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?**

Liked by dvdhoover

@leet3415
I had trigger finger after carpal tunnel surgery. I didn’t want surgery to fix that so lived with it until I couldn’t move my finger, unbend it, without forcefully moving it with lots of pain. Started getting injections which helped for a couple months. Gradually after probably a year of injections it was improving. I have no problems with it today. So hang in there. Give it time and hopefully it may just work for you also.

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Did Mayo clinic try a neurectomy on you after unsuccessful treatment with trigger point injections? Did your pain get resolved? Over in the Netherlands there are doctors that actually specialize in ANCES. I am taking 1200mg of gabapentin 3 times a day…pain does not go away but it seems to help somewhat. I am debating whether or not to go to Mayo or the Netherlands…would appreciate your feedback. Lisa

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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.

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@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.

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Have her checked for Mesenteric Artery Ligament Syndrome

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@lasirvent

Have her checked for Mesenteric Artery Ligament Syndrome

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Thank you!

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I believe I got this syndrome. I am a former Gastric Lapband patient. The device broke twice. I have had terrible spasms for 13 yrs and can not find anyone to investigate if I have this syndrome. After all the reading and research I have done, I cant seem to find a doc who can test me for this or even has heard of it. I went back to Bariatric, he said its prob nerve damage, so I followed up and I went to neurologist, and he can not help me, I went to pain management, they can not help me. I called the gastro.. they have no clue. Please if anyone knows who I would go to for this problem please let me know. Again I suspect its Abdominal cutaneous nerve entrapment syndrome.. I fit this to a T

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@fireball59

I believe I got this syndrome. I am a former Gastric Lapband patient. The device broke twice. I have had terrible spasms for 13 yrs and can not find anyone to investigate if I have this syndrome. After all the reading and research I have done, I cant seem to find a doc who can test me for this or even has heard of it. I went back to Bariatric, he said its prob nerve damage, so I followed up and I went to neurologist, and he can not help me, I went to pain management, they can not help me. I called the gastro.. they have no clue. Please if anyone knows who I would go to for this problem please let me know. Again I suspect its Abdominal cutaneous nerve entrapment syndrome.. I fit this to a T

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Hi @fireball59, welcome to Mayo Clinic Connect. Please meet other members who are talking about abdominal cutaneous nerve entrapment syndrome (ACNES) in this discussion. Like you @leet3415 has seen many doctors and was finally diagnosed with ACNES at Mayo and @wancio mentions experts in the Netherlands.

Here's another discussion that may interest you.
– Has anyone been diagnosed with Abdominal Wall Pain https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-abdominal-wall-pain/

In this video, Mayo Clinic gastroenterologist, Dr. Amy Oxentenko talks about an article published in Mayo Clinic Proceedings, detailing the complexities of diagnosing chronic abdominal wall pain – a condition that seems elusive to any workup.

Does this video ring true to your pain experience?

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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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@wancio

Did Mayo clinic try a neurectomy on you after unsuccessful treatment with trigger point injections? Did your pain get resolved? Over in the Netherlands there are doctors that actually specialize in ANCES. I am taking 1200mg of gabapentin 3 times a day…pain does not go away but it seems to help somewhat. I am debating whether or not to go to Mayo or the Netherlands…would appreciate your feedback. Lisa

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Hi wancio, despite the Mayo Clinic Proceedings (2019) that Dr. Oxentenko cites, Mayo refused treatment, the 2nd time with a form letter.
I was headed to the Netherlands when COVID hit and flights shut down. Three years of horrendous pain with NO help: I had surgery5/5/2020 from a physician who finally accepted my research (Mayo did not)…he did resection of T7, T8, and T9 traumatic neuromas. I would head to the Netherlands before I'd go to Mayo, which only climbed on the 'bandwagon' with her recent video.

Liked by dvdhoover

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@rritam

Hi wancio, despite the Mayo Clinic Proceedings (2019) that Dr. Oxentenko cites, Mayo refused treatment, the 2nd time with a form letter.
I was headed to the Netherlands when COVID hit and flights shut down. Three years of horrendous pain with NO help: I had surgery5/5/2020 from a physician who finally accepted my research (Mayo did not)…he did resection of T7, T8, and T9 traumatic neuromas. I would head to the Netherlands before I'd go to Mayo, which only climbed on the 'bandwagon' with her recent video.

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@rritam:Really! The only "complexities" in treating A.C.N.E.S. are physicians' ignorance of the condition.

Liked by dvdhoover

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@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.

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

Liked by rritam

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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??

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@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??

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@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/

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@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.

Liked by rritam

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@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.

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