PNE Question

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PNE Question

Postby dusty-l » Thu Mar 23, 2017 1:36 am

Hi all,

In 2007 I was diagnosed with PNE and had unilateral surgery in Nantes done by Pr Robert. I used to frequent the Tipnna forum.

After a very difficult recovery I felt pretty good for 3 months, almost free of that excruciating pain. 

I started to get a slight pain on the right when I sat again. 
The pain was not the stabbing and gnawing entrapment pain I experienced prior to surgery.  But with prolonged sitting the burning pain got progressively worse. I started to get those grueling pains coming once again. 

I consulted with Dr. Hibner that offered a redo surgery in 2010. 
The recovery was easier this time but the pudendal pain never got better. I have stopped sitting by and large both because the pain is insufferable and because I feel like the nerve is entrapped again and may get damaged irreversibly.

I have regular pelvic floor physical therapy which helps some but cannot afford it more than once a month.

I am pretty desperate. Should I be assessed again and try for another pudendal surgery?

My quandary is, which doctor?  I am in SoCal.

Thanks for any answers.
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Re: PNE Question

Postby Violet M » Fri Mar 24, 2017 12:57 am

Hi Dusty,

I'm sorry you are still struggling with this. There is a reason your first 2 surgeries weren't successful -- maybe it's because it wasn't the ligaments that were the problem, or maybe you developed scar tissue after surgery, or maybe the nerve is damaged. Possibly you have healed but your brain still has a memory of pain and the nerve signals are continuing to follow the wrong pathways. I can't say for sure what the reason is or what is the right path for you but I'm guessing the ligaments were already dealt with so I'm not sure what would be done in a 3rd surgery. You do have a lot of other options you can try. What are your doctors and PT suggesting?

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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Violet M
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Re: PNE Question

Postby Patty » Fri Mar 24, 2017 9:52 pm

It breaks my heart to read your post. Maybe try a pain clinic and begin talks about a pain pump?
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Re: PNE Question

Postby lismom » Sat Mar 25, 2017 3:31 pm

I feel your, pain, as well. I had surgery almost 5 years ago and the pain has just gotten worse. Nothing seems to help anymore.
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Re: PNE Question

Postby Rob73 » Sat Mar 25, 2017 6:24 pm

Have you already tried medications?
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Re: PNE Question

Postby dusty-l » Wed Apr 12, 2017 2:08 am

Thanks to all for the kind words. My pain started while moving furniture out of my house (I was going through a painful -no pun intended- divorce).

I am in the Kaiser Permanente network in Southern California (Whittier), therefore I don't have a lot of choices. They have a pretty limited pharmacopeia. I was offered Methadone a few years ago. I declined after learning about Methadone addiction. I am on Gabapentin and take an occasional Tramadol.

I have seen Dr. Dellon’s website. He seems to be an accomplished neurosurgeon. He has encouraging testimonials on his site. I am very tempted to go see him. What do you guys think?
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Re: PNE Question

Postby janetm2 » Wed Apr 12, 2017 3:29 am

I have no first hand experience with Dr. Dellon but I would suggest reading the Dr Dellon thread under surgery and/or searching for his name in the box on the top right corner of these forum pages to see what others have experienced. So sorry you have been through so much. I have sent that Dr Dellon does not take any insurance. I do hope you can get some relief in the future.
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr 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 started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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