ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

I had robotic laparoscopic surgery for ACNES on 9/2/21 after suffering terribly for 10 months. Dr Thomas Gillespie at St Joseph’s Hospital in Phoenix not only is familiar with ACNES but is said to be the only doctor in the world to perform this robotically. He does accept new patients. He cut T8, T9 and T10 nerves curing me.

Hello all! I suffered from ACNES for over 3 years. It is the worst pain I have ever had and I cannot describe it accurately. I farm and ranch and have had my share of broken bones, pulled muscle, cuts, falls and even a hyperextended elbow. I understand what pain is and have worked through it. ACNES is relentless and around the clock and, in my case, took 3 years to correct.

I was told by 80% of medical professionals that it was a psychological condition. In other words, it's all in my head. I feel quite strongly that this is a phrase that should not be spoken to anyone in extreme pain!! It was a demoralizing and dehumanizing experience. Cruel and inhumane, in my opinion.

One week ago tomorrow I underwent a laparoscopic procedure that involved cutting nerves responsible for my pain. In my case it was T9, T10 and T11. The Doctor was originally going to take T10 but saw that 9 and 11 where damaged or atypical.

Bottom line is that I awake thismorning without pain. I have had zero nerve pain since the procedure, period. The pain I'm experiencing now is from the surgery.

I have my life back. I am grateful.

Who was your doctor - was it Dr Gillespie in Phoenix?

Yes, under your recommendation I flew down to see him in March. After my visit we scheduled the surgery for April 28th. Notbsure if I thanked you for pointing me in the right direction but I am grateful!

How long before the pain from the surgery was better? I feel different every day. Of course, the nerve pain is completely gone.

Here's my story:

I've had abdominal pain in my right side for many years. You've heard the tale: Tons of exams, GI doctors, talk about gall bladder surgery All tests normal. CTs, MRIs, Ultrasounds, etc. etc. The pain kept getting worse all the time.

Finally heard about ACNES. It sounded exactly like my problem. So, I started with the injections. Nothing worked.
I couldn't handle medication. (The only thing that eases the pain at all is ice and also TENS unit helps somewhat.)

Desperate, I had a neurectomy. Surely, that would fix it.
It didn't. Surgery didn't help.

I don't know what else to do.
Any ideas?

Thanks

My pain is not constant. It's usually triggered by physical activity, but often minimal activity.
I get it mostly after I've been at rest for a long while and then start moving. Takes about 10 minutes to start, and it lasts anywhere from 20 minutes to two hours.

Welcome @noaz, I can't begin to imagine how difficult it must be for you to deal with the pain. It's good that you have found that ice and a TENSunit helps some but it's good to keep searching for answers and learning as much as you can about the condtion. I did find this article that sounds like it could be an answer for something to learn about if it works.

-- Ultrasound-guided intervention for chronic abdominal wall
pain; Overlooked but curative approach: https://jcimcr.org/pdfs/JCIMCR-v3-1836.pdf

Have you ever used Google Scholar (https://scholar.google.com/) for searching for the latest treatments or information?

Thanks very much, John.

I actually had an ultrasound guided injection. That's one of several injection attempts, each a little different. None of them worked...

Hi noaz,
I too suffered terribly from ACNES from early 2021 - horrible pain. Long story short after extensive visits to doctors I, by grace of God, found a great surgeon at St Joseph's Medical Center in Phoenix (Dr Thomas Gillespie). After 2 consultations he performed Robotic Laparoscopic surgery on me on 9/2/21. He cut my T8, T9 and T10 abdominal nerves. I left the hospital hours later cured. I'd be happy to discuss at length should you wish. Jeff in AZ

Did you get any relief at all from the injections? I didn't.