ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Posted by leet3415 @leet3415, Mar 28, 2019

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?**

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

Sorry about spell check, AIP is accute intermittent porphyria.

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@patsy2222

He had a shot in his abdomen last Wednesday. Do not want to use pain medication……want to do whatever it takes to resolve the problem

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@patsy2222 the member you had wished to connect with is no longer receiving email notifications so I want to bring in a few other members who may be able to share some of their experiences to aid you @rt061069 @sawah3 and @jenniferhunter.

Can you share your feelings on pain medication for reference with other members who may join the conversation?

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@rritam

Almost 3 years in severe pain with NO HELP. I finally diagnosed myself! Twenty three (23) doctors claimed they "never heard of A.C.N.E.S." so my stack of medical literature was ignored, as was my horrendous pain. Can't sit for nearly 3 years. I repeatedly posted on this site and others, no response to A.C.N.E.S, and NOW you're saying it's COMMON? Central sensitization has worsened the pain. I had all the hallmarks: prior abdominal surgeries, positive Carnett's, and trigger point injections but only temporary relief..21 stupid prescriptions that did nothing. This month I FINALLY FOUND A PHYSICIAN WHO LISTENED, and I underwent resection of anterior cutaneous nerve branches at T7, T8, and T9, with pathology reporting three traumatic neuromas. Gee, I'm SOOOO glad you figured it out. Congratulations.

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How are you doing after the neuroma removal? I’m at 7 months and my pain doctor diagnosed neuroma/acnes but won’t offer even an injection, only a dorsal root ganglion implant! I just made an appointment with a plastic surgeon who does neuroma removal in another state… no one in my area does it! Was the operation worth it? I can’t sit for more than 15 min, they think it’s the iliohypogastric nerve.

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@mizerykat

How are you doing after the neuroma removal? I’m at 7 months and my pain doctor diagnosed neuroma/acnes but won’t offer even an injection, only a dorsal root ganglion implant! I just made an appointment with a plastic surgeon who does neuroma removal in another state… no one in my area does it! Was the operation worth it? I can’t sit for more than 15 min, they think it’s the iliohypogastric nerve.

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Hello @mizerykat, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. While we wait for @rritam to share their experience on the neuroma removal I thought you might want to check out the following discussion since you mentioned the iliohypogastric nerve.

Neurectomy: https://connect.mayoclinic.org/discussion/neurectomy/

You mentioned you have an appointment with a plastic surgeon who does the neuroma removal in another state. Have you discussed their experience and how many of the surgeries they've done and if there are any related complications?

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Many, its a highly specialized field. There are undoubtedly possible complications, but reread the posts on here. Neuromas or entrapments cause so much suffering and there are so few doctors out there who can or are willing to help. Pain management doctors like to throw pills at you, which never correct the issue; I thought a neurologist would be a good step but they only deal with brain/spine. Once all conservative measures have been exhausted there’s really no good option left for you. Reread rritams posts, how she suffered for so long with no help. May I ask what your experience is with this issue?

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@mizerykat

Many, its a highly specialized field. There are undoubtedly possible complications, but reread the posts on here. Neuromas or entrapments cause so much suffering and there are so few doctors out there who can or are willing to help. Pain management doctors like to throw pills at you, which never correct the issue; I thought a neurologist would be a good step but they only deal with brain/spine. Once all conservative measures have been exhausted there’s really no good option left for you. Reread rritams posts, how she suffered for so long with no help. May I ask what your experience is with this issue?

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@mizerykat was your question for me? Sometimes it's hard to know who the question is for unless you click the reply button under a post. You can also tag a member using their Connect @ member name which will send them an email notification,. If your question was meant for me, I have no experience with ACNES other than reading about it. I have a few autoimmune conditions including small fiber peripheral neuropathy diagnosed by a Mayo neurologist but there is no treatment offered because I only have numbness.

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I kind of understand what your going thru. I have problems with my thoracic spine. I cough so bad in the morning from allergies that my ribs hurt then my diaphragm spasms, then I get the vagus nerve impingement either in my spine or diaphragm. This nerve goes to your digestive system and causes a lot of pain. Approx. 9 years ago I asked the doctor I had at the time which nerve controls the gut which he turn said it was the vagus nerve. Physical therapy did not do any good. What I have had success in my four instances the past 12 years was a hell of a good massage therapist do deep tissue massage on my back. I need it done right now, but because of COVID I doubt she was working. I don’t understand all of your terminology here but I can relate to your experience. Won’t take all of those meds because of side effects. The nerve is entrapped somewhere. Hope this is helpful. A neurosurgeon indicated to fix my thoracic spine discs he would have to open up my chest like heart surgery. He couldn’t go in from the back. No point in going to my neurologist, he seems to be more interested in blood flow to the brain. However they do nerve conduction test on extremetis.

Good luck to all of you in your quest.

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@sacker33

Has anyone found a doctor in the Chicago area that understands and treats ACNES?

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Not in Chicago but in Phoenix. Dr. Thomas Gillespie at St. Joe's.

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@erikas

@sackerk Welcome to Mayo Clinic Connect, a place to give and get support.

@sackerk, You are wondering how to be referred or how to get in touch with Netherlands clinic.

May I ask more about the Netherlands Clinic? What is the name and location of the clinic?

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Hi Erika, After suffering the past 2 years I finally found a wonderful surgeon who this past Thursday operated on me to rid me of ACNES. It was done Robotic Laparoscopically severing 3 nerves. The Doctor is Thomas Gillespie of St. Joe's in Phoenix. Thank God and Thank Dr Gillespie and his entire staff. I am now finally pain free!

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My name is William and my wife suffers from chronic abdominal pain. We have been to ER’s like crazy and when I say a lot I mean easily 300-400 times in the last 4 years. Doctors do nothing run the usual tests and discharge her all while she continues to suffer from pain in the stomach coming from the right upper quadrant. Thru my own research I believe she has A.C.N.E.S What hospital or doctor do you have to go to where they can investigate her abdominal wall and give her this diagnosis. CT scans, MRI’s Ultrasounds, Endoscopies all come up negative. She has nausea and vomiting with this sometimes as well. Any help would be appreciated. We live in the Northern California area

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