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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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There is nothing scary about it. You check into St Joseph’s Medical Center in the morning and go home in the afternoon cured. Actual procedure is only about 30 minutes with almost no downtime. If you would like to talk further about it send me your contact information in the private messaging and I’d be happy to explain everything. Jeff
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2 ReactionsWas not RFA. The affected nerves are cut eliminating future pain. Had it done 9/21. Dr Gillespie and his staff are wonderful.
@jgroudan I don't see on your homepage a link to send you a private message. I would like to know more about your surgery. Do you know how to send PM through this group? Thank you.
It would be a worthwhile life changing trip.
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1 ReactionNo, I did not. I am just starting to look into it, and was wondering how Victoria’s treatment went
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2 Reactions@jgroudan
I would like to send you a PM and hear your comments on the surgery and the doctor's protocol to proceed to surgery, if you know. I can't figure out the way to send you a PM from your homepage as is described in the Help section. Do you know how? You could send me a PM and I could reply? Thank youjgroudan I would like to send you a PM and hear your comments on the surgery and the doctor's protocol to proceed to surgery, if you know. I can't figure out the way to send you a PM from your homepage as is described in the Help section. Do you know how? You could send me a PM and I could reply? Thank you.
Ask the Mayo Mentor. He/She should be able to help.
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1 ReactionI noticed that you wished to send a private message to @jgroudan. As a new member, you will be able to send private messages in a few days. There is a brief period where new members do not have the ability to send a PM. We do this to deter spammers and keep the community safe. You can, however, receive private messages from established members like @jgroudan should they choose to PM you.
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2 Reactions@vlvhvlvh I hope you are feeling better. I am an ACNES sufferer. Did you have the radio frequency severing of the nerves in Gainsville, FL? If so, would you please tell me how you're doing? I see my pain management physician on Monday 3/20, and I think that he is going to discuss doing this for me. I'd appreciate any input. Thank you.
Hello @benacnes... I hope you are feeling better! Did you see Dr. Gillespie, and how are is your ACNES pain now? I am considering going to him. Four years with ACNES...tests, shots, trial of implantable stimulator... still in chronic pain. I welcome your input.