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.

susanders | @susanders | Mar 21, 2023

In reply to @vlvhvlvh "Dr Amir Jafari works at the University of Florida Pain Management in Gainesville,.Florida" + (show)

Thank you, @vlvhvlvh. I will look him up.
Susan

susanders | @susanders | Mar 21, 2023

In reply to @benacnes "Hello Susan, I'm glad to be able to help! I guess the only thing I could..." + (show)

Hello Ben,
Thank you for your reply. It really helps to talk with people who've had the procedure. Another question is have you noticed any difference in your bowel or bladder functions?

I am relieved to hear your muscle function is normal. I have an imaginary vision that severing the nerves will leave me with no leg function, unable to walk again. I used to walk and hike for exercise, and haven't been able to in years. I have lost some of my identity from ACNES, and my hope is to be able to 1) sleep on my left side, 2) go for a mile hike without suffering every night for weeks from the unbearable pain.

Lastly, I got up the courage to call Dr. Gillespie's office yesterday. I got the instructions to gather all my records and send them to him. He will review my file and then we can set up an appointment. He understands that I am a long distance away (in Kansas) and he can give me an initial evaluation by long distance.

Gratefully,
Susan

kdpetti | @kdpetti | Mar 21, 2023

In reply to @susanders "Thank you, @kdpetti. I hope you get the relief you need from the Calmare Scrambler therapy...." + (show)

Hi Susan,

So you are still suffering? There is a group of Dr's that do a pudendal nerve decompresion surgery. I'd be happy to pass along their information.

Kenji

susanders | @susanders | Mar 21, 2023

In reply to @kdpetti "Hi Susan, So you are still suffering? There is a group of Dr's that do a..." + (show)

Hi Kenji,

Thank you for offering the information. In my case, it's not the pudendal nerve.

Wishing you all the best of good health.

Susan

kdpetti | @kdpetti | Mar 21, 2023

welp, there's the iliohypogastric, ilioinguinal and the pudendal nerves. Which are you suffering from? I'm unable to sit or bend over whatsoever!

God bless you!

benacnes | @benacnes | Mar 22, 2023

In reply to @susanders "Hello Ben, Thank you for your reply. It really helps to talk with people who've had..." + (show)

I understand exactly what you're saying. I did not have a life for 3 years. I could not sleep on my side and sometimes the weight of the covers on my stomach would cause such excruciating pain. Was common to cry getting dressed the pain was so intense. I feel for you.

I had no issues whatsoever with bowel or bladder control or sensation. There was a small concern that a part of my abdominal muscle might not work but that wasn't the case. It will not effect the use of your leg.

I'm glad you got in touch with them. I flew down from Alberta, Canada and stayed at a hotel in Phoenex. There's one right by the hospital. They have a discount for patients of St. Joseph's. Totally worth the effort!

Ben