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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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I want to THANK YOU for this post!!! I feel like I’m in a boat that’s going down fast. My story: Woke up this this bulge in my belly and back pain on my right side on 2/11/22, Hubby decided I needed to go to the ER on 2/15/22. They did a CT with and w/o contrast. Morphine because my B/P was getting close to stroke zone. Sent me home with no meds! ER referred me to the GI dr and a surgeon.waited a month to see GI and month and a half for the surgeon.
Spent the next 10-15 days in bed, lost 15 lbs. The Hubby calls my PCP, bring her in…she didn’t believe I was in a wheel chair! Ive had additionally an MRI, 2 Ultrasound, endoscopy and colonoscopy all since February 15, 2021, they can not find anything. Since March 1, I am now taking, Trulance, Dicyclomine, Pantoprazole, Amitriptyline, and Lisinopril!! Plus my other meds, Hydroxyzine, Duloxetine, Methocarbomal, and Gabapentin. So nothing showed up on the “Dynamic Ultrasound” two days ago, and now I’m waiting for call backs! I just pray everyday and search for possible solutions! This seems like a possibility!
Why? I have constant pain.
hi i am writing for my daughter. these are the symptoms. (she has been seen by her bariatric surgeon, a neurologist, a neurosurgeon, and pcp)
"During the “food poisoning pain,” I always feel the material moving through my intestines until it finally comes out. And it doesn’t come out all at once like food poisoning. There’ll be about four spasms that push out the material until finally I feel no more pain and spasms. The sadness is that I have to sit for 1-2 hours until it’s all out. And the pain is sharp. But the food poisoning pain causes me to pretty much empty my bowels. That is why my intestines must spasm so much to move all that material from the upper to the lower colon." anyone also having similar pains?
Reading your post reminds me of myself. I have had pain since Jan of 2020. I’ve had 2 colonoscopies, hysterectomy & my left ovary removed in a 2nd surgery for suspected endometriosis. They have found nothing. My pm doctor mentioned Acne’s early on, but my pcp thinks it’s my ilioiguinal nerve. What are your symptoms? Or does your pain come and go? I ask, because mine comes and goes. I can have discomfort for a week and then boom- 15 out of 10 pain. Not one doctor or specialist can tell me why it would come & go. They’ve tried to get me into Mayo with no success.
Did you end up going to Mayo or Netherlands? Were they able to help?
Has anyone experienced ACNES pain that reoccurs daily at fairly predictable time? Mine is in the late afternoon and continues until I sleep. It does not appear to be related to eating/not eating?
Echoing many of the posts I have read on here, it is very difficult to find a physician that has ever heard of ACNES
Thanks
Hi @jimpain, Welcome to Connect. While we wait for other members who may have some thoughts or suggestions for you, I thought I would share this article from Mayo Clinic on the topic that you may find helpful.
-- Chronic Abdominal Wall Pain: A Common Yet Overlooked Etiology of Chronic Abdominal Pain: https://www.mayoclinicproceedings.org/article/S0025-6196(18)30852-8/fulltext
Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?
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1 ReactionThanks John- I think I have seen that article but I will take a look. I have a winter home in Phoenix and have asked my docs there to refer me to Mayo PHX . None are Mayo affiliated ,none have heard of ACNES and all suggest I contact Mayo directly. I have. No success.
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1 ReactionHi Jim, your doctors do not have to be Mayo-affiliated to refer you to Mayo Clinic. You can also self-refer here: http://mayocl.in/1mtmR63
It sounds like you may have already done that. Is that right?
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2 ReactionsI have not attempted to get an appointment online. I will try that link. I have made several phone calls and left voicemail messages to which I have not received a response. I did manage to speak to a medical assistant (call was transferred by make-appointment person) and requested an appointment with doctor for ACNES condition. I was asked what physician diagnosed that I have ACNES. I responded that was my guess as to my condition. Left phone number. Did not receive response.