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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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Most diagnostic nerve blocks are the same, in my experience.
The anaesthesiologist injects a numbing agent, like lidocaine or something similar into the painful area that you pointed at.
If they hit the right spot and your pain is nerve related, then you should have partial or complete relief from your pain for a short period of time, up to two hours or sometimes more, but rarely more than a day or two.
If the diagnostic injection worked, then they can try another injection using a steroid added to it.
For some incredibly lucky people, one or two steroid injections can sometimes permanently reduce their pain. But that is not the normal outcome for most ACNES sufferers. However, it is definitely worth a try for you.
Hi Diane,
If your husbands pain is in a very specific spot and not spread over a general area then a simple test for your husband to do first is “Carnett’s test” or Carnett’s sign. If you Google “Carnetts test”, you’ll find plenty of links.
Here is one that might pop up.
It’s a very simple test to detect if the pain is coming from the abdominal wall (ACNES) or from something inside his abdomen instead.
My diagnostic lidocaine pain block lasted just an hour, or less. My pain doc said that was enough to show him that he'd located the nerve involved. This week, he's going to repeat it and add a steroid. He said the steroid doesn't guarantee anything, but it might work. I am at the end of my rope with this continuous pain. I hope this will work.
Did you receive partial or 100% complete relief from the pain?
Doctors tend to be very conservative and do the least invasive procedure first and then work their way higher.
Using a steroid is the next recommended step and could possibly be repeated once if it didn’t work completely the first time.
I believe the next step after that would be to attempt a radio frequency or other type of nerve ablation.
The final possible step is surgery to disable the nerve that is causing you pain.
We were looking at this video yesterday. I realize by researching that the Carnetts test is what he needs, yes, but how do you get a doctor to do it? They don't want you telling them what to do.....I will take any advice given
Diane Anderson
Well, the first thing to do would be to perform the test yourself at home. You don't need a doctor to do that.
Get your husband to lie flat on his back and ask him where the pain is. Press down on the painful spot and then get him to raise both his legs at the same time using his stomach muscles. If his pain gets worse, then that is a positive test response. You can then go to the doctor and say you have a positive Carnett's test and what is he/she going to do about it.
They should at least do a diagnostic injection as described in some of the earlier posts here.
If they refuse to do anything, well, then it's time to find a new doctor, I guess.
OK we will do that first thing in the morning when he is in pain
Thank you so much
I received partial relief from the pain. I am looking into surgery to disable the nerve.
I went to a pain management center. I already was diagnosed by a gall bladder specialist.
I was diagnosed approximately March of 2021. Pain unbearable. Recommended to top gall bladder surgeon and after 10 minutes told me it was not the gallbladder but that I was suffering from abdominal cutaneous nerve entrapment. He sent me to a pain clinic. 1st shot worked but not even for a day. 3 more shots no relief. By, I believe, I found a surgeon at St Joseph's Medical Center in Phoenix. He performed, as an out patient) robotic laparoscopic surgery severing my T8, T9 and T10 abdominal nerves. Left hospital a 4pm CURED. Of course some soreness from the cutting. Me email is jgroudan@cox.net if you have any questions. Jeff