ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Posted by leet3415 @leet3415, Thu, Mar 28 10:30am

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
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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