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Has anyone been diagnosed with Abdominal Wall Pain

Posted by rufus444 @smiles444, Dec 15, 2017

Starting on May 1, 2017, I began having abdominal pain that wraps around to my left back. The first time it happened, I went to the emergency room because I thought I might have an apendicitis. The hospital did a CT scan of my abdomen, everything looked okay. I went to the emergency room several times over the summer with excruciating abdominal and back pain. I had a hida scan done, a colonoscopy and an endoscopy and CT and ultrasound scans of my abdomen. Everything looked normal. In September of this year, a doctor at Mayo felt the area on my abdomen and did a Carnett's test. He suggested it could be abdominal wall pain. I have had two steroid injections and I am still having pain in the same area. Has anyone out there had this type of diagnosis and still having pain?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

jgroudan | @jgroudan | Apr 14, 2023
In reply to @rritam "Hi rufus444. The Mayo Clinic Proceedings Feb 2019 posted on A.C.N.E.S. It's amazing that physicians in..." + (show)
@rritam

Hi rufus444. The Mayo Clinic Proceedings Feb 2019 posted on A.C.N.E.S. It's amazing that physicians in the U.S. don't get this, because (as you have already found out) the condition has resulted in an enormous waste of medical resources and caused much suffering to many patients, including many others posting on this site in the past. One obvious problem is that gastroenterology is the wrong speciality, hence we're all left in limbo when gastroenterologists give up on us.

Here are some case histories and reports to consider. The Mayo report is last because when I asked Mayo's Dr. Sweetser for help, I was sent me a form letter of denial. (Dr. Boelens' report is the most comprehensive)
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Protracted diagnosis of ACNES: a costly exercise. S.J. Dancer, S.G. Macpherson, A.C. de Beaux. Journal of Surgical Case Reports, 2018;9, 1-3

Chronic abdominal wall pain--A diagnostic challenge for the surgeon. Rolv-Ole Lindsetmo, M.D., M.P.H., Jonah Stulberg, M.P.H. The American Journal of Surgery, (2009) 198, 129-134

A Double-Blind, Randomized, Controlled Trial on Surgery for Chronic Abdominal Pain Due to Anterior Cutaneous Nerve Entrapment Syndrome. Oliver B. Boelens, MD, Tijmen van Assen, MD, Saskia Houterman, Marc R. Scheltinga, MD, Rudi M. Roumen, MD. Annals of Surgery Vol 257, Number 5, May 2013 845-849

Difficult differentiation of a somatic symptom disorder from anterior cutaneous nerve entrapment syndrome (ACNES): A case report. Narifumi Yokoyama, Ryousuke Shiraki, Takashi Watanabe, Makiko Shiinoki, Michihiro Nin, Taro Shimizu, Norio Yasui-Furukori and Kazutaka Shimoda. PMC Psychiatry (2019)19:394

Abdominal Cutaneous Nerve Entrapment Syndrome. Sheila Clark FCAI, Saravanakumar Kanakarajan MD FCPS FRCA FFPMRCA. Continuing Education in Anaesthesia: Critical Care & Pain, Volume 15 Number 2 2015, 60-63.

Abdominal Wall Pain: A Common Clinical Problem. Seth Sweetser, MD. Mayo Clinic Proc, February 2019:94(2):347-355. https://doi.org/10.1016/jmayocp.2018.04.03
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I check in here occasionally to see if Mayo has helped anyone yet. Sorry I (and many of us) are still suffering.

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The Mayo site explains quite well how to identify ACNES but offers no way to cure this horribly painful syndrome. Maybe it was a miracle but I found a surgeon who not only is curing sufferers but doing via Robotic Laparoscopically. I had this procedure 9/22 and walked out of the hospital in the afternoon cured. The brilliant passionate surgeon is Dr Thomas Gillespie at St Joseph's Medical Center in Phoenix. Quite a few on this site have been cured of ACNES by him. Jeff

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nicolemramirez | @nicolemramirez | Mar 14, 2024
In reply to @pagray24 "@smiles444 Hi, I am going on 5.5 years since my first sudden onset of upper left..." + (show)
@pagray24

@smiles444
Hi, I am going on 5.5 years since my first sudden onset of upper left quadrant abdominal pain. I have had many diagnoses and yet it is still a mystery and truly excruciating at times. My pain is 8-9 days out of 10. How often is yours? Can you walk normally? What have you tried that works? I have seen 18-20 specialist. I use heat, a TENs, meditation, pain meds, lying still on a 45 degree angle and a number of other meds. Does the pain cause you headaches and nausea when it gets severe? It has been a 5 year science experiment and imaging studies of all types to still not know what or why. Abdominal wall pain, visceral pain, chest wall pain, chronic pain syndrome, etc. It has been labeled all of these. I have received easily 100 injections in my upper abdomen and wrapping around to my back. So, I feel your pain.

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Hi my boyfriend has something similar. He’s ongoing ten years though and has been medically released from the army due to this. He can’t work. Since I’ve been with him I’ve personally gone to so many doctors appts with him from his primary to gi to psychiatrist and he’s gone to the ER with me 6 times in the last year. He’s been told he has a hernia but have never said let’s do something about it. He can barely eat, everything makes him either have excruciating pain or immediately throw up. It’s so awful to see and I can’t stand to see him suffer anymore. He’ll be perfectly fine and I’ll think he’s ok and then he’s dying cause he ate some soup. He’s a veteran and trying to get a referral out is so dang hard for no reason. His only relief is a burning hot tub or hot pack but he made it so hot this last time that he kept burning his back ( not even noticing cause the stomach pain) so his back is basically one big scab now. He’s always told he has cyclical vomiting syndrome or hypermesis from smoking ( he only smokes felts to relieve the pain!) it makes me so mad. His gi didn’t think he has cyclical and the next step is hopefully a pill cam 😢 where can we get pain medication? Nobody wants to give him anything to help!

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naadia | @naadia | Mar 12 1:14am

So grateful for the information I’ve received in these chats. After two long years of daily pain, I’m scheduled for surgery next week for a neurectomy. I am so excited to be rid of this!!

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anniesezu812 | @anniesezu812 | Apr 12 9:08pm

Hello,
I responded to a post somewhere here..don't see it... I have been suffering from suspected ACNES due laparoscopy in 2016. Clev Clinic Dr only person in South Florida who seems knowledgeable of it but can't help further.
I had a Spinal Cord Stimulator inplant 6 months ago after developing severe back pain , within 4 weeks my Nerve pain was excruciatingly to point I became bedridden mostly. I switched it off.
Drs still refuse to accept it exacerbated my pain but I'm just post a Nerve Conduction Study ( shot up with strong electrical current) most horrendous pain of my life. Took numerous days to recover. Preparing my records for Dr Gillespie. This condition is truly destroying my body. Am almost 6 months on a soft/ liquid diet/ can't tolerate normal diet due severity of digestive pain.
It would be nice if "posters " report back if they get help and what worked. I for one would be very interested to know if and how people get resolution.
This is a devastating condition.

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