ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Posted by leet3415 @leet3415, Mar 28, 2019

Hi. Quick back story. In Nov 2018 I had sharp pain in the top middle of my abdomen right below my sternum. Pain level 10 of 10. They thought it was my gallbladder, had it removed. Still had pain. multiple ER visits, hospitalized 2-3 times for a week each, 20 plus doctor appointments, over 100K spent in medical costs billed to my insurance.
As a last resort, went to Mayo and was diagnosed in under 30 minutes.

In January 2019 had my first trigger point injection, just had my 2nd injection March 2019. Still in a lot of pain. Taking gabapentin as well. **Has anyone else been diagnosed with this AND what are the symptoms & treatments you are receiving? Are you finding any relief?**

Interested in more discussions like this? Go to the Chronic Pain Support Group.

quasii | @quasii | Apr 2, 2024

Does anyone knows this: ACNES (Anterior Cutaneous Nerve Entrapment?

Colleen Young, Connect Director | @colleenyoung | Apr 2, 2024

In reply to @quasii "Does anyone knows this: ACNES (Anterior Cutaneous Nerve Entrapment?" + (show)

Welcome, @quasii. I moved your post to this existing discussion so that you can read previous posts and connect with other members like you. See:
- ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome: https://connect.mayoclinic.org/discussion/acnes-abdominal-cutaneous-nerve-entrapment-syndrome/

Have you been recently diagnosed with ACNES? What led to your diagnosis?

naadia | @naadia | Mar 12 1:28am

I did all of these same things. I’m now pursuing a surgical solution.

naadia | @naadia | Mar 12 1:33am

In reply to @vika77 "Aching, pressing, burning, shooting? At what moments? I am diagnosed with ACNES, but they say that..." + (show)

I’ve always had a hard time really describing my pain with this but I feel confident that ACNES is it. It’s a diagnosis of omission. You have to figure out what it’s NOT before you figure out what it actually IS.
Typically my pain is daily. Worse in the evening and at night. It sits just below my ribs on the right side. If I stand next to the corner of my kitchen counter I can get some relief by pushing the corner into my belly. It feels deep but I can never quite pinpoint it, even though it affects such a small area. I have had relief from a TENS machine, and nerve blocks. Hope that makes sense.

naadia | @naadia | Mar 12 1:35am

In reply to @rritam "Almost 3 years in severe pain with NO HELP. I finally diagnosed myself! Twenty three (23)..." + (show)

I totally empathize with this feeling!!!

naadia | @naadia | Mar 12 1:38am

In reply to @sackerk "In May 2020, I started having pain in my lower right abdomen, by mid June spread..." + (show)

Not sure where you’re at but I’m in Canada. There are only 2doctors here that will perform this surgery.

naadia | @naadia | Mar 12 1:40am

In reply to @patsy2222 "My son has had the same pain like this for 6 years. He was just recently..." + (show)

I finally found a doctor in Canada by searching up authors of research papers in ACNES lol.

naadia | @naadia | Mar 12 1:43am

In reply to @amandajro "@patsy2222 the member you had wished to connect with is no longer receiving email notifications so..." + (show)

I’ve been on all the medications. They have been just basic management and a temporary solutions. I just kept taking more and more and stopped increasing last spring. Now I’m on a small dose of oxycodone to take the edge off. In my situation, the surgical option was the only way to go.

naadia | @naadia | Mar 12 1:49am

In reply to @wlong "My name is William and my wife suffers from chronic abdominal pain. We have been to..." + (show)

After a fall bladder removal, I went on a two year journey jumping around from various medical specialties to try and figure out where my pain was coming from. So many ER visits!! I finally found a general surgeon in a neighbouring community who diagnosed me with ACNES. Then I had to find someone to treat. I was able to get nerve blocks done in my own city, acupuncture, various pain killers etc. They have done all the scans and tried all the “things”. The only thing left was a surgical option with neurectomy. In my desperation I have read my fair share of research and found the name of a doctor who is performing the surgery on me in two weeks (Calgary, AB, Canada). I’m beyond thrilled and finally have hope again.