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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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hi naadia, I thought I had ACNES until I was examined by a neurosurgeon who rulled out ACNES arguing that the spots on my stomach where I feel burning sensation, tintling and needle prickles do not match with ACNES. He told me I have poly-neuropathy.
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1 ReactionI wish you all the luck and I hope this puts an end to the long struggle you have had with this sickness.
Im 45 yrs old male and i was the 23rd patiant in Israel to have this surgery performed in 2022 and now what I feel is just numbness in the area. I'm very satisfied and happy I had the Surgery.
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1 ReactionI believe I have ACNES but at Kaiser in my area there is only one doctor who does the trigger point injection and he decided I don't have it because the injection didn't work. I doubt that I could get them to do it again. Then my PCP decided it's fibromyalgia. To learn more, I went back to the beginning of this forum and read all the posts. I'd like to THANK YOU, jgroudan, for your many posts telling about your experience with Dr. Gillespie, and suggest that anyone new on this forum do the same - go back and read from the beginning. I do have fibromyalgia, chronic fatigue syndrome, chronic lymphocytic leukemia, and long covid, but I believe this awful burning pain on my left side that appeared a year ago is ACNES. I'm currently trying Tramadol for pain but will be changing to gabapentin soon to see if it makes any difference. After that, if no help, I plan to pursue ACNES again and will try to get a diagnosis and then will drive to Phoenix to see Dr. Gillespie if I have to. With every disease/syndrome I have, at the age of 70 I don't need to put up with something that can actually be cured! (Carnett test and pinch test are positive, by the way.)
Thank you for this info.
I have been suffering for 17 years. As most people note few Drs aware of this condition and most are NOT interested to learn.
My ACNES is so severe I am bedridden/on liquid diet/ severe abdominal/ back pain.
Pray the above Dr will accept me. We need TO ALL GET. TOG. TO BRING AWARENESS...this condition can make living beyond agony. Thank you.
I had a neurectomy two weeks ago. I was diagnosed with ACNES after two years of unexplained abdominal pain and sooo many treatments and procedures. All signs point to healing! I haven’t felt any of the previous pain, only the surgical pain. I’m so hopeful that this journey is over.
Interesting. Have you had any treatments that have provided relief?
Surgery completed 2 weeks ago and I’m feeling better than I have in years!!
I went to a neurosurgeon and after an examination he told me I have no ACNES. He told me I have poly neuropathy. So I appreciate if people dont react on my first assumption when I thought I had ACNES.
No, because first of all I still don't have a neurologist. In spite of being reffered to Neurologist 3 times by my general doctor the have rejected me for different reasons. The reason is that two years ago I filed a complaint against the radiologist who caused all this. So the doctors don't want to help my case against the radiologist by confirming the diagnosis of neurosurgen.