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.

wlong | @wlong | Sep 9, 2021
In reply to @jgroudan "Hi Erika, After suffering the past 2 years I finally found a wonderful surgeon who this..." + (show)
@jgroudan

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 I just posted on here 6 minutes ago. I believe my wife has A.C.N.E.S as well. Did the doctor who performed your surgery also diagnose you as well. We go to ER’s with no luck, no diagnosis and always a discharge. They tell her she is fine. Should we consider going to this hospital ourselves to finally get her the help she needs. We live in California

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1 reply
jgroudan | @jgroudan | Sep 9, 2021
In reply to @wlong "My name is William I just posted on here 6 minutes ago. I believe my wife..." + (show)
@wlong

My name is William I just posted on here 6 minutes ago. I believe my wife has A.C.N.E.S as well. Did the doctor who performed your surgery also diagnose you as well. We go to ER’s with no luck, no diagnosis and always a discharge. They tell her she is fine. Should we consider going to this hospital ourselves to finally get her the help she needs. We live in California

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Hi William,
I would be happy to help Erika and you, if possible. Knowing the urgency in lieu of corresponding please feel free to send me a private message for contact information*. Jeff Groudan

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 9, 2021
In reply to @jgroudan "Hi William, I would be happy to help Erika and you, if possible. Knowing the urgency..." + (show)
@jgroudan

Hi William,
I would be happy to help Erika and you, if possible. Knowing the urgency in lieu of corresponding please feel free to send me a private message for contact information*. Jeff Groudan

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Hello William @wlong, I would like to add my welcome to Connect along with @jgroudan and other members. Jeff you will notice that we removed your phone number from your reply to William to protect your privacy since Connect is a public forum that anyone with Internet can view your post. Members can share contact information easily using the send private message function of Connect. See How to Send a Private Message -- https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

William can you follow up with Jeff by private message? Please use the Contact a moderator form if have any questions or problems exchanging information - https://connect.mayoclinic.org/contact-a-community-moderator

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1 reply
wlong | @wlong | Sep 9, 2021
In reply to @johnbishop "Hello William @wlong, I would like to add my welcome to Connect along with @jgroudan and..." + (show)
@johnbishop

Hello William @wlong, I would like to add my welcome to Connect along with @jgroudan and other members. Jeff you will notice that we removed your phone number from your reply to William to protect your privacy since Connect is a public forum that anyone with Internet can view your post. Members can share contact information easily using the send private message function of Connect. See How to Send a Private Message -- https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

William can you follow up with Jeff by private message? Please use the Contact a moderator form if have any questions or problems exchanging information - https://connect.mayoclinic.org/contact-a-community-moderator

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Thank you for the information

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saolson | @saolson | Sep 10, 2021
In reply to @patsy2222 "which doctor did you see at the may clinic? thanks" + (show)
@patsy2222

which doctor did you see at the may clinic? thanks

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How can I contact the Dr. that performed the surgery? I, too have gone through every strategy mentioned here. Not a single Dr. has had ever heard of AWP or ACNES. A Mayo Dr. named Seth Sweetser wrote a research paper on AWP caused by ACNES. In it he states that if trigger point injections do not adequately reduce the pain level surgery is the best option.

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4 replies
Moderator
Amanda Roe | @amandajro | Sep 11, 2021
In reply to @saolson "How can I contact the Dr. that performed the surgery? I, too have gone through every..." + (show)
@saolson

How can I contact the Dr. that performed the surgery? I, too have gone through every strategy mentioned here. Not a single Dr. has had ever heard of AWP or ACNES. A Mayo Dr. named Seth Sweetser wrote a research paper on AWP caused by ACNES. In it he states that if trigger point injections do not adequately reduce the pain level surgery is the best option.

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Hello @saolson and welcome to Mayo Clinic Connect. I'd like to see if I can help with regard to your question on contacting the doctor that performed that surgery. Which doctor are you interested in contacting?

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1 reply
jgroudan | @jgroudan | Sep 11, 2021
In reply to @saolson "How can I contact the Dr. that performed the surgery? I, too have gone through every..." + (show)
@saolson

How can I contact the Dr. that performed the surgery? I, too have gone through every strategy mentioned here. Not a single Dr. has had ever heard of AWP or ACNES. A Mayo Dr. named Seth Sweetser wrote a research paper on AWP caused by ACNES. In it he states that if trigger point injections do not adequately reduce the pain level surgery is the best option.

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The physician that performed a Robotic Laparoscopic Neurectamy on me on 9/2/21 is Dr. Thomas Gillespie of St Josephs Hospital in Phoenix. He cut 3 entrapped nerves. Went home same day. Except for slight soreness from the cutting I am ACNES free after suffering for way too long. Thank God for Dr. Gillespie and his staff.

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1 reply
saolson | @saolson | Sep 11, 2021
In reply to @amandajro "Hello @saolson and welcome to Mayo Clinic Connect. I'd like to see if I can help..." + (show)
@amandajro

Hello @saolson and welcome to Mayo Clinic Connect. I'd like to see if I can help with regard to your question on contacting the doctor that performed that surgery. Which doctor are you interested in contacting?

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The Dr. at Mayo that assumed my case is Dr. Kane. However, I had my primary Dr. sent a referral to Mayo attention Dr. Seth Sweetser because it was Dr. Sweetser that wrote the paper on AWP and ACNES. In the paper Dr. Sweetser writes that in intractable cases where multiple trigger point injections in addition to other conservative strategies have failed to reduce the pain they provide surgery. The procedure consists of identifying the problem nerve(s) and making a 5-cm incision and excise the nerve. I hope to be able to see Dr. Sweetser

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1 reply
Moderator
Amanda Roe | @amandajro | Sep 11, 2021
In reply to @saolson "The Dr. at Mayo that assumed my case is Dr. Kane. However, I had my primary..." + (show)
@saolson

The Dr. at Mayo that assumed my case is Dr. Kane. However, I had my primary Dr. sent a referral to Mayo attention Dr. Seth Sweetser because it was Dr. Sweetser that wrote the paper on AWP and ACNES. In the paper Dr. Sweetser writes that in intractable cases where multiple trigger point injections in addition to other conservative strategies have failed to reduce the pain they provide surgery. The procedure consists of identifying the problem nerve(s) and making a 5-cm incision and excise the nerve. I hope to be able to see Dr. Sweetser

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@saolson you may use this link to request an appointment: http://mayocl.in/1mtmR63

However, if you are already in touch with the Gastroenterology Department, you may wish to reach out to them to discuss your options with Dr. Sweetser.

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2 replies
saolson | @saolson | Sep 11, 2021
In reply to @amandajro "@saolson you may use this link to request an appointment: http://mayocl.in/1mtmR63 However, if you are already..." + (show)
@amandajro

@saolson you may use this link to request an appointment: http://mayocl.in/1mtmR63

However, if you are already in touch with the Gastroenterology Department, you may wish to reach out to them to discuss your options with Dr. Sweetser.

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Amanda, Thank you very much! my primary has sent a referral to Mayo with attention to Dr. Sweetser despite that Mayo has assigned Dr. Kane to my case. I await Mayo to contact me in the next few days. I am not qualified to diagnose anything. However, my symptoms are precisely what is described for ACNES. Also, I have undergone numerous endoscopy’s in addition to numerous trigger point injections and more. To date nothing has helped. Thank you for doing what you can to help.

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