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ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome
Chronic Pain | Last Active: Oct 11 12:56pm | Replies (324)Comment receiving replies
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!
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@anna0215 back here again. I did end up finding a pain clinic. Dr Lynch in Scottsdale AZ is an expert on it. They gave me trigger point injections first. Those do not work for ACNES Dr Lynch told me. So I had a couple of ablations. A lot of pain clinics I found are hesitant or don't do ablations on the tummy area. I can say I got relief from spasms for about a year. But recently, it is rearing up again. And I moved 2000 miles away. So now I have to find a new doc who knows about this. If I go to Mayo, if they take my insurance, I probably have to drive out of state. Not sure if we have one here, now I will be researching again. gaba never seems to help me much, and it made me suicidal. I hope you had some luck and found some help.
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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.