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ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Chronic Pain | Last Active: Jun 21 9:17am | Replies (305)

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@amandaa

Hi @sacker33, I echo @rt061069 and welcome you to Mayo Clinic Connect. We would love to know what you are going through to better help with your question. Can you share a little more with us?

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Replies to "Hi @sacker33, I echo @rt061069 and welcome you to Mayo Clinic Connect. We would love to..."

In May 2020, I started having pain in my lower right abdomen, by mid June spread to horrible pain/burning/tightness in my URQ. By August it was mirroring on left UQR and has since spread to lateral on both sides and pelvis. Has anyone else had this type of spread, and tightness in ab and sternum? (MALS ruled out at Mayo)
Like others, I went through months of tests; multiple MRI's, CTs, HIDA, xrays etc and ultimately ended up at Mayo. Had positive Carnett sign in multiple locations. Returned home and had Transversus plane block (TAP) by local pain dr here in Chicago area. Left side offered about 2 weeks relief, right (the worst side) NO relief. Doctor says he doesn't know what else to do and I should find someone else. I've had no luck finding doctors familiar with ACNES protocol defined by Netherlands clinic (check out https://pubmed.ncbi.nlm.nih.gov/?linkname=pubmed_pubmed&from_uid=29593000). Can anyone recommend a doctor who knows about ACNES...I am willing to travel if there is hope it will help. Also, anyone have any idea how to get referred or in touch with Netherlands clinic?