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ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome
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?**
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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.
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.
Dr Gillespie’s # is 602.406.3874.
Got it. Thank you very much!
@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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1 ReactionAmanda, yes you are correct.
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1 ReactionIf 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.
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/
I have left 3-messages for Dr. Gillespie but have not received a reply. Any ideas why? I am ready for the surgery
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.
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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