Has anyone been diagnosed with Abdominal Wall Pain

Posted by rufus444 @smiles444, Dec 15, 2017

Starting on May 1, 2017, I began having abdominal pain that wraps around to my left back. The first time it happened, I went to the emergency room because I thought I might have an apendicitis. The hospital did a CT scan of my abdomen, everything looked okay. I went to the emergency room several times over the summer with excruciating abdominal and back pain. I had a hida scan done, a colonoscopy and an endoscopy and CT and ultrasound scans of my abdomen. Everything looked normal. In September of this year, a doctor at Mayo felt the area on my abdomen and did a Carnett’s test. He suggested it could be abdominal wall pain. I have had two steroid injections and I am still having pain in the same area. Has anyone out there had this type of diagnosis and still having pain?

Liked by graceandpeace

@JustinMcClanahan

Hello @rritam, as @ken82 points out, Mayo Clinic uses a collaborative approach where multiple specialists and others are routinely pulled in to review possible approaches to patient care and to include the patient as a valued member of the team. Mayo Clinic Proceedings leverages the expertise of its authors (Mayo and non-Mayo experts) to help physicians understand best practices in diagnosis and management of conditions encountered in the clinical setting. You can read more about the journal's purpose here https://www.mayoclinicproceedings.org/content/aims.

@rritam, what treatments have helped alleviate your pain associated with your diagnosis of A.C.N.E.S.?

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@ MODERATOR Justin McClanahan: Opioids.The last thing I want. Diagnostic trigger point injections & TAP block worked only a short time. Neurosurgery is appropriate for recalcitrant A.C.N.E.S., as Dr. Sweetser's article also recommended. I did not ask for an appt. at Mayo gastroenterology. My request: "if one of your assistants can please tell me where to find help for neurotomy…Your CME information is what I hope for…please help me find relief." Mayo's form letter was truly an insult, ignoring my request, and stating that the care I was receiving locally was adequate. Really? How many more years of opioids would Mayo say is "adequate"?

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@lucie2

Mayo gets a lot of requests, and it isn't that easy to have them accept you for treatment. If I were in your shoes, I would try again and at the same time have a referral letter maybe by someone that treated you with that diagnosis, and request a second opinion about the diagnosis and treatment options. Best wishes!

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@lucie2, I did NOT ask them to accept me for treatment. Can't afford. Based on Dr. Sweetser's CME, I asked for information. Gastroenterology isn't even the right specialty unless you tell me they do neurotomy or neurectomy. Since Sweetser's article mentioned neurotomy as a treatment, I made the wild guess that he would be able to tell me where to find it. Ha ha.

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@rritam

@ MODERATOR Justin McClanahan: Opioids.The last thing I want. Diagnostic trigger point injections & TAP block worked only a short time. Neurosurgery is appropriate for recalcitrant A.C.N.E.S., as Dr. Sweetser's article also recommended. I did not ask for an appt. at Mayo gastroenterology. My request: "if one of your assistants can please tell me where to find help for neurotomy…Your CME information is what I hope for…please help me find relief." Mayo's form letter was truly an insult, ignoring my request, and stating that the care I was receiving locally was adequate. Really? How many more years of opioids would Mayo say is "adequate"?

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The problem I see at the Mayo is that you need a primary care doctor coordinate your care. That doctor has to know everything about you and your complaint so the doctors will believe you knowing that this doctor as examine you I knows what's best for your care at the Mayo Clinic. There is no primary care doctor unless I found out you pay $6,000 a year and they will sign you to a special care team. This is not covered by insurance as for people who come to the Mayo Clinic without a primary care doctor recommendation. That is a major problem for people like us we're trying to find out what's wrong with you and as you know we come there with pain trying to find out the cause. Big problem. I am now at Tampa General and what a difference as this is a great Hospital that really cares. And then you got USF right next door which is another big ass sex and they can't help you enough. They have a special Wing or building 4 stories high just for pain Rehabilitation. They know what they're doing when it comes to pain and Rehabilitation

Liked by rritam

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@rritam

@lucie2, I did NOT ask them to accept me for treatment. Can't afford. Based on Dr. Sweetser's CME, I asked for information. Gastroenterology isn't even the right specialty unless you tell me they do neurotomy or neurectomy. Since Sweetser's article mentioned neurotomy as a treatment, I made the wild guess that he would be able to tell me where to find it. Ha ha.

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Rritam, You might be interested in this article on ACNES and neurotomy, the research though was done in the Netherlands: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5916540/ . Maybe the main researcher does have connections with people in the US in that field.

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@lucie2

Rritam, You might be interested in this article on ACNES and neurotomy, the research though was done in the Netherlands: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5916540/ . Maybe the main researcher does have connections with people in the US in that field.

