Has anyone been diagnosed with Abdominal Wall Pain

@colleenyoung After that letter, which I found appalling, I started posting to your sites under rritam.

@colleenyoung: I hope you happened to read Seth Sweetser in Mayo Clinic Proceedings, "Abdominal Wall Pain: A Common Clinical Problem." Why are patients ignored in your forums?

@rritam, I appreciate your sharing more of your situation. I think you are doing a lot to help raise awareness about ACNES. Did the resection surgery work for you?

I know your pain and the lack of confidence in some medical practioners. I have been a RN for 32 years, 21 of which was in a large metropolitan hospital. I am now at my pre high school weight. him to my medical record that if he had bothered to review he would have much earlier in this 9 months of pain, nausea and intolerance to food. He patted my on my little head and assured me that it would be negative, that all of my symptoms were due to depression , the "brain gut" connection. much to his suprise I had an impacted stone in the neck of my gallbladder and a gallblader full of stones. He did not have the ability to be humble and appologize for my months of misery. as I pointed out that he had unecessarily caused my inability to function and him being SO SURE he knew best.

@rritam and others, thought I posted a reply and dont see it. I did have last week my pain mgt in my market that I have used 6 times over the last 20 months finally get back to me on a desperate message to keep looking and talk to the pain doctor group/in their team meetings. This was suppose to be done a long while ago, I guess urgent message sent on MY Chart they took more seriously. The doctor I work with does give me the time but I know even though they are a large hospital chain in ST Louis and a teaching hospital with thousands of employees/medical professionals they arent up on abdominal wall pain. I might not fit the exact example of ACNEs but my problem is abdominal nerve pain. The most recent CT still showed my organs look OK and no hernias though not sure anyone knows if the one repaired 20 years ago has scar tissue issue. We did a Zoom call for 30 minutes and discussed radio frequency ablation. The only help that has worked was back in September during my second injections at this hospital pain clinic when they injected steroids' in each far side or eight inches away on each side of my navel/ right below my ribs. These injections were into my ilioinguinal and hypo gastric nerves. The doctor said we would first do a day of test injections to nail down the best sites, hoping we can find them. The ablation would be done on a different appt and would be done from my back side, grabbing more of the start of the nerves closer to my spinal cord. I know this is a careful and skilled hospital clinc but they do mostly all ablations on different nerves and parts of the body etc (for backs, shoulders, knees, cancer patients and others in more chronic pain). Not sure when this can happen as the St Louis market is maxing out hospitals with Covid. I do have the Mayo appt on 12/7, not sure how Mayo can give you the full medical resources you need to figure out complex problems while having over 800 employees out or quarantined with Covid. I see them pushing this appt out or I will have to as I don't want to go 400 miles for a half experience. My daily pain when not sleeping 6-6.5 hours per night is a 7.5-8.5-Terrible. Thoughts from all are appreciated!

@rritam You seem to have some knowledge of ACNES. My 10 year old daughter was recently given this diagnosis after ruling out appendicitis and any GI issues. However, the ultrasound-guided injection meant to block the nerve did nothing for her. Her pain is in the right lower quadrant of her belly and it's constant, but worse when she laughs, stands up from sitting, bends down or if we're driving over bumps. We've taken her to physical therapists and at least one of them is not convinced she has the correct diagnosis. I'm curious what your symptoms were and what your results were with the injections.

@sawah3 i wonder if she could have a psoas strain or tension or scarring. The spinal nerves go through the quadratus lumborum and the psoas as they travel on their paths including to below (some doctors implant stimulators in the psoas for intractable back pain). There are a series of psoas stretches and exercises. These could include things like pikes, “hip flexor stretches” and other “psoas exercises”, etc. There are tons of resources about those exercises online. It might be worth a try (within toleration). Incorporate deep breathing when possible. If you think that sounds silly google a condition called “quadratus lumborum syndrome”. Muscles clamping on nerves can cause pain (that’s just a known example). I had a lot of soft tissue pain and have had good luck with particular exercises and stretches and found various physical therapists helpful, most MD’s and their NSAIDs not too helpful. Good luck.

@sawah3 Welcome to Mayo Clinic Connect, a place to give and get support. Your 10-year-daughter was recently given the diagnosis of ACNES and you are looking to connect with members that have experienced ACNES.

Members like @leet3415 @woogie @rritam @fireball59 @jenniferhunter have experience discussing this topic and may be able to help answer your questions.

Below I have linked a previous discussion related to ACNES. You may want to scroll through and read previous posts and suggestions.

- ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome https://connect.mayoclinic.org/discussion/acnes-abdominal-cutaneous-nerve-entrapment-syndrome/

May I ask if you have considered getting a second opinion of a specialist since the physical therapist questioned the diagnosis?

