ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Thank you, groudan, I will check them out. I am trying to find a correct diagnosis, almost 4 years after my initial diagnosis of CRPS. Two physicians told me recently that I was misdiagnosed. So now I’d like to see a spine specialist to see what’s causing my terrible pain in both legs. Mayo Clinic didn’t accept me.

Just a note: Very few doctors have ever heard of this let alone how to treat it.

Sounds very much like Abdominal Cutaneous Nerve Entrapment Syndrome. Few doctor ever heard of and hardly any know how to treat. I found a doctor at St Joseph's Medical Center in Phoenix, Dr Thomas Gillespie, who severed the 3 nerves that were trapped and went home same afternoon cured.

I’m grasping at anything I can find. My husband started having severe abdominal pain four months ago. We’ve had CTs, MRI of abdomen and spine, colonoscopy and EGD. All came back normal. I came across ACNES in a google search and am wondering if this could be the answer. Pain has progressed to the point that he has lost 30 lbs. and is pretty much in bed almost all of the time. Is not able to function day to day. Our local primary doctor has tried to get a referral to Mayo, but they called and said not accepting new patients in gastrointestinal. What kind of doctor would diagnose this?

How did you get into Mayo and what department. My doctor recently sent a referral for GI and we were turned down. I came across ACNES today and am wondering if this could be the answer. We have had every test they can do locally and everything comes back normal. But, my husband’s pain has progressed to him being in bed and not able to function. He can’t even stand for his shirt or sheets to touch him. We are desperate for an answer.

I'm reply to pain in both legs. I was in hospital for 2 days for pain control. I was getting dilaudid prn and scheduled. The pain started coming gradually and then peaked then would subside for anywhere from 5-8 minutes then I'd feel it coming on again. I had ice packs on my legs. I cried so much the day I went to hospital, 7pm, that my eyes were swollen. I have had back issues for 20+years and if I stand too long in one place, my thighs get numb. I have woke during the night and either left or right thigh would be numb so I'd turn over. I can't lie on my back because that makes them numb. When I did wake during night, I was on my side. Just treating with pain meds and gabapentin right now. I do not want surgery. That pain in my legs was mostly in the thigh area and felt like it was deep inside my thigh. It's hard to explain and the ER doctor was going to send me home and I started crying and said omg I know you're not going to send me home with this pain. I was already taking hydrocodone every 4 hours and it was doing nothing and that's when he said we can admit you and try pain control if you want. It was terrible.

I think I can help you. My ACNES was cured 2 years ago by a surgeon in Phoenix. Contact me through Mayo private email. Too much to write about but there is great hope. Jeff G. Many on this site have been cured by Dr Gillespie.

Are there any physicians treating ACNES successfully beyond the good Dr. Gillespie in AZ? Also any treatments beyond cutting the nerves -- repairing them perhaps?

Check out Dr. Tollestrup in Nevada. He has had a lot of success helping patients with ACNES syndrome. He just confirmed my son’s diagnosis. He has a webpage and You Tube channel.

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.