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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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@jimpain
I have a gut pain, I call it an aching feeling. My pain is from my xiphoid down to pelvis. It’s down the middle though. My pain is now all the time.
What is your pain like and have you tried a pain mgt dept at a hospital. A large teaching hospital should have one. Usually they try a nerve block first.
Thanks for response. Mine is right of centerline and radiates as it progresses through day to other areas in right side below rib/ above pelvis. I describe it as severe soreness; a bit like a burning. Multiple GI workups indicate source is not
inside GI tract.
I was referred to a pain mgt center. They considered the pain to deep for trigger point injections- prescribed pain medication which comes with its own problems and is not a solution.
Have you tried a nerve block procedure? Thoughts?
I'm hoping to get into Mayo or one of the other hospital systems here to discuss that procedure.
I suffered terribly for almost a year before a very experienced gall bladder surgeon diagnosed me with ACNES. He directed me to a pain institute where I had several trigger point shots. Only the first shot temporarily helped. I researched and found Dr Thomas Gillespie at St Joseph’s Medical Center in Phoenix who performed robotic laparoscopic surgery on me cutting my T8, T9 and T10 abdominal nerves. Went home that day CURED of ACNES. He does take new patients.
Many thanks for response. I'm trying to get appointment with Dr Gillespie. I hear great things about him.
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1 ReactionDr. Gillespie performed the procedure on me. Life changing! I've had zero nerve pain since I awoke from the surgery. I had the surgery April 28th of this year.
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1 ReactionDr Thomas Gillespie at Phoenix Medical Center is very familiar with ACNES and performs outpatient robotic laparoscopic surgery on the effected abdominal nerves. I went home same day cured.
So happy to hear the surgery worked. My daughter, 17 years old, has been suffering this for 3 years - since she was only 14! She has had three nurectomies but her pain keeps coming back.
How are you doing from the surgery? How long has it been?
Thanks much!
Jasmine.
That is amazing! So happy to hear that the surgery worked. Was this the first time since you had surgery for this condition? How are you doing now?
Hi Jasmine,
My ACNES procedure was on 9/2/2021. Totally cured after 9 months of excruciating pain. I was an outpatient. Procedure was done robotically laparoscopically cutting 3 entrapped nerves.
My prayers for your daughter.
Sincerely,
Jeff Groudan Gilbert AZ
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2 ReactionsIt is Abdominal Cutaneous Nerve Entrapment Syndrome Not Anterior.