Hello everyone,
My turn now I suppose
Never posted before but i have PM'd a few on this forum and was impressed and grateful fur the quick responses i received from those i reached out to.
I am having surgery with Dr HIbner this coming Monday, May 9, after suffering with the classic PNE (no penile, mainly south of there / sitting pain) symptoms for nearly a year. I was diagnosed by Dr Filler in October 2010 and after an MRN, 4 'image guided injections' (somewhere in between i realized Filler was NOT going to be the one i would let operate on me, agreeing with all the things i have read about him on this forum - seems very smart, probably is, but doesn't convince me.) The injections were bilateral (Filler said my prob was bilateral - i think its more right sided than anything), two in each Pirifiormis, 2 in each Obturator. The injections provided me with complete numbness/relief from regular symptoms for about 24-36 hours.
As im sure has happened with many, before long you run into Dr Hibner's name and at the moment he seems like the best option for me.
The main reasons I decided to pull the trigger now as opposed to almost a year down the road (next avail surgery date is Feb 2012)is that I am relatively young (under 30), hopefully can have a positive recovery and more importantly, I haven't had the condition for too long (under a year), in fact, I asked Dr Hibner if he had ever operated on anyone who has had the PNE symptoms as short of a time as I have an he said no. Ever since I began feeling the symptoms, I have aggressively and diligently perused a 'cure' - I basically did my work-up between july 2010 and now ( I also did PT for a couple months with little to no results) and now and the oportunity to have the surgery with Dr Hibner came up. At this moment in time, if i pass it up Im afraid I could be in worse shape a year or so down the road (i work a desk job, which makes me miserable, pain levels rise to 10 almost on a regular basis unless i'm drugged up with opiates + lyrica)
I also have the benefit of having medical insurance at the moment + disability insurance, which im not sure i will have in a year...this condition has made working quite tough, as all of you understand.
I'll post updates bi-weekly
feel free to ask questions
Surgery May 9*
Surgery May 9*
Last edited by nervyjoe on Sun May 08, 2011 8:19 am, edited 1 time in total.
Re: Surgery May 9*
I pray you have a safe surgery and an easy recovery. You are blessed to get surgery so soon. Missy
Re: Surgery May 9*
I appreciate that very much, thank you missy 
Re: Surgery May 9*
Wow, you do work fast, NervyJoe! I too wish you all the best with your surgery and look forward to your updates. Do you have to travel far?
Will be thinking of you on Monday.
Warm regards,
Lernica
Will be thinking of you on Monday.
Warm regards,
Lernica
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
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TracyB7777
- Posts: 196
- Joined: Mon Sep 27, 2010 3:42 am
- Location: Vail, Arizona
Re: Surgery May 9*
Oh good luck!! I do hope this works for you!!
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
Re: Surgery May 9*
Hi Nervy Joe,
I wish you all the best in your surgery with Dr. Hibner.I will keep you in my prayers.
Kind Regards,
Ali
I wish you all the best in your surgery with Dr. Hibner.I will keep you in my prayers.
Kind Regards,
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
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
Re: Surgery May 9*
Best wishes to you, nervy. Keep us posted on your road back from all this.
RR
RR
Last edited by RJR on Mon May 09, 2011 2:16 am, edited 1 time in total.
Cyclist till perineal pain onset R side (Apr'08). Dx with PN (Aug'09). Lyrica gave 30% pain reduction. Potter MRI (Oct'10) validated at surgery with Dr Hibner (Nov'10) - found nerve attached to scarred STL. Now sitting 10 hrs/day vs 1 hr/day pre-op. Occasional MRI-guided steroid injections by Dr. Jan Fritz at Johns Hopkins. Surgery video = http://www.youtube.com/watch?v=6FDwana6SQU
Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
Re: Surgery May 9*
Hi Nervyjoe,
I too wish you all the BEST with your surgery next Monday ! M
I too wish you all the BEST with your surgery next Monday ! M
Symptom started 10/2010,sitting pain started 02/20/11. 1st injection 3/25/11. PT started 03/29/11. 2nd injection august,2011
Re: Surgery May 9*
Good Luck. Thanks for posting. Let us know how you're doing.
Best Wishes,
Don
Best Wishes,
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
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
Re: Surgery May 9*
Thanks to everyone for their support! it's truly appreciated and it certainly makes a difference - i'll get back to you all as soon as possible.