Connect
← Return to ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome
Discussion
ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome
Chronic Pain | Last Active: Mar 16 2:06pm | Replies (317)Comment receiving replies
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?
Replies to "In May 2020, I started having pain in my lower right abdomen, by mid June spread..."
Not sure where you’re at but I’m in Canada. There are only 2doctors here that will perform this surgery.
Connect
Hi. I have had ACNES in my sternum & left chest for over 2 years. This is what I have learned so far with treatment that works for me: gabapentin medication, multiple cold laser therapy which lessens the pain events I have each week which I found at Mounds View Chiropractic clinic, Garden of Life CBD 800mg lotion. I have found there are no real specialists for ACNES. You will most likely get referred to a pain clinic. I went to a pain clinic & I felt their treatment was pretty radical with nerve blocks (had them didn’t work well), pain pumps (don’t want to be on narcotics) etc. this was the best balance I found that allows me to live a pretty normal life. I still have pain days but they aren’t as intense or last as long as they previously did.