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Neuropathy caused by ilioinguinal nerve entrapment
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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Wow. You've been through a lot. I'm so glad you're on your way to being pain free. I'm going to start with the nerve block but the anesthesiologist said if that doesn't work we might look at burning the nerve ends. I'm not sure that sounds good but I'll research it when the time comes.
Terri, if the block works, it will prove the location of the pain. The injection includes a numbing agent (lidocaine or similar) and a steroid. The numbing agent will wear off after about 6 hours. The steroid should prevent inflammation, hopefully preventing the impingemet on the nerve. Sometimes a body reacts to the steroid with a flare of inflammation. So it is really the first six hours that certifies the pain's origin. Relief from the steroid is sometimes only 3 months. Radiofrequency ablation is a longer term solution targeting only the pain nerve. Eventually the nerve can regenerate. I've been told that it always regenerates.
Do you have any treatments to recommend for scoliosis?
Dear Gently,
Thanks for the helpful information.
I did not know I had scoliosis until I was in my 60s and asked my doctor if my body is crooked because my clothes are always off-center. She said, yes, you have scoliosis.
I did physical therapy, rolfing, a few Alexander lessons, a tilt table, and a few sessions with a physical therapist in Massachusetts (I live in Maine) who was specially trained in the Schroth method, specifically for scoliosis. If I had began any of them earlier, I wouldn't be where I am now. If I had known much earlier I would have been willing try try surgery. Many options are too late at age 87.
I did some Schroths without gain. What really helps me is chiropractic. You might try it just for the fist visit which is usually mechanical analysis. I have the sacroiliac joint that wants to move out of position because of the rotational aspect of the scoliosis. That makes one leg shorter creating leg pain. The adjust the joint and I feel great for a couple of days, then I return for another adjustment.
The relief from massage is more temporary. I'm tempted to try rolfing.
My very best friend my Mom got relief from radiofrequency for over a year. They sometimes miss the nerve, though
Terry
Hi Sean I have the same symptoms' as you. I have been dealing with the for over 5 years and now am unable to work and do the things I love. I am wondering what you have done since your last post in 2019 and how you are doing now.
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?
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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2 ReactionsSuffering from ilioinguinal nerve pain wondering what worked for you
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
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.