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.

@iiirenek

Hello, I am posting for my father 57M. For over 16 years he has been dealing with chronic pain in his right mid-upper abdomen. Pain is severe, can be a 10/10 certain days. Causes insomnia and can be made worse from eating. He has had a gastric bypass with a supplemental surgery a few years later. He has had his appendix and gallbladder removed. Despite years of trips to different doctors all they did was prescribe painkillers and send him away. We were so excited when we found ACNES but even after 2 trigger point injections NOTHING. The injections did not even give temporary relief, they made no difference. Now, we are worried it may not even be ACNES. Perhaps it is MALS? If anyone can PLEASE let us know a possible diagnosis or referral to a doctor or surgeon in the NJ/NY area, it would be a godsend! Please respond if anything rings a bell!!!!!

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Dr Thomas Gillespie at St Joseph’s Medical Center in Phoenix does a robotic laparoscopic procedure which severs the effected nerves. Went home same day cured of horrible ACNES. He does take new out of state patients. JEFF

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I am in Virginia and I have a 10 yr that was diagnosed with ACNES syndrome several months ago. His pediatrician diagnosed him, and has recommended ibuprofen and heating pads which aren't offering a lot of relief. The pediatrician mentioned injections but doesn't know where to send him for it. There are pain clinics in my area but they don't treat kids. The only place I could find online that treats ACNES in children is the children's hospital in Boston. I'm just trying to see if anyone out there has any information or advice on where he could be treated in Virginia. I am willing to go out of state but would really prefer something local. Thank you.

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@mng07

I am in Virginia and I have a 10 yr that was diagnosed with ACNES syndrome several months ago. His pediatrician diagnosed him, and has recommended ibuprofen and heating pads which aren't offering a lot of relief. The pediatrician mentioned injections but doesn't know where to send him for it. There are pain clinics in my area but they don't treat kids. The only place I could find online that treats ACNES in children is the children's hospital in Boston. I'm just trying to see if anyone out there has any information or advice on where he could be treated in Virginia. I am willing to go out of state but would really prefer something local. Thank you.

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I was cured of horrible ACNES on 9/2/21 by Dr Thomas Gillespie at St Joseph’s Medical Center in Phoenix. He severed my T8 T 9 and T10 abdominal nerves by performing a Robotic Laparoscopic procedure on me. Went home same day. To qualify one need to visit a pain management center and get a trigger point injection(s) in the affected area. It is only a very temporary fix but it will verify that it is ACNES. Any surgeon will most likely require this done before a procedure/surgery is performed.

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@jgroudan

I was cured of horrible ACNES on 9/2/21 by Dr Thomas Gillespie at St Joseph’s Medical Center in Phoenix. He severed my T8 T 9 and T10 abdominal nerves by performing a Robotic Laparoscopic procedure on me. Went home same day. To qualify one need to visit a pain management center and get a trigger point injection(s) in the affected area. It is only a very temporary fix but it will verify that it is ACNES. Any surgeon will most likely require this done before a procedure/surgery is performed.

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Thank you.

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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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Hello,
Just stumbled on this post because I am trying to find a physician to help a friend that has FINALLY been diagnosed with ACNES. She is suffering a great deal – may I ask who you finally ended up seeing that listened to you? Thank You!

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@sgb429

Hello,
Just stumbled on this post because I am trying to find a physician to help a friend that has FINALLY been diagnosed with ACNES. She is suffering a great deal – may I ask who you finally ended up seeing that listened to you? Thank You!

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Dr Thomas Gillespie, surgeon at st Joseph’s Medical Center in Phoenix cured me of ACNES via robotic laparoscopically. Truly a miracle. I’d be happy to explain . You may contact me if you’d like to get details. He has cured other from this site . Jeff

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@jgroudan

Dr Thomas Gillespie, surgeon at st Joseph’s Medical Center in Phoenix cured me of ACNES via robotic laparoscopically. Truly a miracle. I’d be happy to explain . You may contact me if you’d like to get details. He has cured other from this site . Jeff

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Hi Jeff @jgroudan – you'll notice that we removed your email address. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

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@mng07

I am in Virginia and I have a 10 yr that was diagnosed with ACNES syndrome several months ago. His pediatrician diagnosed him, and has recommended ibuprofen and heating pads which aren't offering a lot of relief. The pediatrician mentioned injections but doesn't know where to send him for it. There are pain clinics in my area but they don't treat kids. The only place I could find online that treats ACNES in children is the children's hospital in Boston. I'm just trying to see if anyone out there has any information or advice on where he could be treated in Virginia. I am willing to go out of state but would really prefer something local. Thank you.

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There is a doctor in Baltimore. Don’t believe it’s laparoscopic.

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@johnbishop

Hi Jeff @jgroudan – you'll notice that we removed your email address. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

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Where is the secure link? Do not see it.

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@jgroudan

Where is the secure link? Do not see it.

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