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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 am in Virginia and I have a 10 yr that was diagnosed with ACNES syndrome several months ago. His pediatrician diagnosed him, and has recommended ibuprofen and heating pads which aren't offering a lot of relief. The pediatrician mentioned injections but doesn't know where to send him for it. There are pain clinics in my area but they don't treat kids. The only place I could find online that treats ACNES in children is the children's hospital in Boston. I'm just trying to see if anyone out there has any information or advice on where he could be treated in Virginia. I am willing to go out of state but would really prefer something local. Thank you.
I was cured of horrible ACNES on 9/2/21 by Dr Thomas Gillespie at St Joseph’s Medical Center in Phoenix. He severed my T8 T 9 and T10 abdominal nerves by performing a Robotic Laparoscopic procedure on me. Went home same day. To qualify one need to visit a pain management center and get a trigger point injection(s) in the affected area. It is only a very temporary fix but it will verify that it is ACNES. Any surgeon will most likely require this done before a procedure/surgery is performed.
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1 ReactionThank you.
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1 ReactionHello,
Just stumbled on this post because I am trying to find a physician to help a friend that has FINALLY been diagnosed with ACNES. She is suffering a great deal - may I ask who you finally ended up seeing that listened to you? Thank You!
Dr Thomas Gillespie, surgeon at st Joseph’s Medical Center in Phoenix cured me of ACNES via robotic laparoscopically. Truly a miracle. I’d be happy to explain . You may contact me if you’d like to get details. He has cured other from this site . Jeff
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1 ReactionHi Jeff @jgroudan - you'll notice that we removed your email address. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.
I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.
There is a doctor in Baltimore. Don’t believe it’s laparoscopic.
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2 ReactionsWhere is the secure link? Do not see it.
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1 ReactionHow to send a private message:
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Hi Jeff -
THANK YOU for responding. If it’s ok with you, I will pass your email along to my friend (the patient) so she can email you directly. Her name is Laura - thank you for sharing this info and giving us some hope - much appreciated! Christi