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Has anyone been diagnosed with Abdominal Wall Pain
Chronic Pain | Last Active: Mar 14 12:16am | Replies (282)Comment receiving replies
Hi ken82, glad to hear that's your experience. I have dx of A.C.N.E.S. confirmed by Univ Washington pain clinic. After reading Dr. Sweetser's article, I messaged him, respectfully requesting a referral for treatment (as he described in his report, "Surgical treatment with neurectomy is available for medically intractable abdominal wall pain"). I got a form letter of denial back from Mayo's Gastroenterology dept with no referral and no help. Baffling.
Replies to "Hi ken82, glad to hear that's your experience. I have dx of A.C.N.E.S. confirmed by Univ..."
I was also turned away by Mayo Clinic but it was the neurology dept. I have Tarlov cysts pushing on numerous nerves in the sacral area. I called and asked if there was a provider that treats them. They told me they have done a few of the surgeries in the past but no longer do them. I also asked if any of the neurologists and/or neurosurgeons would be able to recommend what direction I should go or possibly a referral to another provider that has experience with them. There was no answer for me. I'm not badmouthing Mayo Clinic by any means because I did see Dr. Fealy back in 2003 (before I was diagnosed). He was fantastic and showed initiative in figuring out what was going on but I never got to follow up with him. I was very disappointed to find out that he retired.
Mayo gets a lot of requests, and it isn't that easy to have them accept you for treatment. If I were in your shoes, I would try again and at the same time have a referral letter maybe by someone that treated you with that diagnosis, and request a second opinion about the diagnosis and treatment options. Best wishes!
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That is what I got from Mayo after they screwed up my surgery which caused a spinal leak that led to arachnoiditis.