ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Posted by leet3415 @leet3415, Mar 28, 2019

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?**

Interested in more discussions like this? Go to the Chronic Pain Support Group.

naadia | @naadia | Apr 10 2:14am

In reply to @quasii "I wish you all the luck and I hope this puts an end to the long..." + (show)

Surgery completed 2 weeks ago and I’m feeling better than I have in years!!

quasii | @quasii | Apr 10 2:19am

In reply to @quasii "hi naadia, I thought I had ACNES until I was examined by a neurosurgeon who rulled..." + (show)

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.

quasii | @quasii | Apr 10 3:00am

In reply to @naadia "Interesting. Have you had any treatments that have provided relief?" + (show)

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.

fireball59 | @fireball59 | Oct 11 12:56pm

In reply to @anna0215 "I want to THANK YOU for this post!!! I feel like I’m in a boat that’s..." + (show)

@anna0215 back here again. I did end up finding a pain clinic. Dr Lynch in Scottsdale AZ is an expert on it. They gave me trigger point injections first. Those do not work for ACNES Dr Lynch told me. So I had a couple of ablations. A lot of pain clinics I found are hesitant or don't do ablations on the tummy area. I can say I got relief from spasms for about a year. But recently, it is rearing up again. And I moved 2000 miles away. So now I have to find a new doc who knows about this. If I go to Mayo, if they take my insurance, I probably have to drive out of state. Not sure if we have one here, now I will be researching again. gaba never seems to help me much, and it made me suicidal. I hope you had some luck and found some help.