1. < Chronic Pain

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.

jgroudan | @jgroudan | Sep 17, 2022

I had the surgery by Dr Thomas Gillespie at St Joseph’s Medical Center in Phoenix September of ‘01. Cut my T8, T9 &T10 abdominal nerve via robotic laparoscopic surgery. Went home same day cured.

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owenst | @owenst | Oct 12, 2022

My mother is 78 and has seen numerous specialist for chronic abdominal pain. The neurologist indicated this could be ACNES. She has been on nortriptyline with little help. She cannot take allot of meds. She cannot not walk far, sit or bend. Only able to lay on her bed in a reclining position. Heat helps and when she has this horrible pain Bentyl ( antispasmodic) helps. Doctors are bewildered. Has any had this or know someone. Thank you

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 13, 2022
In reply to @owenst "My mother is 78 and has seen numerous specialist for chronic abdominal pain. The neurologist indicated..." + (show)
@owenst

My mother is 78 and has seen numerous specialist for chronic abdominal pain. The neurologist indicated this could be ACNES. She has been on nortriptyline with little help. She cannot take allot of meds. She cannot not walk far, sit or bend. Only able to lay on her bed in a reclining position. Heat helps and when she has this horrible pain Bentyl ( antispasmodic) helps. Doctors are bewildered. Has any had this or know someone. Thank you

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Welcome, @owenst. To help you connect with other members and to see helpful posts related to your question, I moved your message to this existing discussion:
- ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome: https://connect.mayoclinic.org/discussion/acnes-abdominal-cutaneous-nerve-entrapment-syndrome/

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Moderator
Amanda Roe | @amandajro | Oct 13, 2022
In reply to @owenst "My mother is 78 and has seen numerous specialist for chronic abdominal pain. The neurologist indicated..." + (show)
@owenst

My mother is 78 and has seen numerous specialist for chronic abdominal pain. The neurologist indicated this could be ACNES. She has been on nortriptyline with little help. She cannot take allot of meds. She cannot not walk far, sit or bend. Only able to lay on her bed in a reclining position. Heat helps and when she has this horrible pain Bentyl ( antispasmodic) helps. Doctors are bewildered. Has any had this or know someone. Thank you

Jump to this post

Hello @owenst. I would like to add my welcome along with @colleenyoung. I am so sorry to hear your mother is going through this. It is great of you to join Connect in order to support her.

Members @jgroudan @jimpain and @benacnes have all shared their experience in this discussion and may be able to come back in to share more with you.

Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic for your mother?

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1 reply
owenst | @owenst | Oct 13, 2022
In reply to @amandajro "Hello @owenst. I would like to add my welcome along with @colleenyoung. I am so sorry..." + (show)
@amandajro

Hello @owenst. I would like to add my welcome along with @colleenyoung. I am so sorry to hear your mother is going through this. It is great of you to join Connect in order to support her.

Members @jgroudan @jimpain and @benacnes have all shared their experience in this discussion and may be able to come back in to share more with you.

Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic for your mother?

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Thank you so much for responding. I have had to lay her seat back in the car and put in a foot stool in the car so I can get her to local Doctors. By the time we get half way home she is in tears. Mayo clinic is so far and Emory is the only other choice. I was going to ck to see if any physician there can help her. Thank you

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jgroudan | @jgroudan | Oct 13, 2022
In reply to @jgroudan "Who was your doctor - was it Dr Gillespie in Phoenix?" + (show)
@jgroudan

Who was your doctor - was it Dr Gillespie in Phoenix?

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Yes, it was Dr Thomas Gillespie @ St Joseph’s Medical Center in Phoenix.

