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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 | Mar 13, 2023
In reply to @susanders "Thank you. I've had so many treatments that were unsuccessful. It's scary to think that severing..." + (show)
Profile picture for susanders @susanders

Thank you. I've had so many treatments that were unsuccessful. It's scary to think that severing the nerves will work, but I just can't go on like this. I will work up the nerve to contact Dr. Gillespie. I live in the midwest, so would have to work out going to Phoenix to see him.

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It would be a worthwhile life changing trip.

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losinghope27 | @losinghope27 | Mar 13, 2023
In reply to @susanders "@losinghope27 Did you have Radio Frequency Ablation, and if so did it help? Thank you." + (show)
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@losinghope27 Did you have Radio Frequency Ablation, and if so did it help? Thank you.

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No, I did not. I am just starting to look into it, and was wondering how Victoria’s treatment went

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susanders | @susanders | Mar 13, 2023
In reply to @jgroudan "It would be a worthwhile life changing trip." + (show)
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It would be a worthwhile life changing trip.

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@jgroudan
I would like to send you a PM and hear your comments on the surgery and the doctor's protocol to proceed to surgery, if you know. I can't figure out the way to send you a PM from your homepage as is described in the Help section. Do you know how? You could send me a PM and I could reply? Thank youjgroudan I would like to send you a PM and hear your comments on the surgery and the doctor's protocol to proceed to surgery, if you know. I can't figure out the way to send you a PM from your homepage as is described in the Help section. Do you know how? You could send me a PM and I could reply? Thank you.

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jgroudan | @jgroudan | Mar 13, 2023
In reply to @susanders "@jgroudan I don't see on your homepage a link to send you a private message. I..." + (show)
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@jgroudan I don't see on your homepage a link to send you a private message. I would like to know more about your surgery. Do you know how to send PM through this group? Thank you.

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Ask the Mayo Mentor. He/She should be able to help.

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Colleen Young, Connect Director | @colleenyoung | Mar 13, 2023
In reply to @susanders "@jgroudan I would like to send you a PM and hear your comments on the surgery..." + (show)
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@jgroudan
I would like to send you a PM and hear your comments on the surgery and the doctor's protocol to proceed to surgery, if you know. I can't figure out the way to send you a PM from your homepage as is described in the Help section. Do you know how? You could send me a PM and I could reply? Thank youjgroudan I would like to send you a PM and hear your comments on the surgery and the doctor's protocol to proceed to surgery, if you know. I can't figure out the way to send you a PM from your homepage as is described in the Help section. Do you know how? You could send me a PM and I could reply? Thank you.

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I noticed that you wished to send a private message to @jgroudan. As a new member, you will be able to send private messages in a few days. There is a brief period where new members do not have the ability to send a PM. We do this to deter spammers and keep the community safe. You can, however, receive private messages from established members like @jgroudan should they choose to PM you.

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susanders | @susanders | Mar 18, 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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@vlvhvlvh I hope you are feeling better. I am an ACNES sufferer. Did you have the radio frequency severing of the nerves in Gainsville, FL? If so, would you please tell me how you're doing? I see my pain management physician on Monday 3/20, and I think that he is going to discuss doing this for me. I'd appreciate any input. Thank you.

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susanders | @susanders | Mar 18, 2023
In reply to @benacnes "Yes, under your recommendation I flew down to see him in March. After my visit we..." + (show)
Profile picture for benacnes @benacnes

Yes, under your recommendation I flew down to see him in March. After my visit we scheduled the surgery for April 28th. Notbsure if I thanked you for pointing me in the right direction but I am grateful!

How long before the pain from the surgery was better? I feel different every day. Of course, the nerve pain is completely gone.

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Hello @benacnes... I hope you are feeling better! Did you see Dr. Gillespie, and how are is your ACNES pain now? I am considering going to him. Four years with ACNES...tests, shots, trial of implantable stimulator... still in chronic pain. I welcome your input.

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susanders | @susanders | Mar 18, 2023
In reply to @kdpetti "Three + years of not being able to sit or bend over. Three unnecessary surgeries and..." + (show)
Profile picture for kdpetti @kdpetti

Three + years of not being able to sit or bend over. Three unnecessary surgeries and one nerve block targeting the ilioinguinal nerve not the nerves of the abdomen. Diagnosed with CRPS in August of 2021 but firmly believe if I find the right Dr that understands anatomy and this condition I can once again have my life back. 18+ hours a day on my back. This is no way to live. The Mayo won't take Medicare patients and they won't let you pay out of pocket, very disturbing but what can I do?

I contacted Dr Thomas Guillispe of Saint Joseph's of Phoenix as he's with Dignity Health the folks that misdiagnosed my condition. I'll do anything. This is no way to live.

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Hello, @kdpetti ... I hope you are much better! I am an ACNES sufferer - 4 years left sided pain. Tests, shots, trial of implantable nerve stimulator, nothing helped. Did you get to see Dr. Gillespie? I am considering going to him. Thank you.

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benacnes | @benacnes | Mar 18, 2023

Hello @susanders
I had my surgery April 28th of 2022. Best day of my life so far. I had spent 3 years with ACNES. Like you, injections, tests and so on. I was told many times that this was a psychological issue as well. From the moment I woke up from my surgery I have not had any nerve pain what so ever. Dr. Gillespie and the team at St. Joseph's do exceptional work. I highly recommend you follow this route. It cost me $26,000 CAD as I had no insurance and I would do it all over again. I also would suggest physiotherapy as having ACNES that long, your body will need to recover. That will take a little longer, of course.

Best wishes for a speedy recovery,
Ben

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susanders | @susanders | Mar 19, 2023
In reply to @benacnes "Hello @susanders I had my surgery April 28th of 2022. Best day of my life so..." + (show)
Profile picture for benacnes @benacnes

Hello @susanders
I had my surgery April 28th of 2022. Best day of my life so far. I had spent 3 years with ACNES. Like you, injections, tests and so on. I was told many times that this was a psychological issue as well. From the moment I woke up from my surgery I have not had any nerve pain what so ever. Dr. Gillespie and the team at St. Joseph's do exceptional work. I highly recommend you follow this route. It cost me $26,000 CAD as I had no insurance and I would do it all over again. I also would suggest physiotherapy as having ACNES that long, your body will need to recover. That will take a little longer, of course.

Best wishes for a speedy recovery,
Ben

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Hello @benacnes
That is great news! I am thrilled for your successful surgery.

Can you please clarify what you mean by a body needing to recover and needing physiotherapy? What is your experience with this post-op?

Thank you,
Susan

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