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?**

@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.

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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.

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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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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.

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

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@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.

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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?

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@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.

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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!

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@lasirvent

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!

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@lasirvent So did you get tested for MALS and did you have then a surgery/procedure. I havent been checked for that yet but I do think there is one doctor in STL that deals with MALS. The pain for the first year was navel to xiphoid process, constant pain and aching but no problems with nausea or bathroom issues. Then around the 16 month the pain extended down to pelvis. Mornings are the worse once I awake after say 5-7 hrs of rough sleep I go to the bathroom and pain is terrible right afterwards. I have the pain when I awake but most mornings after the pain from navel to pelvis is 8.5, its slowly then adds a lot of pain up the middle to xiphoid and makes a ridge of pain below the rib line. I have pain both above and below navel that take turns on who wants to be the worst pain. My next block by new pain mgt doctor is in two weeks and it will be ilioinguinal and iliohypogastic. Those were done with steroids after my first injection that was just the numbing medicine. That was 16 months ago, it helped after a day for say 48 hours of 80% less pain, then it came back. They then tried other blocks but not celiac or splenic block. Celiac would be the next block to try. Then I guess Mals, I just can't find a script that provides relief of really any kind, I wish taking a 10mg Hydro, Oxy, antidepress, gabapenin or lyrica helped but they don't. Did you every find a drug that helped?

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@amandaburnett

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?

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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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@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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Hi. I have had ACNES in my sternum & left chest for over 2 years. This is what I have learned so far with treatment that works for me: gabapentin medication, multiple cold laser therapy which lessens the pain events I have each week which I found at Mounds View Chiropractic clinic, Garden of Life CBD 800mg lotion. I have found there are no real specialists for ACNES. You will most likely get referred to a pain clinic. I went to a pain clinic & I felt their treatment was pretty radical with nerve blocks (had them didn’t work well), pain pumps (don’t want to be on narcotics) etc. this was the best balance I found that allows me to live a pretty normal life. I still have pain days but they aren’t as intense or last as long as they previously did.

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@tphillipsmn12

Hi. I have had ACNES in my sternum & left chest for over 2 years. This is what I have learned so far with treatment that works for me: gabapentin medication, multiple cold laser therapy which lessens the pain events I have each week which I found at Mounds View Chiropractic clinic, Garden of Life CBD 800mg lotion. I have found there are no real specialists for ACNES. You will most likely get referred to a pain clinic. I went to a pain clinic & I felt their treatment was pretty radical with nerve blocks (had them didn’t work well), pain pumps (don’t want to be on narcotics) etc. this was the best balance I found that allows me to live a pretty normal life. I still have pain days but they aren’t as intense or last as long as they previously did.

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Hi. Thank you for the info. I should have mentioned I tried gabapentin but had horrible side effects, namely tremors and complete inability to think (or work). I've never heard of cold laser therapy but I'll search for chiropractors in my area that may do it. My current chiro does not. I take CBD tincture but have not tried lotion, will get that as well. Still hoping to find a pain doc or neurologist that knows about this syndrome.

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