ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Sorry about spell check, AIP is accute intermittent porphyria.

@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?

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.

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?

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?

@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.

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.

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

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!

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