Pain 2 years after surgery - has anyone experienced this?

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Ronald
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Joined: Sat Sep 21, 2013 3:20 pm

Pain 2 years after surgery - has anyone experienced this?

Post by Ronald »

I had sugery 2 years ago in France to relieve a long term severe pudenal nerve entrapment. The pain did abait a little after the first year and I no longer suffered from constipation. Recently however I seem to be be getting pelvic pain which I never had before. The most worrying is for the first few months after the operation I had little pain, but after 5 or 6 months the burning started in both thighs, buttocks, toes and shin area. I do walk daily but I see no further improvement despite physio etc. I would like to hear other people's experiences post op - to see what is "normal" and what is no 2 years on as I fear I am going back the way and now have the burning.
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Violet M
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Re: Pain 2 years after surgery - has anyone experienced this

Post by Violet M »

Ronald, there are people who have posted who were better for awhile after surgery but then got worse again. I'm sorry to hear this is happening to you. Not sure where you live but maybe a 3T MRI using Dr. Potter's protocol could give you some info on what is going on.

Violet
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.
Ray P.
Posts: 248
Joined: Mon Sep 20, 2010 5:22 pm

Re: Pain 2 years after surgery - has anyone experienced this

Post by Ray P. »

Hi
After my first surgery in France, I never got better just worse.

Ray
RJR
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Joined: Mon Nov 15, 2010 11:26 pm
Location: Northern VA

Re: Pain 2 years after surgery - has anyone experienced this

Post by RJR »

Hello,
It might be something different. Agree with Violet about MRI. Your symptoms suggest possible stenosis or pinched spinal nerve.
Good luck,
RJR
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. Surgery video = http://www.youtube.com/watch?v=6FDwana6SQU

Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
helen1000
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Joined: Fri Jul 20, 2012 7:07 pm
Location: Michigan

Re: Pain 2 years after surgery - has anyone experienced this

Post by helen1000 »

Hello,

I agree with Violet. You might try Potter MRI. Or other tests and doctor evaluations. Maybe you have more than one problem.

Potter MRI.
Go to Orthopedic doctor that is working on labral tears and ask to evaluate your hips. If he suggests do MRI arthrogram do it. Or you can ask Dr. Potter do Tesla MRIs on your hips. Regular MRI with contrast may not find it.
Go to physiatrist that is specializing in misalignment and ask to evaluate your pelvis. Maybe you need PT to realign you pelvic bones.
Visit Dr. Conway and ask for EMG of your pelvic nerves. Maybe you have other nerves involved.
Some people have trunk of the nerve trapped rather than Alacok canal.
It is Dr. Israel Chambi in CA.
Some have Tarlov cyst.
Some people form scar tissue easily. Did you have other operations and did you form too much scar tissue?

There are many problem with same symptoms.

Maybe other members of this forum can think of other actions.

Good luck and I am so sorry that you have to suffer,

Helen
8 nerve blocks rel 6 w.Met Dr. Peters,Dr. Antolack.Dr. Peters pacemaker,Dr Antolack TG operation.Maigne s.Internal PT at Dr Peters Nothing.PFCN block rel 6 w. PFCN RFA.Nothing.SI joint RFA.Nothing.Left scar tissue removal.Good.SIJD. PT of SI joint ME, and Prolo of SI and PS.Lumbar spine facets turned left. ME. T10-12 facets too wide.T10 turned left.ME and Prolo.Labral tears in left hip, spurs.Will have operation at 09/18/13,Met with Dr Conway.EMG shows left PN problem.Good impression of Dr C.
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Karyn
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Location: Lowell, MA

Re: Pain 2 years after surgery - has anyone experienced this

Post by Karyn »

Hi Ronald,
While some of the symptoms you're describing may be the PN, the others are not. The PN does not affect or innervate the thighs, calves or toes/feet.
RJR's suggestion of some type of stenosis or sacral nerve issue seems more likely.
I'm truly sorry you're having such a hard time. Unfortunately, getting to the root cause of our problem is like peeling the layers off of an onion. It's a very time consuming and exhausting problem.
I wish you the best with your quest for answers. Please let us know if there's anything we can do to help.
Kind 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.
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