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@lucie2, I appreciate your msg, but I have had access to Dr. Boelens' research (among others') for a long time. I have a stack of case histories and research for over 2 years because that's how long 20+ physicians have brushed me off. I had to finally make my own diagnosis confirmed by the head of the Univ. Wash. Medical Center Pain Division in Seattle, but they "don't do" neurotomy/neurectomy. Dr. Boelens' group never responded. My pain is severe and prevents me from traveling very far, even if I could afford to go to the Netherlands for care. As @donfeld has pointed out, patients need a PCP to coordinate their care. This site is not a substitute for care or help, and I'm sorry I wasted your time and mine.

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@JustinMcClanahan

Hello @rritam, as @ken82 points out, Mayo Clinic uses a collaborative approach where multiple specialists and others are routinely pulled in to review possible approaches to patient care and to include the patient as a valued member of the team. Mayo Clinic Proceedings leverages the expertise of its authors (Mayo and non-Mayo experts) to help physicians understand best practices in diagnosis and management of conditions encountered in the clinical setting. You can read more about the journal's purpose here https://www.mayoclinicproceedings.org/content/aims.

@rritam, what treatments have helped alleviate your pain associated with your diagnosis of A.C.N.E.S.?

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All conservative treatments have failed. Mayo clearly describes the diagnosis and the treatment for A.C.N.E.S. but has repeatedly refused to identify where to obtain treatment for patients like me in severe pain. I quote Dr. Sweetser: "If patients desire treatment, multiple options exist including lidocaine patch application, local injection with local anesthetic with or without corticosteroids, chemical neurolysis, and surgical neurectomy. … Surgical treatment with neurectomy is available for medically intractable AWF [abdominal wall pain]. ….Surgical neurectomy is an option for medically intractable, severe AWP." The Mayo gastroenterology department has repeatedly denied me information on where to obtain surgical neurectomy EVEN WHILE STATING THAT IT IS AVAILABLE. What is the point of you moderators? I have clearly asked for information on neurectomy ever since I started posting on this site. My severe pain has been ignored, and you keep responding to me with pointless messages in which you keep ignoring my request for information. NEURECTOMY IS PROVEN EFFECTIVE FOR MY (now-chronic) PAIN SYNDROME. WHERE CAN I FIND SOMEONE WHO WILL TREAT MYREFRACTORY A.C.N.E.S. WITH NEURECTOMY?

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I have had chronic abdominal wall pain since 2018. It came on after a period of using a waist trainer, but I think it was really triggered by taking a big dose of ibuprofen on an empty stomach (god knows why, I read somewhere nerve damage is a rare side effect of ibuprofen.) For me it is accompanied by a strangling globus sensation in my throat and complete loss of appetite. Pain does not change in relation to meals and none of my symptoms match MALS.

After complete work up I self diagnosed with Carnett’s sign, went to a pain management doctor, had a set of nerve block injections. Pain went away for one afternoon so I knew it was that. I found the one surgeon in the UK who does the neurectomy surgery for ACNES cases and had the operation on the 18th of December 2019. It has made the pain much worse.

Nobody could understand the link between the ACNES pain and the throat/appetite symptoms so I went down the road of thinking that part of it was acid reflux. I ended up having anti reflux surgery, which has made no difference whatsoever (now I have side effects of that surgery to contend with too.)

I don’t know what else to do. I’ve tried a myriad of alternative therapies. I feel like after the neurectomy there’s nowhere else to go. I wish I’d never had the surgery, all the studies I read indicated that it helps in most cases. I’m so tired of being in pain, having no appetite and feeling like I’m being constantly strangled. This started when I was 26. I’m now 28 and I feel like my life is over. I don’t want to spend the rest of my life with this pain. It really, really sucks.

Liked by rt061069, rritam

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Hi @luigibracciaforte, I wish you luck. This site is useless. You're maybe better off trying Dr. Oliver Boelens in the Netherlands, whose clinic specializes in A.C.N.E.S.

