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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.

jgroudan | @jgroudan | Dec 15, 2023
In reply to @daisy4 "Since I cannot publish a link or URL on this website, ask online for Abdominal Wall..." + (show)
@daisy4

Since I cannot publish a link or URL on this website, ask online for Abdominal Wall Pain Questionnaire. Go to Table 3. This strategic questionnaire that can differentiate between visceral (inside the abdomen) versus abdominal wall pain. Fill out the questionnaire without looking at the answers which will give you a point. If you score 10 or more points, there is a very high level of confidence that you are suffering from ACNES.

Stay strong!

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You do not need a 10 pt questionnaire!!! What you need is to perform the carnett test on yourself or with Dr who is knowledgeable about ACNES then get trigger point injections in that area to see if there is temporary relief.
It's all on youtube i.e., carnett test, abdominal cutaneous nerve entrapment.

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3 replies
vika77 | @vika77 | Jan 31, 2024
In reply to @jgroudan "You do not need a 10 pt questionnaire!!! What you need is to perform the carnett..." + (show)
@jgroudan

You do not need a 10 pt questionnaire!!! What you need is to perform the carnett test on yourself or with Dr who is knowledgeable about ACNES then get trigger point injections in that area to see if there is temporary relief.
It's all on youtube i.e., carnett test, abdominal cutaneous nerve entrapment.

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Hello. I have been experiencing pain for 1.5 years. Can you share what type of pain you felt?

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vika77 | @vika77 | Jan 31, 2024
In reply to @jgroudan "You do not need a 10 pt questionnaire!!! What you need is to perform the carnett..." + (show)
@jgroudan

You do not need a 10 pt questionnaire!!! What you need is to perform the carnett test on yourself or with Dr who is knowledgeable about ACNES then get trigger point injections in that area to see if there is temporary relief.
It's all on youtube i.e., carnett test, abdominal cutaneous nerve entrapment.

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Aching, pressing, burning, shooting? At what moments? I am diagnosed with ACNES, but they say that the pain I feel does not qualify. Every detail, little detail is important

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1 reply
quasii | @quasii | Apr 2, 2024

Does anyone knows this: ACNES (Anterior Cutaneous Nerve Entrapment?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 2, 2024
In reply to @quasii "Does anyone knows this: ACNES (Anterior Cutaneous Nerve Entrapment?" + (show)
@quasii

Does anyone knows this: ACNES (Anterior Cutaneous Nerve Entrapment?

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Welcome, @quasii. I moved your post to this existing discussion so that you can read previous posts and connect with other members like you. See:
- ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome: https://connect.mayoclinic.org/discussion/acnes-abdominal-cutaneous-nerve-entrapment-syndrome/

Have you been recently diagnosed with ACNES? What led to your diagnosis?

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naadia | @naadia | Mar 12 1:28am

I did all of these same things. I’m now pursuing a surgical solution.

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naadia | @naadia | Mar 12 1:33am
In reply to @vika77 "Aching, pressing, burning, shooting? At what moments? I am diagnosed with ACNES, but they say that..." + (show)
@vika77

Aching, pressing, burning, shooting? At what moments? I am diagnosed with ACNES, but they say that the pain I feel does not qualify. Every detail, little detail is important

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I’ve always had a hard time really describing my pain with this but I feel confident that ACNES is it. It’s a diagnosis of omission. You have to figure out what it’s NOT before you figure out what it actually IS.
Typically my pain is daily. Worse in the evening and at night. It sits just below my ribs on the right side. If I stand next to the corner of my kitchen counter I can get some relief by pushing the corner into my belly. It feels deep but I can never quite pinpoint it, even though it affects such a small area. I have had relief from a TENS machine, and nerve blocks. Hope that makes sense.

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naadia | @naadia | Mar 12 1:35am
In reply to @rritam "Almost 3 years in severe pain with NO HELP. I finally diagnosed myself! Twenty three (23)..." + (show)
@rritam

Almost 3 years in severe pain with NO HELP. I finally diagnosed myself! Twenty three (23) doctors claimed they "never heard of A.C.N.E.S." so my stack of medical literature was ignored, as was my horrendous pain. Can't sit for nearly 3 years. I repeatedly posted on this site and others, no response to A.C.N.E.S, and NOW you're saying it's COMMON? Central sensitization has worsened the pain. I had all the hallmarks: prior abdominal surgeries, positive Carnett's, and trigger point injections but only temporary relief..21 stupid prescriptions that did nothing. This month I FINALLY FOUND A PHYSICIAN WHO LISTENED, and I underwent resection of anterior cutaneous nerve branches at T7, T8, and T9, with pathology reporting three traumatic neuromas. Gee, I'm SOOOO glad you figured it out. Congratulations.

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I totally empathize with this feeling!!!

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naadia | @naadia | Mar 12 1:38am
In reply to @sackerk "In May 2020, I started having pain in my lower right abdomen, by mid June spread..." + (show)
@sackerk

In May 2020, I started having pain in my lower right abdomen, by mid June spread to horrible pain/burning/tightness in my URQ. By August it was mirroring on left UQR and has since spread to lateral on both sides and pelvis. Has anyone else had this type of spread, and tightness in ab and sternum? (MALS ruled out at Mayo)
Like others, I went through months of tests; multiple MRI's, CTs, HIDA, xrays etc and ultimately ended up at Mayo. Had positive Carnett sign in multiple locations. Returned home and had Transversus plane block (TAP) by local pain dr here in Chicago area. Left side offered about 2 weeks relief, right (the worst side) NO relief. Doctor says he doesn't know what else to do and I should find someone else. I've had no luck finding doctors familiar with ACNES protocol defined by Netherlands clinic (check out https://pubmed.ncbi.nlm.nih.gov/?linkname=pubmed_pubmed&from_uid=29593000). Can anyone recommend a doctor who knows about ACNES...I am willing to travel if there is hope it will help. Also, anyone have any idea how to get referred or in touch with Netherlands clinic?

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Not sure where you’re at but I’m in Canada. There are only 2doctors here that will perform this surgery.

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naadia | @naadia | Mar 12 1:40am
In reply to @patsy2222 "My son has had the same pain like this for 6 years. He was just recently..." + (show)
@patsy2222

My son has had the same pain like this for 6 years. He was just recently diagnosed with Acnes, but the doctor only gave him one shot and some medicine. He still has pain. This doctor doesn't seem to think it is really a big problem. He said the one shot should fix him. He is desperate. Please tell me what doctor you used.

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I finally found a doctor in Canada by searching up authors of research papers in ACNES lol.

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