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 group.

@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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@amandaa

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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@sackerk

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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I can relate with the gabapentin. Lyrica is also a good alternative. If you go to Mounds View Chiropractor website I believe you can get the exact name of the laser used. Let me know if you find a specialist. Try searching NERVE ENTRAPMENT specialists, seem to have more luck.

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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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@sackerk Welcome to Mayo Clinic Connect, a place to give and get support.

@sackerk, You are wondering how to be referred or how to get in touch with Netherlands clinic.

May I ask more about the Netherlands Clinic? What is the name and location of the clinic?

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I have had lower abdominal burning for 6 weeks. I have had every test possible and everything comes back normal. Thinking this could be nerve pain. Has anyone ever experienced this and what treatment did you have to get rid of the pain. Thank you

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@mmoss

I have had lower abdominal burning for 6 weeks. I have had every test possible and everything comes back normal. Thinking this could be nerve pain. Has anyone ever experienced this and what treatment did you have to get rid of the pain. Thank you

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Hi @mmoss,

I'm sorry to hear that your abdominal pain is not subsiding and that all of the tests have not given you any diagnosis. That can be very frustrating.

Since you mention the possibility of this pain being nerve pain, I'm wondering if you have other neurological issues? I'm thinking of things like neuropathy, or MS or PD, etc. Given the location of your pain, I'm also wondering if constipation and/or diarrhea are also an issue?

I look forward to hearing from you again.

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@mmoss

I have had lower abdominal burning for 6 weeks. I have had every test possible and everything comes back normal. Thinking this could be nerve pain. Has anyone ever experienced this and what treatment did you have to get rid of the pain. Thank you

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Hi @mmoss, welcome to Mayo Clinic Connect. You will see I moved your inquiry to a conversation that may be of benefit to you. Your symptoms sound a lot like Abdominal Cutaneous Nerve Entrapment Syndrome.
Have you ever heard of this?

I took the liberty of including an article about it below.
http://sjrhem.ca/abdominal-acnes-anterior-cutaneous-nerve-entrapment-syndrome-and-trigger-point-injections-in-the-ed/
Do you find that anything helps the pain whether movement or what you eat?

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Hi Amanda, Thank you for the information. My pain is a burning in the lower abdomen. It is not a sharp pain. It does not hurt when touched. When I move it doesn’t move or radiate. I was an extremely health vibrant women prior to this pain. It came out of nowhere. I am now in pain management and hate taking these drugs for pain. Do you have any suggestions of a Dr that might be of help? I tried to get into a Mayo Clinic but they said abdominal pain is too unspecific and there was a 3 month wait. Any suggestions would be extremely helpful. Thank you. Michelle

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