ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

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

On 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

Hi 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.

My son is 13 and was just diagnosed with ACNES my Dr. Tollestrup in Nevada. My sons symptoms are a constant burning pain in his upper abdomen. It hurts even more if he is active or eats. It’s painful for him to walk and makes him very nauseous to ride in a car. He has had this constant burning pain for 6 months. He does better if he is sitting down or lays on his right side. He has been seen my countless Doctors and had every test and lab in the book done on him. None of the pain medicines help. I read about ACNES syndrome and contacted Dr. Tollestrup. After reading my sons medical story, he believed he had ACNES and wanted to evaluate him and try a diagnostic nerve block. The nerve block immediately took away his pain. Now we are waiting to have surgery. We are ready for my son to get back to being normal. Hope this helps.

What 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.

My 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

Most diagnostic nerve blocks are the same, in my experience.
The anaesthesiologist injects a numbing agent, like lidocaine or something similar into the painful area that you pointed at.
If they hit the right spot and your pain is nerve related, then you should have partial or complete relief from your pain for a short period of time, up to two hours or sometimes more, but rarely more than a day or two.

If the diagnostic injection worked, then they can try another injection using a steroid added to it.
For some incredibly lucky people, one or two steroid injections can sometimes permanently reduce their pain. But that is not the normal outcome for most ACNES sufferers. However, it is definitely worth a try for you.