hello, after 2 pudendal surgeries, looking to help others

[blightcp]

Hi, my name is Carl and i have been dealing with acute bilateral pudendal nerve entrapment for over 6 years. I have had 2 seperate surguries in the past two years.

I willl apppologize ahead of time for my spelling it is difficult for me to type in bed as i use the computer mostly in bed.

I'll start by describing my suregon:

Both of my surgeries were done by Dr. Mark Conway in Nashua NH.Dr. conway is an OBGYN specialising in pudendal nerve, he typically does 2-4 of these surgeries a week, he told me he has performed hundredes of pudendal surgeries. If you are a man do not worry the office deals with men all the time and his staff is extreamly curteous. In four years i have never been asked why a guy was calling the office.

Dr. Conway performed two types of pudendal surgery on me, the first in 2010 was transperineal, and the second was transgluteal, in this 2 year time frame he started performing transgluteal surgeries. He works with a local Pain clinic and physical therapy all of these people deal with pudendal nerve issues and understand what it is we go through.

If you are not in physical therapy and doing both internal and external work on the nerve i would highly recommend it.

The transperineal was successfull on thre right side and i have no noticable symptoms on the right side. The left side improved but never recovered substancially. I am an engineer by trade and sitting was the primary cause of the PNE.
I made modifications to both work and home. I have a laptop on an articulated arm and a lazy-boy for a chair at work. I have made many other modifications that i would be willinf to share if anyone in interested.

This May Dr. Conway performed the transgluteial on theleft side, he found that the neve had found its way into a fold of the ligament, he freed the nerve from the ligament and the diffrence was imediate.

Today I am still dealing with the reovery of a nerve being entrapped for 4 years, i am hoping to get back to work in a few weeks.

I have used the following types of treatments over the years.

Tradtional Painkilers (dillauded to hydrocodone), Rx from Dr Conway after surgery transitioning to PCP now
Topical Ointments from Snyder Center of Pain Pharmacology, Rx from Pain Clinic
Physical Therapy both internal and external
Pudenedal Nerve Blocks
Antidepressants at the pain managment level not for depression
TENS, i just got this still trying it out.

Accupuncture is on my "to do" list after the TENS.

I am here more as resource after battling this for 6 years i know that if you are reading this than you undersand how debilitating and emotionaly disrupting this condition can be.

[janetm2]

Welcome Carl,
Thanks for passing along info on many topics! Glad you are getting some relief after 6 years and agree this is a tough condition but having all the people and info on the forum brings everyone forward. Take Care,
Janet

[Violet M]

Hi Carl,

We have a few other engineers around here. Sounds like you have been through a pretty tough battle but you are finally winning! Thanks for posting your story and sharing info.

Violet

[deBBieW]

Hello Carl,
How wonderful of you to share all this information. It's so helpful to hear these types of details, good, bad or otherwise.

Best of luck with your therapies, and I hope you get back to work as planned.

Debbie

[Karyn]

Hi Carl,
I'm a patient of Dr. Conways, too. I wish you the very best with your recovery!
Kind regards,
Karyn

[judy c]

Thanks for posting your story Carl. It sure seems nice to hear about someone having good results. Hope you continue to recover nicely and can get on with a normal life.

Karyn, did you have good results with this Dr. also?

[Karyn]

Hey, Judy!
How are you doing these days? Yes, I had very good results from my surgeries with Dr. Conway. Still lots of other things to address, though.

[blightcp]

I know i have been posting alot and i think i should say that i live 20 min from Dr. Conway, and his PT group that trained in CA is only 10min from my house. I'm an engineer by trade, and over the 3 years i have been with PT i have kind of tured into a ginuea pig, we have tried iontophoresis, laser infrared, massage, internal work, KT tape, working in the pool and others. I have a very professional realtionship with the staff and I am open to trying new things if one does not work. We are trying very hard to figure out what is causing the "sitting curse" that so many of us have.

I hope i don't come off as a "know it all" I just have a real motivation to try to figure this out, as an engineer i provide great feedback to the PT group as accurate as i can.

Thanks

[helenlegs 11]

Thanks for the knowledge
Because this problem is a steep learning curve we need as much as poss, keep it coming. Such a shame that it is a steep learning curve for much of the medical profession too but thankfully the likes of Dr Conway exist.
Very glad to hear your tale as I am coming up to 4 1/2 years with no resolution with conservative therapies. I did get botox once which lasted rather well but I'm in the UK and my referral back to Dr Greenslade has been denied so I am snookered it seems, unless we sell the house and pay for an op.
If a miracle does happen, at least I know there can be a recovery, even after a good while with PN.
I would stage a sit in at my local hospital but how long will that last!!
take care,
Helen