New Person with Pudendal Nerve Disorder

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.
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: New Person with Pudendal Nerve Disorder

Post by donstore »

Jim,
The following is my take on your questions...... Dr. Potter has developed special software that allows her an advantage in visualizing the pudendal nerve (and other nerves as well, I guess) and entrapments. She uses a 3T MRI which allows her to maximize her visualization of the pelvis. Most TG surgeons decompress the entire nerve regardless of the resut. She is a full professor at Cornell-Weill Medical school in NYC and my doctors at UCSF respected her reputation. If you have good health insurance, all you need is a referal from your doctor. Otherwise it costs $3000 m ore or less. I think Dr. Antolak is a distinct minority opinion among docors who have given any serious thought to PN. Dr. Potter's readings have been verified at surgery (RJR, Athenas Mommy).

Don
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
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: New Person with Pudendal Nerve Disorder

Post by janetm2 »

Jim,
For your third question about entrapment site and surgical approach it seems that depending on where you are entrapped (many people get this info from the Potter MRI ) determines the approach and the surgeon as some areas are only done by certain surgeons.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

Don,

If Hollis Potter can visualize the pudendal nerve entrapment areas as you state, but pudendal surgeons decompress the entire nerve regardless of the results of the MRI, of what use is the MRI? I am quite certain I could get my health insurance to approve such a scan, but why go through the extra expense of getting to New York if the information does not change the surgical course?

Jim
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

Janet,

If for example, only the Alcock's canal area is entrapped, which surgeons would only release that area? Or conversely, if the ligament area is the problem, is there a surgeon that will only decompress that area? As I undersand it, the surgeons I have read about decompress the entire nerve, from the ligaments to the distal portion of Alcock's canal. As I wrote to Don, if the Hollis Potter MRI just showed entrapment in Alcock's canal, is there really a surgeon who would only decompress this area, or would they do the entire nerve pathway?

Respectfully,

Jim
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

Has anyone accessed the Mayo Clinic for pudendal surgery? I live within easy access of the Mayo Clinic in Rochester, MN, but I do not believe they do surgery, only the steroid injections. Anyone know for sure?

JIm
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Violet M
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Re: New Person with Pudendal Nerve Disorder

Post by Violet M »

Jim, Mayo used to have a surgeon who did PNE surgery but he quit doing it before I had my surgery 7 years ago. Dr. Antolak was at Mayo at the time and worked with this surgeon but my understanding is that Mayo would not agree to Dr. A. carrying on the PNE surgery program there so Dr. A opened his own clinic.

The Potter MRI can show scar tissue encasing the nerve and various other abnormalities -- you can read through the MRI/MRN section of the forum to see a lot of her reports and findings. The MRI may help to confirm a diagnosis of PNE and give you more confidence that surgery is the right option for you if you aren't sure you want to try surgery so I think in that regard it is a valuable tool. My own personal thoughts are that while her MRI's may often give helpful information, they may not diagnose certain mechanical problems that are contributing to PNE -- such as pelvic floor tension, misalignments leading to compressions, ligament strains, and joint dysfunctions, etc. If there is clearly scar tissue around the dorsal nerves and your symptoms coincide with a dorsal nerve entrapment you may just want to go for the dorsal nerve surgery rather than the full-blown TG although I think we still need more stats on the dorsal surgery since it's a pretty new procedure.
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.
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

Violet,

I have never heard of the dorsal procedure. Is this just surgery on the clamp area between the two ligaments? Which doctor does this procedure?

Jim
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: New Person with Pudendal Nerve Disorder

Post by janetm2 »

Jim,
I am not the most up to date on what they do in the surgeries, however I think one of or the only dorsal surgeon is Dr. Dellon. That seems to be one of the reasons to find out where the entrapment is located.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Re: New Person with Pudendal Nerve Disorder

Post by carolynm »

Dr. Aszmann in Austria also does the dorsal nerve decompression.
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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Violet M
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Re: New Person with Pudendal Nerve Disorder

Post by Violet M »

konedog4 wrote:Violet,

I have never heard of the dorsal procedure. Is this just surgery on the clamp area between the two ligaments? Which doctor does this procedure?

Jim
Jim, the dorsal nerve surgery is distal to alcock's canal and it only addresses the dorsal branch of the nerve, not the main trunk.

I noticed that Dr. Hibner wrote that if the rectal branch of the nerve is the only branch involved the perineal approach might be the best. Could be another reason to go for the Potter MRI?
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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