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?**

@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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@hopeful33250

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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Hi Theresa, I have no neurological issues. Prior to this pain I was extremely active fit 67 year old with no medical issues. I am constipated from the Vicodin I was given by pain management. I am also on Lyrica. No diarrhea. If you have any suggestions of where I can go for help please let me know. Thank you

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@mmoss That sounds quite troublesome, Michelle. Pain without explanation is never a cake walk and finding physicians who are willing to go the extra mile can be difficult. What area do you live so I might recommend some places? Also, may I ask, how long did you have the pain before they started you on vicodin?

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I live in Sarasota Florida but been staying with my daughter in St Petersburg. I have had this pain for 8 weeks. Started Vicodin 10 days ago. Was on Lyrica for 3 days but it did not seem to help. The pain management just switched me to Gabapentin 100 mg. I really want to go to the Tampa Memorial Hospital, as it is a teaching hospital, so they can try to monitor this pain and find out what the cause. Unfortunately, if you want to go to the hospital you have to go through emergency and they only give you something for pain and send you on your way.
Any suggestions are appreciated. Thank you so much for your help. Michelle

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@mmoss

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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Hello Michelle,
I’m not Amanda, but have a few suggestions.
Have you tried an anesthesiologist, they work with pain management, what about an OB/gyn doctor, even a urologist for bladder.
Sounds like your discomfort is nonspecific.
Could it be a muscle, or hernia?
Funcountess

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Not familiar with this diagnosis..I use “g” pain 2xs day for knee pain. Know there are numerous diagnosis for various issues that use “g”

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