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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.

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

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

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

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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)
Profile picture for vlvhvlvh @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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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)
Profile picture for ilean @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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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)
Profile picture for jgroudan @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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ilean | @ilean | Feb 23, 2023
In reply to @jgroudan "Sounds very much like Abdominal Cutaneous Nerve Entrapment ACNES. Google that and the CARNETT test. My..." + (show)
Profile picture for jgroudan @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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I will bring this up to my GI!!

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losinghope27 | @losinghope27 | Feb 24, 2023
In reply to @fireball59 "I have been to so many doctors its ridiculous, and have had every test done possible......" + (show)
Profile picture for fireball59 @fireball59

I have been to so many doctors its ridiculous, and have had every test done possible... they all look at me like I am nuts ... finally found a pain clinic that Knows about ACNES ... I pray they can help me.

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Can you please provide the name and location of the pain clinic you found the knows about ACNES?

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jgroudan | @jgroudan | Feb 25, 2023

The surgeon at St Joseph’s Medical Center in Phoenix is Dr Thomas Gillespie. He performed Robotic Laparoscopic Surgery cutting my T8, T9 & T10 abdominal nerves. Went home same day cured. Call his office, They will guide you. Jeff

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