1. < Chronic Pain

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.

leet3415 | @leet3415 | Jun 4, 2020
In reply to @mkirby19 "Hello, my question is how did you get diagnosed with Acnes? My 14 yr old daughter..." + (show)
@mkirby19

Hello, my question is how did you get diagnosed with Acnes? My 14 yr old daughter has been in unbearable pain right side stomach for 3 years. Every test is normal. She is missing school and friends and we still are in same place we were at from the beginning . She is currently on cymbalta from her neurologist. We have gone through all(most) meds for GI. She also has nausea and vomiting ( up to 17 x a day) She just had an MRI done and of course normal! Any advice you can give ? We have been to three hospitals. Still no diagnosis. Thank you for any help you can give.

Jump to this post

Look for a positive Carnett’s test. It’s them pressing on the area to check for pain from receptors.

REPLY
leet3415 | @leet3415 | Jun 4, 2020

Please note in Nov 2020 it will be 2 years with this diagnosis & I’m still suffering. Like many have said trigger point injections only last so long. They are thinking also about Xiphoid Process Syndrome could be causing this pain as well. I currently take 1800 mg gabapentin a day & it helps make the pain a little more bearable. I saw 4 drs at the HP neurolo science center in St. Paul MN. I did 3 months of PT, no help. I went to a pain specialist & they just wanted to hand me Oxy & have me move about my day. I don’t want any narcotics period. Tried coming back to the Mayo for neurology & my case was REJECTED! After seeing another 3 specialist I finally found a place to help me. He’s a Chiropractor Neurologist who specializes in chronic pain. I go 2x a week for treatments that are intense but I have so much nerve damage from the lower sternum all the way across the left side of my chest, arm, shoulder, neck, and left upper back. Basically I learned that if it’s not treated nerve pain travels to other areas. This therapy is intense but it’s slowly helping and also training my brain pain receptors not to keep sending pain signals. I still have a lot of bad days & nights and have been to the hospital more times than I can count before this Chiropractor treatment. Any other suggestions??

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jun 5, 2020
In reply to @leet3415 "Please note in Nov 2020 it will be 2 years with this diagnosis & I’m still..." + (show)
@leet3415

Please note in Nov 2020 it will be 2 years with this diagnosis & I’m still suffering. Like many have said trigger point injections only last so long. They are thinking also about Xiphoid Process Syndrome could be causing this pain as well. I currently take 1800 mg gabapentin a day & it helps make the pain a little more bearable. I saw 4 drs at the HP neurolo science center in St. Paul MN. I did 3 months of PT, no help. I went to a pain specialist & they just wanted to hand me Oxy & have me move about my day. I don’t want any narcotics period. Tried coming back to the Mayo for neurology & my case was REJECTED! After seeing another 3 specialist I finally found a place to help me. He’s a Chiropractor Neurologist who specializes in chronic pain. I go 2x a week for treatments that are intense but I have so much nerve damage from the lower sternum all the way across the left side of my chest, arm, shoulder, neck, and left upper back. Basically I learned that if it’s not treated nerve pain travels to other areas. This therapy is intense but it’s slowly helping and also training my brain pain receptors not to keep sending pain signals. I still have a lot of bad days & nights and have been to the hospital more times than I can count before this Chiropractor treatment. Any other suggestions??

Jump to this post

@leet3415 You might be interested in myofascial release with a certified MFR specialist. If you have scar tissue or surgical scar tissue, MFR right be able to lease the restrictions ,lessen pain, and get dehydrated tissues working and moving again. You can have entrapments anywhere because of overly tight muscle and fascia. Here is our discussion with a lot of information. I do MFR myself and it helps me a lot. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
fireball59 | @fireball59 | Jun 5, 2020
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.

Jump to this post

I have been to so many doctors its ridiculous, and have had every test done possible... they all look at me like I am nuts ... finally found a pain clinic that Knows about ACNES ... I pray they can help me.

REPLY
1 reply
rritam | @rritam | Jun 5, 2020

@fireball59, I'm wishing you the best of care and treatment. You're not crazy--Drs. don't like it when you figure things out on your own. I wound up so desperate with pain that I knew was real--and so angry at being ignored. I got ignored anyway after I found my diagnosis.... None of them would consider it. (Damned with no diagnosis, damned WITH one.) The only reason I'm still messaging on Mayo's platform is that I hoped to hear from patients like myself that they found compassionate medical care and triumphed over physicians who don't listen and don't care. Good luck! Please message again.

REPLY
woogie | @woogie | Nov 5, 2020

Have you had an endoscopy? My pain has been so bad, I wanted to die. I have Barrett's esophagus. I have finally gotten a pill which helps. Thank God. I also have a hernia which is bulging out and is embarrassing but with all my issues, that is the least of my concern. I hit the side of the bathtub so hard with the top of my head, it fractured my C4 in my neck. I can't sleep and now have neck aches in addition to back aches, legs hurting. I am so lazy now but I am afraid to do anything until I see my surgeon next week . I am praying I don't need it. I don't even have a neck brace. Maybe it isn't as bad as I think.

REPLY
sacker33 | @sacker33 | Jan 15, 2021

Has anyone found a doctor in the Chicago area that understands and treats ACNES?

REPLY
1 reply
rt061069 | @rt061069 | Jan 18, 2021

@sacker33 I am from STL and did see a pain group that that says they treat abdominal pain and a wide arrange of treatments-. http://www.ppschicago.com. I am looking for someone too that knows about abdominal nerve pain. Tell us all about your pain issue.

REPLY
1 reply
Amanda Burnett | @amandaa | Jan 18, 2021

Hi @sacker33, I echo @rt061069 and welcome you to Mayo Clinic Connect. We would love to know what you are going through to better help with your question. Can you share a little more with us?

REPLY
1 reply
lasirvent | @lasirvent | Jan 18, 2021
In reply to @rt061069 "@sacker33 I am from STL and did see a pain group that that says they treat..." + (show)
@rt061069

@sacker33 I am from STL and did see a pain group that that says they treat abdominal pain and a wide arrange of treatments-. http://www.ppschicago.com. I am looking for someone too that knows about abdominal nerve pain. Tell us all about your pain issue.

Jump to this post

I had abdominal pain for 16 years and had so, so many tests done with no results or diagnosis. I then found the Mals Awareness group on Facebook. What you’re describing sounds like mals. Check them out!

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.