@sawah3 I have chronic abdominal wall pain at a level 8 and 18 hrs per day. Have had the same pain over two years now and was avg level 7 last year. Like your daughter and more I have had the MRI, CT Scans, blood work, gall bladder tested, bladder checked and had many different injections. My pain is now pelvis to xiphoid. Hurts to walk, driver over bumps, do steps etc because of the ab wall moving. Mine is 8 inches wide or so down the middle. When I wake up early due to pain and urinate right after I am back to 8 to 8.5 even. Pain more above navel and hurts to bad to lay back down, cant fall back asleep. I dont throw up but some light headed and stomach nausea do I sit up in bed for hours. Pain meds and antidepressants dont work for my pain. I am trying to line up a celiac plexus block with a pain mgt doctor. My pain doctor from last year doesnt do those, the thoracic and intercostal didnt help. Trigger pt didnt help. The second block they tried over a year ago in the ilioinguinal and iliohypogastric with steroids helped after a few days and then last for a few days and quit. I think I need nerve ablation. I dont though have any previous injury or surgery to attribute to. Your daughter should look into those lower nerves being pinched, trapped or injured and maybe just needs released. I am at wits end on pain, just even getting a 25% reduction for 4 hours would per day would be OK until better arrived. Its very hard to find a doctor that is familiar with abdominal nerve pain and how to investigate and treat it. Not every pain is a gall bladder or appendix. I saw a plastic surgeon and he didnt think my diastasis from navel to xiphoid had anything to do with it. Scans are clear so you are left with the nerves that mess with the muscles. I can't get my nerves to shut off. What about Ketamine infusions or other IV infusions for pain, not one doctor of mine has brought this up. Oxy and Hydro did nothing for me at the 15-20mg level. I'm not sure nerve pain in the abdomen responds to pain killers or antidepressants. We both need a lot of help because your daughter will have or has depression as its so hard for kids to deal with this. I finally cracked some mentally as I dont want to talk on the phone with many or see many at all. My biggest issue besides pain is now for the last 3 months loss of appetite. I have lost 11% of my total from June. I am not under weight but having a hard time wanting to eat 1500 calories per day. Medical Cannabis so far wont cut it for me or doesnt help much anymore. Kids can't do cannabis or even certain adult drugs so keeping them going emotionally is key, hope you can find a good pain mgt doctor in your area. I have about exhausted my town of St Louis/2mm people. I have a Mayo appt 2nd week Feb in MN but will be hard to survive till then. Chronic pain needs hope or something else to try next to keep you going.

Hi, I have had two trigger point injections, with no success for what I call spasms. Mine is due to gastric lapband damage. I have been to so many doctors with no success. I finally went back to the bariatric doc, and he said it must be nerve damage. So I started researching abdominal pain, and nerve damage. I came upon ACNES, and it fit me to a T. I went to a neurologist thinking they would know about it. He was extremely rude, and treated me like I was crazy, said he never heard of ACNES, and doubted any other neuro knows what it is. So I left angry. I then started to look for a doc who works on pain. Finding a clinic who works with abdominal is hard. But I found Dr. Lynch here in AZ, and he had info on his page about researching ACNES. So I scheduled a appt. I got a trigger point injection... they were calling it myalgia. My second trigger point, was with Dr. Lynch, I brought up Acnes, and he looked at me, in wonder I guess you might say. I wanted to know if they actually diagnosed me with it. He stated that trigger point injections don't work well for that problem. And wanted me to schedule a in office visit with him to discuss it. In the mean time, I had a appt for med renewal, and I mentioned it. She said let me call the doc, Dr Lynch was not available, so she called Doc McJunkin. He said I needed a neuroma percutaneous nerve injection. I am scheduled to have that done tomorrow, and then hopefully a nerve ablation following if it is successful. I was previously told a ablation can not be done on the stomach. It actually is not the stomach per se, it is abdominal, up and to the left of my belly button, where the port for the lapband used to be. Dr. Lynch said it can be difficult, as there are so many nerves, it can be hard to identify which one is causing the pain. Let me tell you, I am very glad I brought it up to Dr. Lynch, because as I say, they were just treating me for myalgia, and no diagnosis for ACNES. Therefore receiving the wrong treatment, for what I think it really is. She asked me if I self diagnosed, and I said Yes , after doing much research, I am positive that this is, what it is. So my injection tomorrow is actually before my consult with Dr Lynch next Monday the 11th. Dr Lynch has done a incredible amount of research on ACNES, and he told me he has had one other patient with this. And there is a different procedure they can do, and that the other patient had great success. I am assuming that it is this other injection, followed by ablation, as Dr. McJunkin is familiar with ACNES as well. So we will see. I have suffered with this pain since 2007, and I am so tired of it. I pray I get some relief. I hope this is not too confusing. Pills have never worked for me. Medical Cannabis in different forms has helped very little. They prescribed me a pain cream, from the Potters House of Apothecary, I use this when I have a spasm, and it does seem to help a little. I hope this helps. Susie