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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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Hello Sean @seanivor, there is another discussion on Connect that might be helpful for you.
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Has your doctor recommended any kind of physical therapy to possibly help with the nerve compression?
Hi John, no I haven't been recommended any physical therapy yet anyway, I have written to my pain specialist this weekend , describing my current condition , not sure what the next step is, but I need some treatment and fast that's for sure .
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2 ReactionsSean, I was also thinking that Physical Therapy might help. I do think, though, that you need to take special care in Physical therapy, not to make yourself worse. Have you been to a neurologist? I think you need one. By the way, my husband had that hernia mesh surgery twice, without the slightest problem. My toes utterly curled reading what you are going through from this procedure. Just incredible. Horrific. I have bad nerve problems from disc problems in lumbar spine, and may need surgery in the future. Do you use the 5% lidocaine patches and cbd salves and oils? Both good for pain. Brain storming here, about you. My very best. My heart goes out....Lori Renee
Also Sean, if you head towards surgery, research your surgeon very carefully. Your first one hit some delicate nerves. Really research that surgeon and methodology. Lori Renee
Hi Lori Renee, thank you for your reply, I am actually going to see a good investigative neurologist shortly , I had my battery replaced for my spinal cord stimulator just three weeks ago , so I am just coming around now after that surgery. it is supposed to give me more options and give me better relief so fingers crossed.
Yes I am going to try the 5% lidocaine patches again , I used them back in 2011 or 2012 , something helped me get back on my feet that time , possibly the stimulator, maybe the patches, maybe just time or maybe a combination of things.
I will let you know how I get on with the neurologist , Regards, Sean
Best of luck to you, Sean. Please do let me know how you are doing. You have gone through way too much from something that never should have done any of this. Good luck with the Neuro doc, and if something feels wrong, go to another doc. They are only people. I had to go to two before I was diagnosed with what was causing the neuropathy in my feet. One year of severe pain, but now I have a treatable problem. Every day I feel decently, is an awesome day.....Lori Renee
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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1 ReactionHello @tburkart and welcome to Mayo Clinic Connect. Nerve pain can be incredibly challenging, as you well know. I wanted to bring you into an existing discussion, so you will notice I have moved your post here:
- Neuropathy caused by ilioinguinal nerve entrapment: https://connect.mayoclinic.org/discussion/neuropathy-caused-by-ilioinguinal-nerve-entrapment/
Members such as @lorirenee1 may be able to return and share more with you.
You mentioned seeing a different doctor for your second injection and it now working as well. I wonder if you would prefer to see your first neurologist again for continuity of care, if that is even possible?
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2 ReactionsHi 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?