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ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome
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?**
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Dr Thomas Gillespie - St Joseph's Medical Center Phoenix, AZ. He performed Robotic Laparoscopic surgery for ACNES on me 9/2/21 cutting the T8, T9 and T10 nerves on right side below rib cage. After 9 months of unbearable pain I left the hospital PAIN FREE - cured and now it's just a distant bad memory. Dr Gillespie is an amazing surgeon and does take new patients.
I contacted his medical assistant and she requested I forward PCP medical records and check to make sure my insurance will cover. Its been three years of a living nightmare three groin surgeries I didn't need and I had to relocate unable to properly care for myself. What started out as slight left testicle pain blossomed into an unbearable condition and it is not quite over yet, but there is hope.
Hopefully Dr Gillespie can cure you if it is ACNES.
I am 76 year old male , I started with abdominal pain 2 years ago and searched for answers with many hospital visits and tests. They found nothing. symptoms were severe pain on left side of abdomen. Very tender spot 2 inches left of belly button. my doctor finally sent to pain management where she instantly recognized the problem , abdominal cutaneous nerve entrapment. This soot was in the same spot that I had a small hernia repaired a year before, She gave me shot in that spot with lidocaine and steroid, As soon as needle hit the spot instant relief, After a year its starting to return, I have had severe pain on stomach wall which seems to bring on continuous nausea and diarrhea , Cant get another injection for 3 weeks. My question would ACNES bring on this much stomach inflammation nausea and diarrhea constantly. Its getting to the point I can't function . need help . I was astonished how many doctors and hospitals never heard of this problem and some still refuse to acknowledge it.
Hello @dennyb2317 and welcome to Mayo Clinic Connect. It is so good to hear that you found something that was effective in treating the pain with that injection.
I found an article that may be of interest to you, particularly the sections on Epidemiology and Treatment so you can see what other options are recommended.
- Chronic Abdominal Wall Pain: A Common Yet Overlooked Etiology of Chronic Abdominal Pain: https://www.mayoclinicproceedings.org/article/S0025-6196(18)30852-8/addons#secsectitle0025
I wonder if the stomach inflammation and nausea and diarrhea may be an indication of some sort of infection rather than a symptom of ACNES? Have you considered going in based on your new symptoms to confirm if they are associated or not?
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4 ReactionsThank you for your reply. Well before I had the steroid injection a year ago I had abdominal pain for many months and had an endiscopy, colonoscopy . all the blood work and urine sampling done. This all came back ok. I had a gastrologist at the time and ask her about acnes because I seemed to have a small single spot of soreness , She said she really never heard of ACNES and did nothing more but said use antacids and such. That did no good. I went back to my family doctor and she said she could do nothing more for me so she sent me to pain management, As soon as I told her the pain was localized to one spot and seemed to radiate from there she knew what it was . I have so much bloating with this constantly. I don't think emergency room doctors , gastrologists knew anything about ACNES.
I’ve been reading about ACNES on this thread. Never heard of it before. Really caught me eye! Does the pain come and go or is it constant?
The pain is pretty much constant . Remaining seated and relaxed it subsides some. Read this article . It gives some insight into my symptoms. en.wikipedia.org/wiki/Anterior_cutaneous_nerve_entrapment_syndrome
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1 ReactionWelcome @ginawomack07, Here's some information on ACNES that might answer some of your questions.
Anterior cutaneous nerve entrapment syndrome: management challenges: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5245914/
Have you been diagnosed with ACNES or have symptoms that you believe might be from ACNES?
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1 ReactionI was diagnosed with ACNES from pain management with Carnetts test and injections . I have been ok till about 6 weeks ago. lidocaine and steroid lasted about a year. Its hard to pinpoint where the abdominal pain and severe bloating comes from . I know I went through all the stomach tests last time and they found nothing. I have been told that I have IBD but that seems to be a vague statement that they really have no solutions.
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