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ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome
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?**
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Hi Jeff,
I’d like to private message you but I don’t think I have that ability yet, since I just joined the Mayo Clinic Connect today and they said this was for anti spam reasons. Do you have any idea when I’ll be able to post private messages?
From what I can gather on the Web, Dr Gillespie has performed many hernia surgeries and has a very long experience with robotic laparoscopic surgeries, of which some were for ACNES.
I believe that in my case, regardless of how the nerve pain has come about, the solution in targeting one or more of the T nerves for a neurectomy is the same. In my case, it’s looking more like a T6 or maybe T7 than lower down.
With all of his varied experience, I would hope that he could help me, couldn’t he?
What’s the best way to try to get the conversation started with him?
Hi Jeff in AZ (@jgroudan)
When Dr Gillespie did your surgery to cut your 3 T nerves, exactly where did he perform the cut?
Did he do it in front, near the painful area?
Or did he do it towards the side of your body?
I guess he could do it anywhere right up to your spine, but then you would probably lose more feeling in your body than you would need to.
It was done robotically laparoscopically through 4 portals in the front stomach. From there he directed the instruments to severe the 3 nerves. Outpatient went home in the afternoon cured.
Jeff
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1 ReactionOn paper you sound like a good candidate for Dr Gillespie. The YouTube on robotic laparoscopic surgery for hernia show “exactly “ what the surgery entails. Jeff
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1 ReactionHi Jeff
Can you please do me the favor of sending me a test private message?
I don't think private messaging is enabled for me yet and maybe that will do the trick?
Thanks.
I forgot how to private message. Hopefully the Mayo monitor can tell us.
The instructions are listed in the Help Center at the top right hand corner of this page.
Basically, you just click on my username @jeracnes and it should take you to my profile where you can send a message.
Here they are:
Click the member's username. This will bring you to the member’s profile page.
Click Send Private Message.
Send PM
Write a subject and your message.
You can add other members to the private message by typing their usernames in Add Recipients.
Click Send Message.
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6 ReactionsWhat kind of diagnostic nerve block did he do? In what location, what drug? Knowing that would be helpful to me as I seek a solution to this unbearable pain. Thank you.
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1 ReactionMy husband has been struggling with lower abdominal pain for 20 years. Every gastro doctor says they cannot help him. All his major test come back normal yet he suffers every single day. He is 60 years ol d, very active, but every day he wakes up with pain and it could hit him whenver. I KNOW this A.C.N.E.S is what he is suffering with. How do you tell a dr that this is what you think when they all give up. I have even tried to get him to Mayo, we are in south florida, but they say he has to be 6 months free of pain pills. Thats very hard. He only takes one kind, but its at least something. I just know this is the right diagnosis...how can he be helped? Where do I go to from here?
Thank you
Diane Anderson