC and then proceed with an appoinment with with Dr. Hibner in Phoenix,Arizona.In the meantime,you can also start PN PT and see if it helps.
Another good point to start would be Dr. Jerome Weiss in SF,California.At the same time you can take an appointment with Stephanie and LizRummer and have a session or two of PT with them as well once you are in SF.

All the best,
Ali
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
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Re: Male with Symptoms of Pudendal Nerve Problems

Postby Violet M » Mon Jan 24, 2011 1:33 am

Ron H wrote: I start to fall off to sleep then I am jerk /tremor back awake. If I did not have the linesta I most like would not get any sleep.


Ron, I really feel for you because I had the exact same problem and it was dreadful not being able to sleep. Clonazepam was a big help but even with that I only slept for a few hours at a time.

As I understand it, the PNMLT only measures the motor function of the nerve so it is not entirely reliable in the diagnosis because the pain can be caused by damage to the sensory nerve fibers.

A nerve block can help in the diagnosis but in rare cases can cause a permanent increase in pain.

There are some PT's in WA who treat people with PN/PNE. http://pudendalhope.org/node/63#WA

You may want to try the least invasive options first.

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.
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Re: Male with Symptoms of Pudendal Nerve Problems

Postby donstore » Mon Jan 24, 2011 8:30 am

Hi Ron,
My best friend was waking up with nerve shocks in the middle of the night and Lyrica helped him a lot. It has helped me with the PN pain as well. It is expensive out of pocket but if your doctor uses the diagnosis code for fibromyalgia, insurance will often pay for it. As Ali said, Dr. Potter MRI is the only imaging test for PNE. The rest is clinical history and diagnostic blocks. Read the post of Dr. Hibner's 2010 paper for full explanation. Good luck.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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Re: Male with Symptoms of Pudendal Nerve Problems

Postby Yashodhara » Tue Mar 22, 2016 11:56 am

Hi Ron,

At this moment I am facing the same symptom as you are, can you let me know if your sleep Jerk (Hypnagogic Jerk) is resloved? I desperately need hep. Anyone here please advice anything other than Anxiety & Anti depressant drugs.
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