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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.

saolson | @saolson | Sep 11, 2021
In reply to @jgroudan "The physician that performed a Robotic Laparoscopic Neurectamy on me on 9/2/21 is Dr. Thomas Gillespie..." + (show)
@jgroudan

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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Thank you so much. You have given me hope that I can one day return to a normal life. So far no Dr. has diagnosed me as having ACNES but I have all the symptoms. Because I live in MN I am hopeful that Mayo in Rochester can perform the surgery. If not I will most certainly be contacting Dr. Gillespie. Once again, thank you!

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2 replies
jgroudan | @jgroudan | Sep 11, 2021
In reply to @saolson "Thank you so much. You have given me hope that I can one day return to..." + (show)
@saolson

Thank you so much. You have given me hope that I can one day return to a normal life. So far no Dr. has diagnosed me as having ACNES but I have all the symptoms. Because I live in MN I am hopeful that Mayo in Rochester can perform the surgery. If not I will most certainly be contacting Dr. Gillespie. Once again, thank you!

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You need to take the Carnett test and receive trigger point shots which will prove that it is ACNES. To be cured you must be proactive.

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1 reply
saolson | @saolson | Sep 11, 2021
In reply to @jgroudan "You need to take the Carnett test and receive trigger point shots which will prove that..." + (show)
@jgroudan

You need to take the Carnett test and receive trigger point shots which will prove that it is ACNES. To be cured you must be proactive.

Jump to this post

Yes, I have taken a Carnett test at MNGI and have undergone numerous trigger point injections including with anesthetic and a corticosteroid.

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1 reply
saolson | @saolson | Sep 11, 2021

That seems odd given that Mayo gastroenterologist, Dr. Seth Sweetser speaks about the surgery in his paper on AWP being caused by ACNES. I could be much mistaken though.

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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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Almost all doctors tell you that surgery is next step but none of them actually do the surgery. Dr Gillespie of St Joes in Phoenix performs robotic laparoscopic surgery on ACNES. He is amazing! I am cured 😃

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jgroudan | @jgroudan | Sep 11, 2021
In reply to @saolson "Yes, I have taken a Carnett test at MNGI and have undergone numerous trigger point injections..." + (show)
@saolson

Yes, I have taken a Carnett test at MNGI and have undergone numerous trigger point injections including with anesthetic and a corticosteroid.

Jump to this post

As I did. Next is to find a surgeon who knows how to operate on it. Fortunately I found Dr Gillespie at St Joes I Phoenix.

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jgroudan | @jgroudan | Sep 11, 2021
In reply to @saolson "That seems odd given that Mayo gastroenterologist, Dr. Seth Sweetser speaks about the surgery in his..." + (show)
@saolson

That seems odd given that Mayo gastroenterologist, Dr. Seth Sweetser speaks about the surgery in his paper on AWP being caused by ACNES. I could be much mistaken though.

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I tried Mayo I Phoenix and Rochester and got nowhere.

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saolson | @saolson | Sep 11, 2021

Looks likely that my wife and I will be making a trip to Phoenix. With Mayo being at the top of the food-chain when it comes to health care it surprises me if they don’t have the expertise. Mayo performed a trigger-point injection on me in July of ‘20. It had no effect. In the next few weeks I will be back there as the next step in this 7-year journey.

REPLY
jgroudan | @jgroudan | Sep 12, 2021
In reply to @saolson "Thank you so much. You have given me hope that I can one day return to..." + (show)
@saolson

Thank you so much. You have given me hope that I can one day return to a normal life. So far no Dr. has diagnosed me as having ACNES but I have all the symptoms. Because I live in MN I am hopeful that Mayo in Rochester can perform the surgery. If not I will most certainly be contacting Dr. Gillespie. Once again, thank you!

Jump to this post

You’re welcome! Best of luck 🤞

REPLY
jgroudan | @jgroudan | Sep 12, 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.

Jump to this post

Dr Gillespie @St Joe’s in Phoenix performed Robotic Laparoscopic surgery on 3 of my entrapped nerves (ACNES) 10 days ago. Went home same day. Little sore but CURED and back to my old self. Nothing short of a miracle. Thank God for Dr Gillespie!!

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