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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 Support Group.

jgroudan | @jgroudan | Dec 9, 2021
In reply to @benacnes "Where did he sever the nerve? At the spine? Do you have numbness now or any..." + (show)
@benacnes

Where did he sever the nerve? At the spine? Do you have numbness now or any other effects?

Jump to this post

He put 4 entry points on my stomach. You can watch an almost identical robotic laparoscopic hernia procedure on youtube. There was minor discomfort from the cutting and noticeable numbness for a month or so but that's long gone. Only lasting effect is no more pain!!

REPLY
1 reply
benacnes | @benacnes | Dec 9, 2021
In reply to @jgroudan "He put 4 entry points on my stomach. You can watch an almost identical robotic laparoscopic..." + (show)
@jgroudan

He put 4 entry points on my stomach. You can watch an almost identical robotic laparoscopic hernia procedure on youtube. There was minor discomfort from the cutting and noticeable numbness for a month or so but that's long gone. Only lasting effect is no more pain!!

Jump to this post

Incredible. Just spoke with Dr. Gillespie's office. I need to get my medical records to them and go from there. I can afford a little bit but have no idea the actual cost. If it's under 20k I can swing it!

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1 reply
wlong | @wlong | Feb 14, 2022

My wife was finally diagnosed with this after hundreds of ER visits and hospital stays saying there was nothing wrong with her and no reason for the pain. Waiting to get the trigger point injection on March 14th until then doctors have tried to drug her up full of narcotics which does no help at all. There is a doctor at a Mayo Clinic who did the first successful surgery on a person with A.C.N.E.S He is trying to make the affliction famous so other doctors can know about it. His surgery was a success. The Mayo Clinic is in Phoenix Az. Hope this helps

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1 reply
kdpetti | @kdpetti | Mar 4, 2022
In reply to @rritam "Almost 3 years in severe pain with NO HELP. I finally diagnosed myself! Twenty three (23)..." + (show)
@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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Hello my name is Kenneth,

3+ years also not able to sit or bend over. Three surgeries that all made things worse much worse. I'm still suffering but I know it's ACNES!! Can you send the contact info of the Doctor you found here. Please help. I think you understand my desperation.

Thank you ❤️

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kdpetti | @kdpetti | Mar 4, 2022
In reply to @wlong "My wife was finally diagnosed with this after hundreds of ER visits and hospital stays saying..." + (show)
@wlong

My wife was finally diagnosed with this after hundreds of ER visits and hospital stays saying there was nothing wrong with her and no reason for the pain. Waiting to get the trigger point injection on March 14th until then doctors have tried to drug her up full of narcotics which does no help at all. There is a doctor at a Mayo Clinic who did the first successful surgery on a person with A.C.N.E.S He is trying to make the affliction famous so other doctors can know about it. His surgery was a success. The Mayo Clinic is in Phoenix Az. Hope this helps

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They don't take Medicare patients anymore. Say the don't know when they will.

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kdpetti | @kdpetti | Mar 4, 2022
In reply to @benacnes "Incredible. Just spoke with Dr. Gillespie's office. I need to get my medical records to them..." + (show)
@benacnes

Incredible. Just spoke with Dr. Gillespie's office. I need to get my medical records to them and go from there. I can afford a little bit but have no idea the actual cost. If it's under 20k I can swing it!

Jump to this post

Where is the Doctor located, please share. I'll Google but without first name or location might not find him.

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1 reply
kdpetti | @kdpetti | Mar 4, 2022

Three + years of not being able to sit or bend over. Three unnecessary surgeries and one nerve block targeting the ilioinguinal nerve not the nerves of the abdomen. Diagnosed with CRPS in August of 2021 but firmly believe if I find the right Dr that understands anatomy and this condition I can once again have my life back. 18+ hours a day on my back. This is no way to live. The Mayo won't take Medicare patients and they won't let you pay out of pocket, very disturbing but what can I do?

I contacted Dr Thomas Guillispe of Saint Joseph's of Phoenix as he's with Dignity Health the folks that misdiagnosed my condition. I'll do anything. This is no way to live.

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2 replies
benacnes | @benacnes | Mar 4, 2022

Howdy. JGroudan recommend Dr. Gillespie to me for treatment of ACNES. It's Dr. Thomas Gillespie at St. Joseph's in Phoenix, Arizona. I have my first appointment with him shortly. Dr. Gillespie will be the very first of many, many Dr's that is familiar with ACNES. I am hopeful.

REPLY
jgroudan | @jgroudan | Mar 5, 2022
In reply to @kdpetti "Three + years of not being able to sit or bend over. Three unnecessary surgeries and..." + (show)
@kdpetti

Three + years of not being able to sit or bend over. Three unnecessary surgeries and one nerve block targeting the ilioinguinal nerve not the nerves of the abdomen. Diagnosed with CRPS in August of 2021 but firmly believe if I find the right Dr that understands anatomy and this condition I can once again have my life back. 18+ hours a day on my back. This is no way to live. The Mayo won't take Medicare patients and they won't let you pay out of pocket, very disturbing but what can I do?

I contacted Dr Thomas Guillispe of Saint Joseph's of Phoenix as he's with Dignity Health the folks that misdiagnosed my condition. I'll do anything. This is no way to live.

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Did you get an appointment with Dr Gillespie?

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1 reply
kdpetti | @kdpetti | Mar 5, 2022
In reply to @jgroudan "Did you get an appointment with Dr Gillespie?" + (show)
@jgroudan

Did you get an appointment with Dr Gillespie?

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I talked with his medical assistant yesterday. They need my medical records and insurance approval. I'm working on it.

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