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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.

jgroudan | @jgroudan | Feb 20, 2023
In reply to @vlvhvlvh "Although this is done in a surgical center under under an ultrasound for guidance. If this..." + (show)
@vlvhvlvh

Although this is done in a surgical center under under an ultrasound for guidance. If this works, he will then just go ahead and sever the nerves (left and right side) with radio frequency.
Please pray for me during this procedure and that it all goes as planned. I have been in severe pain for so long. He said that why Opiates don't work for the pain is that it's nerve pain.
My procedure is scheduled for February 28th.
Thank you,
Victoria
I hope this helps others with this sort of pain.
God Bless 🙌

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Hi Victoria,
Please contact me before (asap) before proceeding. There is a more "modern" much safer procedure performed by Dr Gillespie in Phoenix - Robotic Laparoscopically. Go home cured same day. No nerve blocking necessary. Goes in and severs nerves causing the ACNES. He severed my T8, T9 and T10 and had my life back immediately. I sent you a private message.

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1 reply
vlvhvlvh | @vlvhvlvh | Feb 20, 2023
In reply to @lasirvent "I’m praying you get relief from this, it’s so exhausting." + (show)
@lasirvent

I’m praying you get relief from this, it’s so exhausting.

Jump to this post

Thank you! So very true. Can't live a normal life!

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vlvhvlvh | @vlvhvlvh | Feb 20, 2023
In reply to @jgroudan "Hi Victoria, Please contact me before (asap) before proceeding. There is a more "modern" much safer..." + (show)
@jgroudan

Hi Victoria,
Please contact me before (asap) before proceeding. There is a more "modern" much safer procedure performed by Dr Gillespie in Phoenix - Robotic Laparoscopically. Go home cured same day. No nerve blocking necessary. Goes in and severs nerves causing the ACNES. He severed my T8, T9 and T10 and had my life back immediately. I sent you a private message.

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I can't find your private message and am not allowed to post my email

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 20, 2023
In reply to @vlvhvlvh "I can't find your private message and am not allowed to post my email" + (show)
@vlvhvlvh

I can't find your private message and am not allowed to post my email

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@vlvhvlvh, You should be able to click on the small envelope icon at the top right of the page to view all of your private messages, including the one sent by @jgroudan

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jgroudan | @jgroudan | Feb 21, 2023
In reply to @vlvhvlvh "I can't find your private message and am not allowed to post my email" + (show)
@vlvhvlvh

I can't find your private message and am not allowed to post my email

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Then send me a private email with your personal email. Let's try that Jeff Groudan

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sassymama3 | @sassymama3 | Feb 21, 2023
In reply to @vlvhvlvh "Hi, I have also been dealing with Abdominal Wall Nerve Entrapment Syndrome for over 4 years..." + (show)
@vlvhvlvh

Hi, I have also been dealing with Abdominal Wall Nerve Entrapment Syndrome for over 4 years . And it's true when you say your pain level is a 10. I've also been to multiple doctors and had so tests, scans, mri's and hospital stays with all showing no abnormalities. A few doctors thought it was all in my head!
About 2 weeks ago I went up to USF pain management in Gainesville, Fl.. The pain management was an anetheseoligst. He diagnosed me immediately! It was music to my ears!
He looked at the area where I feel the most pain and traced a nerve around my ribcage to my back . Each spot he touch with pressure hurt.
Game plan is he's going to block all the nerves on right hand side around to back. He'll only do one side at a time in case he punctures a lung, altht

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I, too, have had horrible pain. I had back surgery April of 2021 in which the surgeon said he was rebuilding my back. Still had the lower back pain & was said to give it a year, which I did, pain was still there after a year. Then in June 2022, there was a 2nd pain, which was like an electrical charge in my back. The back surgeon had no answer for me and told me he has done all he can do for me. I don't know what to do. Your problem sounds a lot like mine, so I am interested if what the Gainesville Dr is doing will work for you. I am also in Florida. Please keep me informed, if you can.

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vlvhvlvh | @vlvhvlvh | Feb 21, 2023

I'll be posting my progress as I go.
So sorry that you're having this pain
Victoria

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ilean | @ilean | Feb 21, 2023

I am having the same issue. Upper abdominal pain right under sternum m, nauseau as well. Been in bed 13 months. More $ spent and 11 specialist, no one can figure it out.

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1 reply
jgroudan | @jgroudan | Feb 22, 2023
In reply to @ilean "I am having the same issue. Upper abdominal pain right under sternum m, nauseau as well...." + (show)
@ilean

I am having the same issue. Upper abdominal pain right under sternum m, nauseau as well. Been in bed 13 months. More $ spent and 11 specialist, no one can figure it out.

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Sounds very much like Abdominal Cutaneous Nerve Entrapment ACNES. Google that and the CARNETT test. My surgeon cured me with outpatient procedure. Jeff G

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2 replies
ilean | @ilean | Feb 22, 2023
In reply to @jgroudan "Sounds very much like Abdominal Cutaneous Nerve Entrapment ACNES. Google that and the CARNETT test. My..." + (show)
@jgroudan

Sounds very much like Abdominal Cutaneous Nerve Entrapment ACNES. Google that and the CARNETT test. My surgeon cured me with outpatient procedure. Jeff G

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Will do! Thank you for the information.

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