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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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I sure will. Whenever Dr. Gillespie can do the surgery I will let you know. If I feel as good as you I will be very pleased to let the 30-or so Dr's. that I have seen over the last 7-years know, especially those that have said I need to, "manage" the pain with "counseling". To each of those Dr's. I told them, "I do not need counseling. I need a medical procedure". Stupid advice!
I just got off the phone with one of Dr. Gillespie's nurses, Jackie. She said she isn't sure if Dr. Gillespie will do injections on Friday to identify the problem nerves or if he will only do a physical examination. She said that if he decides to do the surgery next week there is a facility close by that does COVID testing. It was another tough night last night. Thanks, Stuart Olson
You can get my personal info on Google, phone number then you can text me to get off this site.
Jeff, Aren't we already communicating on a "private" message board? Either way I will try to find your number via Google.
@jgroudan and @saolson if you wish to, you may also consider the private message option within this forum to protect your privacy if you don't feel comfortable sharing personal information.
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1 ReactionHowdy. I have a similar story. February of 2019 I had a sudden and intense onset of abdominal pain. Sharp stabbing pain through my back and around my right side. Difficult to describe the pain. Sharp stabbing, electrical shock, burning. 2 trips to the ER in a 24 hour period followed by many more trips a few times a week. First year of imaging and cameras up there and down here and everything looked normal. CT's, MRI's, bone scan, ultrasound, x rays and so on showed normal. Then I received the, "It's all in your head", diagnosis. Eventually, after a great deal of persistence, I was positively diagnosed with ACNES. Trigger point injections and cortisol steroids provided Short term relief of between 1 to 4 hours if it worked. Meds taken include hydro morphone, Cymbalta, pregabalin and codine to name a few. More side effects than relief. Fast forward 18 months to pulsed radio frequency ablation. When just the right spot is done I receive substantial relief. The meds are effective and I am able to function. Current medications are pregabalin, Cymbalta, codine(T4's) and THC/CBD. In Canada THC/CBD is legal. I use it in the form of a balanced blend oil. This combo has a significant impact on my mental abilities but helps enough with the pain that I can function enough to get cows fed. I am a 45 year old man and this pain brings me to my knees in tears. I have been trying to find a doctor in Canada to perform a neurectomy with zero success. I would like to hear from people that have had this procedure.
Wow!! Similar story hear. Have yet to have the surgery. All other treatments have provided short term, partial relief
Hello Ben, I suffered from the horrible pain of ACNES for 9 months before I was fortunate enough to find a great hernia surgeon at St Joseph's Medical Center in Phoenix. Dr Gillespie performed Robotic Laparoscopic surgery (29 minutes of surgery) cutting my T8, T9 and T10 abdominal nerves. I left the hospital at 4pm same day totally pain free - cured. After the surgery I came in contact with another sufferer on Mayo Connect and he is have the identical surgery next week by Dr Gillespie.
That sounds incredible to me!! I cannot seem to find anyone in Canada that can perform this procedure. Do you know the approximate cost?
Dr Thomas Gillespie practices at St Joseph's Med Ctr in Phoenix. His number is 602.406.3874. His team specializes in Robotic Laparoscopic Surgery. One of top surgeons in Phoenix. No idea what cost would be since I was 100% covered by Medicare.
Where did he sever the nerve? At the spine? Do you have numbness now or any other effects?