ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Hi @jgroudan, I removed your personal email from your public post. I recommend that you connect with @saolson using the secure private message function. Here's how to send a private message: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

Thank you for being so helpful to another member. 🙂

Thank you for offering to speak with Dr. Gillespie on my behalf. It is not necessary. I now have a consultation appointment with Dr. Gillespie on 10/8 and am looking forward to it. THANK YOU very much!

I’m very happy for you. Good luck!

You keep suggesting Dr. Oxentenko's video, BUT SHE OFFERS NO HELP FOR PATIENTS FOR WHOM TRIGGER POINT INJECTIONS ARE A FAIL.
Her "reassurance" to patients is maddening, because it does nothing for severe neuropathic pain. After 3 years, I had three traumatic neuromas identified and removed from T7, T8, and T9 nerve branches. You are posting unhelpful information and (in my case), causing more delays to patients who need the help Mayo is not able to provide.

Julie, I could not agree more. After 4 trigger shots I was fortunate to find Dr Thomas Gillespie, great abdominal surgeon at St Joe’s in Phoenix who 2 weeks ago performed Robotic Laparoscopic surgery I.e.,, cut 3 cutaneous nerves and my ACNES is HISTORY. I am still sore of course but feel great again. Thank God for Dr Gillespie and his team. Dr Oxentako’s tape falls too short.

I agree. I have been in extreme pain for several years. Mayo performed TPI as well as at other Dr’s. I have undergone countless TPI’s, a bilateral transforamenal injection to my T9, endoscopy’s, endoscopic ultrasound at Abbott, undergone thoracic Prolozone injections, neural therapy injections and not a single thing has helped. Mayo has offered no help other than to take counseling to manage the pain. Easy to say when it’s not you in the hurt-bag. I don’t need counseling. I need a medical procedure as Dr. Sweetser says. Once a nerve becomes entrapped my experience is that it doesn’t suddenly become unentrapped. I have a appointment coming up with Dr. Gillespie in Phoenix. Look at some earlier posts for more information

Sounds like ACNES. IF so after several needle point shots you’ll need surgery. Very few doctors in the United States perform this. Dr Thomas Gillespie at St Joe’s in Phoenix does it Robotic Laparoscopically. He and his team are amazing!

@jgroudan: Thank you so much for posting. You've done what Mayo will not do, which is to offer hope to A.C.N.E.S. sufferers! Yay for you and for Dr. Thomas Gillespie @ St Joe's in Phoenix!

The pain has been with me since 2014. I went to my primary for the first year and my first visit to Mayo was in 2015. At the time I had never hear of AWP nor ACNES. Understandably, they performed a multitude of tests on my digestive system all of which came back negative. That was the first time I was told I might benefit from “counseling” for the pain. I was devastated. In the ensuing years the pain worsened and consumed my days while I was and am working full-time. Countless procedures since then including 6-7 TPI’s, a positive Carnett test by MNGI Digestive Health, a endoscopic ultrasound by Abbott, and many many more. I am going to see Dr. Gillespie based upon jgroudan and visits with Dr. Gillespie’s MA. I recognize that I may not be a candidate. I hope that he determines that I am and that his procedure helps. After the years of chronic upper abdominal pain that becomes unbearable every day I have everything to gain and nothing to lose. I will let you know.

I wish you God speed. I am feeling wondeful. Had me follow up with Dr Gillespie today and I am doing GREAT! Not to suffer with this pain any more is a miracle!!