Where are the post-ops?

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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
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Re: Where are the post-ops?

Post by A's Mommy »

Hi all,

Thanks for thinking of me. It's been a rough road. However, I feel that I am ( was, whatever) entrapped in the most difficult spot to address: the distal Alcock's canal and the perineal branches. Dr. Hibner found entrapment at the proximal (posterior) end of the Alcock's canal during my TG surgery last November. That pulling and stretching sensation there is gone. The pain has moved more forward (anterior) and I believe that he did his best to reach all the way to the distal Alcock's canal. However, who knows what happened or what/where my entrapments were in the first place. Lyrica did a great job at masking my pain, but the side effects were too much for me, and honestly, my goal is to be med-free and just fixed by surgery. Right now I am continuing to trust that Dr. Hibner can fully fix me, and for now, it is a waiting game. I trust Dr. Hibner, and he is a kind and careful surgeon.

I know that some are going to Dellon or flying to Austria to see Aszmann and I have considered the latter. However, I really believe in the Neurawrap, and so I am continuing to work with the surgeon that has already operated on me once and has done two other procedures on me (Botox, nerve block).

Do not let my post discourage you. Many are being helped and cured by the traditional TG surgery. The distal Alcock's and the tiny, tiny perineal branches are so specific. Remember, everyone had their own "injury" and mine just happened to be my sweet daughter's skull growing against that area. God has me on the journey for a reason --- but I pray it ends SOON.

I'd like to leave the PNE cult... LOL. Wouldn't we all?? Love to you all!!!

A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Where are the post-ops?

Post by nyt »

Glad to hear from you. Hope you are feeling improvement since your last visit to Dr. Hibner. Thoughts and prayers sent your way.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Re: Where are the post-ops?

Post by carolynm »

A's Mommy,

I think the same thing.....what lesson am I supposed to be learning from this? I haven't answered the question yet. My thoughts are with you.

cari
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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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Where are the post-ops?

Post by Karyn »

Hi AM,
I'm sorry to hear you're still in a lot of pain. I sincerely hope you find the relief you need soon. Just a couple of comments about those "tiny nerve branches" and neurowrap:
A's Mommy wrote:the most difficult spot to address: the distal Alcock's canal and the perineal branches.
A's Mommy wrote:The distal Alcock's and the tiny, tiny perineal branches are so specific
A's Mommy wrote:I know that some are going to Dellon or flying to Austria to see Aszmann and I have considered the latter. However, I really believe in the Neurawrap
Neurowrap can be used on the main trunk of the nerve and around the ST ligaments. It's purpose is to help prevent surgical scarring. It completely dissolves within 2 weeks. To the best of my knowledge, it can not be used on those tiny perineal branches because they're too small. Did Dr. Hibner tell you he could wrap the nerves in that area? I stand to be corrected if he did tell you he could, and please share his confirmation with us.
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
shljk
Posts: 27
Joined: Wed Feb 02, 2011 4:18 am

Re: Where are the post-ops?

Post by shljk »

I had my left sided PN surgery on Monday...finally! Dr. Hibner found scar tissue encasing a long stretch of the nerve where the two ligaments meet I guess (not 100% sure on the anatomy there), and he's very optimistic for me. So far I'm not having any PN pain, just pain at the incision site.

Updates on surgery with Dr. Hibner: apparently he's not using cadaver tissue to repair the ligament unless necessary anymore. He repaired mine without using it. Also he's using a liquid form of the nerve wrap and placing it in areas where he can't put the actual wrap.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Where are the post-ops?

Post by helenlegs 11 »

shljk wrote:I had my left sided PN surgery on Monday...finally! So far I'm not having any PN pain, just pain at the incision site.
That's such good news.
shljk wrote: Updates on surgery with Dr. Hibner: apparently he's not using cadaver tissue to repair the ligament unless necessary anymore. He repaired mine without using it. Also he's using a liquid form of the nerve wrap and placing it in areas where he can't put the actual wrap.
Thanks for that shljk
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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