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jgroudan | @jgroudan | Oct 14, 2022
In reply to @tphillipsmn12 "Hi. I have had ACNES in my sternum & left chest for over 2 years. This..." + (show)
@tphillipsmn12

Hi. I have had ACNES in my sternum & left chest for over 2 years. This is what I have learned so far with treatment that works for me: gabapentin medication, multiple cold laser therapy which lessens the pain events I have each week which I found at Mounds View Chiropractic clinic, Garden of Life CBD 800mg lotion. I have found there are no real specialists for ACNES. You will most likely get referred to a pain clinic. I went to a pain clinic & I felt their treatment was pretty radical with nerve blocks (had them didn’t work well), pain pumps (don’t want to be on narcotics) etc. this was the best balance I found that allows me to live a pretty normal life. I still have pain days but they aren’t as intense or last as long as they previously did.

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Dr Thomas Gillespie at St Joseph's Medical center in Phoenix does robotic laparoscopic surgery on ACNES. Cured me on 9/2/21.

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iiirenek | @iiirenek | Oct 17, 2022

Hello, I am posting for my father 57M. For over 16 years he has been dealing with chronic pain in his right mid-upper abdomen. Pain is severe, can be a 10/10 certain days. Causes insomnia and can be made worse from eating. He has had a gastric bypass with a supplemental surgery a few years later. He has had his appendix and gallbladder removed. Despite years of trips to different doctors all they did was prescribe painkillers and send him away. We were so excited when we found ACNES but even after 2 trigger point injections NOTHING. The injections did not even give temporary relief, they made no difference. Now, we are worried it may not even be ACNES. Perhaps it is MALS? If anyone can PLEASE let us know a possible diagnosis or referral to a doctor or surgeon in the NJ/NY area, it would be a godsend! Please respond if anything rings a bell!!!!!

REPLY
2 replies
grace29 | @grace29 | Oct 18, 2022
In reply to @iiirenek "Hello, I am posting for my father 57M. For over 16 years he has been dealing..." + (show)
@iiirenek

Hello, I am posting for my father 57M. For over 16 years he has been dealing with chronic pain in his right mid-upper abdomen. Pain is severe, can be a 10/10 certain days. Causes insomnia and can be made worse from eating. He has had a gastric bypass with a supplemental surgery a few years later. He has had his appendix and gallbladder removed. Despite years of trips to different doctors all they did was prescribe painkillers and send him away. We were so excited when we found ACNES but even after 2 trigger point injections NOTHING. The injections did not even give temporary relief, they made no difference. Now, we are worried it may not even be ACNES. Perhaps it is MALS? If anyone can PLEASE let us know a possible diagnosis or referral to a doctor or surgeon in the NJ/NY area, it would be a godsend! Please respond if anything rings a bell!!!!!

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My neurologist diagnosed me with abdominal migraines. I take Nurtec otd. Sublingual every other day. I’m not out of the woods but combined with my other meds I’m much improved. Put on weight again. I was getting very thin. Food was the devil.

REPLY
jgroudan | @jgroudan | Oct 19, 2022
In reply to @iiirenek "Hello, I am posting for my father 57M. For over 16 years he has been dealing..." + (show)
@iiirenek

Hello, I am posting for my father 57M. For over 16 years he has been dealing with chronic pain in his right mid-upper abdomen. Pain is severe, can be a 10/10 certain days. Causes insomnia and can be made worse from eating. He has had a gastric bypass with a supplemental surgery a few years later. He has had his appendix and gallbladder removed. Despite years of trips to different doctors all they did was prescribe painkillers and send him away. We were so excited when we found ACNES but even after 2 trigger point injections NOTHING. The injections did not even give temporary relief, they made no difference. Now, we are worried it may not even be ACNES. Perhaps it is MALS? If anyone can PLEASE let us know a possible diagnosis or referral to a doctor or surgeon in the NJ/NY area, it would be a godsend! Please respond if anything rings a bell!!!!!

Jump to this post

Dr Thomas Gillespie at St Joseph’s Medical Center in Phoenix does a robotic laparoscopic procedure which severs the effected nerves. Went home same day cured of horrible ACNES. He does take new out of state patients. JEFF

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