ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

My son is 13 and was just diagnosed with ACNES my Dr. Tollestrup in Nevada. My sons symptoms are a constant burning pain in his upper abdomen. It hurts even more if he is active or eats. It’s painful for him to walk and makes him very nauseous to ride in a car. He has had this constant burning pain for 6 months. He does better if he is sitting down or lays on his right side. He has been seen my countless Doctors and had every test and lab in the book done on him. None of the pain medicines help. I read about ACNES syndrome and contacted Dr. Tollestrup. After reading my sons medical story, he believed he had ACNES and wanted to evaluate him and try a diagnostic nerve block. The nerve block immediately took away his pain. Now we are waiting to have surgery. We are ready for my son to get back to being normal. Hope this helps.

Almost 3 years in severe pain with NO HELP. I finally diagnosed myself! Twenty three (23) doctors claimed they "never heard of A.C.N.E.S." so my stack of medical literature was ignored, as was my horrendous pain. Can't sit for nearly 3 years. I repeatedly posted on this site and others, no response to A.C.N.E.S, and NOW you're saying it's COMMON? Central sensitization has worsened the pain. I had all the hallmarks: prior abdominal surgeries, positive Carnett's, and trigger point injections but only temporary relief..21 stupid prescriptions that did nothing. This month I FINALLY FOUND A PHYSICIAN WHO LISTENED, and I underwent resection of anterior cutaneous nerve branches at T7, T8, and T9, with pathology reporting three traumatic neuromas. Gee, I'm SOOOO glad you figured it out. Congratulations.

Nothing against Dr Tollestrup - I’m sure he’s an excellent surgeon. I feel I need to let you know that I was cured from this horrendous pain by Dr Thomas Gillespie at St Joseph’s Medical Center in Phoenix via Robotic Laparoscopic procedure. You can see a similar surgeon on YouTube under hernia robotic laparoscopic surgery.

Hi, still working on getting Dr. Gillespie to help me. He asked my pain doc to identify which nerves to cut. So pain doc did a series of abdominal shots and we are now doing a series of 3 spinal blocks. We are on # 3 this coming Tuesday. T9, T10 which was #1 did nothing for relief but aggravate the pain. T10, T11 which was #2 gave relief for about 1/2 hour. I worked very hard to try and facilitate a talk between the two doctors, but as of last week pain doc had no luck getting hold of Dr. G. I'm losing hope. Anything you can say to reassure me, or suggestion about communicating? Thanks for reading and hope you're doing well.

Hi Susan,
Don’t know if it will work but I will contact his office.
Jeff

Hello all. I’ve been suffering from ACNES for up to 10 years now.
I figured out what it was on my own a few years ago but I couldn’t find a surgeon near me in Canada with any experience to deal with it. I finally found a plastic surgeon who was willing to give it a try, even though she had no experience. The surgery was both a success and a failure. It was successful in the sense that it removed my original pain that was underneath my top row of abdominal muscles. It was unsuccessful in the sense that there was collateral damage and now I have pain on my abdominal wall right underneath where the six inch incision line was. This pain is 90% as similar and as bad as my original ACNES pain was, it’s just in a different spot now. I’m guessing that either a nerve was cut unintentionally or the scar tissue from the surgery has entrapped an otherwise healthy nerve.

Do you think that this still qualifies as ACNES?
Would Dr Gillespie be able to help me?

I don’t know you’d qualify based on your past surgery but it cant hurt in contacting Dr Gillespie. If any surgeon can help it’s him. Good luck. P.S. if you need any other advice private message me.
Jeff in AZ

I don’t know you’d qualify based on your past surgery but it cant hurt in contacting Dr Gillespie. If any surgeon can help it’s him. Good luck. P.S. if you need any other advice private message me.
Jeff in AZ