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

Dr Gillespie @St Joe’s in Phoenix performed Robotic Laparoscopic surgery on 3 of my entrapped nerves (ACNES) 10 days ago. Went home same day. Little sore but CURED and back to my old self. Nothing short of a miracle. Thank God for Dr Gillespie!!

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On-line I located a Dr. named Thomas L Gillespie, surgeon at St. Joseph’s Hospital in Phoenix on W. Thomas Road. Am I on the right track? Thank you so much for taking the time to help. I am as desperate as a person can get.

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@amandajro

@saolson you may use this link to request an appointment: http://mayocl.in/1mtmR63

However, if you are already in touch with the Gastroenterology Department, you may wish to reach out to them to discuss your options with Dr. Sweetser.

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Amanda, in a earlier message on Mayo Connect a person named jgroudan spoke of a surgical procedure they had performed at St. Joseph’s Hospital in Phoenix. Can you see that “post”? Do you have the ability to find out if a surgeon at Mayo in Rochester, MN does that surgery? If so, which surgeon does it? If not, there is no sense wasting anyone’s time. Thank you.

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@saolson

On-line I located a Dr. named Thomas L Gillespie, surgeon at St. Joseph’s Hospital in Phoenix on W. Thomas Road. Am I on the right track? Thank you so much for taking the time to help. I am as desperate as a person can get.

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Dr Gillespie’s # is 602.406.3874.

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@jgroudan

Dr Gillespie’s # is 602.406.3874.

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Got it. Thank you very much!

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@jgroudan and @saolson I found this paper by Dr. Sweetser and in it, he references the surgical option I believe the pair of you are discussing.

- Abdominal Wall Pain: A Common Clinical Problem:
https://www.mayoclinicproceedings.org/article/S0025-6196(18)30671-2/pdf

Reference Information from Article:
"Surgical treatment with neurectomy is available for medically intractable AWP. The nerve bundle at the site of maximal pain is exposed, and a small segment is excised. This procedure should be considered only in patients who have debilitating pain with only temporary relief after
repeated injection treatments and when other causes of abdominal pain have been
excluded."

Is this the same procedure?

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@amandajro

@jgroudan and @saolson I found this paper by Dr. Sweetser and in it, he references the surgical option I believe the pair of you are discussing.

- Abdominal Wall Pain: A Common Clinical Problem:
https://www.mayoclinicproceedings.org/article/S0025-6196(18)30671-2/pdf

Reference Information from Article:
"Surgical treatment with neurectomy is available for medically intractable AWP. The nerve bundle at the site of maximal pain is exposed, and a small segment is excised. This procedure should be considered only in patients who have debilitating pain with only temporary relief after
repeated injection treatments and when other causes of abdominal pain have been
excluded."

Is this the same procedure?

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Amanda, yes you are correct.

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If Carnett's test is positive, and trigger-point injections are diagnostic but inadequate for pain relief, Mayo won't help with the surgical option, even though Dr. Sweetser's report described that. I don't understand why Mayo refuses to offer such help when that is clearly described in his article.

Editor's Note:
Carnett's sign is simple a diagnostic tool used at Mayo Clinic. Learn more from Mayo Clinic gastroenterologist, Dr. Amy Oxentenko. She talks about an article published in Mayo Clinic Proceedings, detailing the complexities of chronic abdominal wall pain (CAWP) – a condition that seems elusive to any workup. https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/chronic-abdominal-wall-pain/

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@jgroudan

Dr Gillespie’s # is 602.406.3874.

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I have left 3-messages for Dr. Gillespie but have not received a reply. Any ideas why? I am ready for the surgery

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No idea but I am having a follow up meeting with Dr Gillespie this Friday so if you private message me your contact information I will ask him and get back to you.

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Hi all, Just to clarify. Julie is right that Carnett's sign is a simple a diagnostic tool. Mayo Clinic gastroenterologist, Dr. Amy Oxentenko talks about it in the video below. Here's an article from The American Journal of Gastroenterology
– Carnett's Sign: An Easy Tool That Saves Unnecessary Expenses in the Evaluation of Chronic Abdominal Pain https://journals.lww.com/ajg/fulltext/2017/10001/carnett_s_sign__an_easy_tool_that_saves.1403.aspx

Learn more from Mayo Clinic gastroenterologist, Dr. Oxentenko. She talks about the complexities of chronic abdominal wall pain (CAWP) – a condition that seems elusive to any workup and how patients are treated at Mayo Clinic.

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