Neuropathy caused by ilioinguinal nerve entrapment

Posted by seanivor @seanivor, Mar 9, 2019

Hi my name is Sean, I have been struggling with Neuropathy, Small fiber Neuropathy and Ilioinguinal nerve entrapment / compression since an inguinal hernia mesh repair in 2009 .
I was pretty much incapacitated until October 2012 when I had a spinal cord stimulator installed, with time It helped me get back to work after almost two and a half years.
Unfortunately I had a set back a few months ago and am back to square one again.
The unusual thing is that I can get up in the morning feeling perfect, but once I get up and start walking and standing and putting weight on my groin & pelvis area, I start to feel soreness on that same specific point on my left groin, like a nerve is being compressed or pinched.
It is obviously inflammation at this point, I sometimes use an ice pack inside my pants which keeps the inflammation down and keeps me on my feet longer.
With continued walking and standing I get coldness and numbness down my left leg, (I think the small Fiber Neuropathy diagnosis of 2012 takes effect) with a very painful shin and leg, the feeling becomes debilitating with nausea and headache and a general feeling of unwellness.
Bed and rest are the only antidote to date, and the cycle begins all over again.
I have a very short window, maybe an hour or less on my feet, before the symptoms kick in.
I can’t wear a pair of denims with the past few weeks due to the unease and un-comfort caused.
This problem is really starting to get me down, I have no quality of life with these past few months, it is so frustrating not being able to work, go for a walk, I can’t do anything really and I’m beginning to get desperate.
I believe my problem is compression on either the ilioinguinal, genitofemoral or Obturator nerve in this area causing the inflammation and contributory problems.
I have not had any success with nerve blocks to date, I now have to look at surgery for long-term relief, I would consider neuro ablative techniques such as chemical neurolysis, cryoablation, and pulsed radio frequency (PRFL) ablation, what are your thoughts?
My one saving grace is that I was very good with the help of the stimulator and being careful from March 2013 up to my most recent mishap in November 2018, but I didn’t have this debilitating soreness and repetitive inflammation on my left groin.
I am currently doing myofascial release to free tight fascial tissue, not sure if its going to be any benefit.
This description best describes my symptoms
Obturator nerve entrapment
The main complaints in obturator nerve entrapment include difficulty with ambulation and the development of an unstable leg. In an anterior branch entrapment, symptoms can consist of exercise-related pain or groin pain. The patient may describe a deep ache in the region of the adductor origin at the pubic bone that increases with exercise; the pain may radiate down the medial aspect of the thigh toward the knee. An athlete’s ability to jump may be reduced. The weakness in these patients usually worsens with exercise.

Thank you for reading, Sean 

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@johnbishop

Hi @sda, Welcome to Connect. It seems like @seanivor is no longer following Connect. I think @tburkart and @lorirenee1 may have some experience to share with you on ilioinguinal nerve entrapment. Are you currently undergoing any treatments for your symptoms?

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No I am not. I have been debilitating battling debilitating groin pain that has got worse during the last 5 years. I have had to retire from work and I am only able to be on my feet for short periods of time. I have had numerous tests. Last December I had a neurectomy of my LCFN nerve and this summer an iliguinal hernia operation. Both have not eased my symptoms'. The surgeon who performed the LCFN surgery noted the large size of the ilioinguinal nerve. I am currently waiting to have a nerve block of that nerve. Feeling very frustrated. I am looking for ideas that may help. Like Sean I have pain that radiates into my left foot, but appears not related to my back.

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@tburkart

Anyone have ilioinguinal nerve pain? After my second injection, I've gotten very little pain relief.
A couple years ago I thought I had reinjured my hernia from 25 years ago. My back and groin hurt. CT scan found no hernia. Anyway I had severe back pain.After a couple steroid shots in my back and much PT, the back pain subsided somewhat. The next year (now) I've been having groin pain. I had an injection for the ilioinguinal nerve. The first injection worked for about six months. The second one not so much, but it was a different Dr.( Very difficult to get appointments around here. They're usually weeks if not months out) Anyway I don't know what to do anymore. Gonna try a chiropractor (again). Any suggestions? There's much more to the story...

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Suffering from ilioinguinal nerve pain wondering what worked for you

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@johnbishop

Hi @sda, Welcome to Connect. It seems like @seanivor is no longer following Connect. I think @tburkart and @lorirenee1 may have some experience to share with you on ilioinguinal nerve entrapment. Are you currently undergoing any treatments for your symptoms?

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Is there any way to try and contact Sean? I am dealing with the same unique symptons. I am wondering about the possibility of you giving him my personal email. Any help would be appreciated.
Thanks Steve

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@sda

Is there any way to try and contact Sean? I am dealing with the same unique symptons. I am wondering about the possibility of you giving him my personal email. Any help would be appreciated.
Thanks Steve

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Hi Steve @sda, We don't have access to members email addresses and since @seanivor has not posted or been active since 2020 we have no way to contact him.

I'm wondering if you have common symptoms with @tburkart or @lorirenee1 who are active members and may be able to share experiences with you? Hopefully they can share more with you.

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