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Could be Mast Cell Activation Syndrome. The only way to find out, however, is a blood test called MRT (mediator release test), which is a food sensitivity test…not a food allergy test. Everyone has hundreds of mast cells which are the good guys, but sometimes they are not. Food sensitivities can trigger all kinds of pain, nausea, etc. I watched a video presented by Ilana Jacqueline. It was amazing. My grandson had been undiagnosed for 2+ years and had every possible test, including colonoscopy, ultrasounds, brain & abdominal MRI's, etc. Nausea, vomiting and severe abdominal pain for the last two years of high school. It was a nightmare. He also has type 1 diabetes since he was 10 months old. He is now 20. His MRT test showed many food & chemical issues, including turkey, corn, peppers, tyramine, capsaicin, polysorb 80, and aspartame. Growing up with diabetes, his parents gave him many artificially sweetened foods and beverages to eliminate high blood sugar levels, which contained aspartame! This product turns into formaldehyde when it warms up in your body! Anyway, as a result of this MRT test, he has discontinued drinking diet sodas and is watching consumption of any of his triggers. After only 2 days being off the diet sodas, his morning nausea, vomiting and abdominal pain ceased to exist! I know this sounds unbelievable, but after watching him suffer every day for over two years, I am a believer. Just hope this helps you. It may not be aspartame sensitivity for you, but this test may provide you with information that will help. It is an expensive test done by a company in Florida, but to us, it was worth it. Corn is in almost everything, so this one is hard to eliminate, but we do the best we can. Good luck. Doctors seem not to know about this test. We had to find it on our own research.

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I have post inguinal hernia pain that is caused by the mesh encasing nerves causing all kinds of pain on one side, but to have true abdominal wall pain is usually an indicator or some systemic problem yet to be found. I can't imagine that with ultrasound and x-ray that anything serious would be missed in the abdomen by the doctors. There are books on chronic pain in the abdomen that you can get, so it is definitely a topic that has been studied. However, it is not a common practice for doctors to treat abdominal wall pain as much as say a chronic joint pain or back pain so you probably really need to push doctors to investigate as much as possible with imaging and definitely try physical therapy to strengthen core if you can. Many chronic pain problems involve small peripheral nerves that are rarely studied as pain generators yet they are exactly that. With experts like Dellon Institute trained physicians, you have better shot at a definitive diagnosis.

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@rritam

All conservative treatments have failed. Mayo clearly describes the diagnosis and the treatment for A.C.N.E.S. but has repeatedly refused to identify where to obtain treatment for patients like me in severe pain. I quote Dr. Sweetser: "If patients desire treatment, multiple options exist including lidocaine patch application, local injection with local anesthetic with or without corticosteroids, chemical neurolysis, and surgical neurectomy. … Surgical treatment with neurectomy is available for medically intractable AWF [abdominal wall pain]. ….Surgical neurectomy is an option for medically intractable, severe AWP." The Mayo gastroenterology department has repeatedly denied me information on where to obtain surgical neurectomy EVEN WHILE STATING THAT IT IS AVAILABLE. What is the point of you moderators? I have clearly asked for information on neurectomy ever since I started posting on this site. My severe pain has been ignored, and you keep responding to me with pointless messages in which you keep ignoring my request for information. NEURECTOMY IS PROVEN EFFECTIVE FOR MY (now-chronic) PAIN SYNDROME. WHERE CAN I FIND SOMEONE WHO WILL TREAT MYREFRACTORY A.C.N.E.S. WITH NEURECTOMY?

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Clearly, it is not something that the neurosurgeon wants to do if they won't even take appointments. Or, if they are overcome with people that aren't true surgical candidates, they usually pawn you off on some other physician who isn't an actual surgeon but is trained to figure out which patients actually could benefit from surgery. You really need to go elsewhere if you repeated hit dead ends. I find that it is sometimes more helpful to start out with some different problem and work your way up the chain before stating that you have some rare disorder as physicians will think that you are full of it.

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@jobby99

Clearly, it is not something that the neurosurgeon wants to do if they won't even take appointments. Or, if they are overcome with people that aren't true surgical candidates, they usually pawn you off on some other physician who isn't an actual surgeon but is trained to figure out which patients actually could benefit from surgery. You really need to go elsewhere if you repeated hit dead ends. I find that it is sometimes more helpful to start out with some different problem and work your way up the chain before stating that you have some rare disorder as physicians will think that you are full of it.

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Hi jobby99, my surgery was delayed because doctors were completely ignorant of A.C.N.E.S. My surgeon recently removed THREE TRAUMATIC NEUROMAS from my abdominal wall MISSED BY 23 PHYSICIANS FOR THREE YEARS.. I post here only to share with people in pain who have been dismissed as drug-seeking, psychosomatic complainers by the piss-poor American medical system. Your well-meaning advice does not apply to people with confirmed A.C.N.E.S. whose doctors ignore them because they've never heard of the condition. You're telling me and others that we "really need to go elsewhere" after 23 physicians failed us? Really?

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All, i’ve been dealing with severe chronic abdominal wall pain for 4 1/2 years, I am at a dead end and extremely depressed and frustrated that I can’t find a cure for this. They’ve done over 100 test and 15 different doctors and still nothing. Can anybody give me some type of a recommendation on what I can do?🙏🏽

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@ozzy72

All, i’ve been dealing with severe chronic abdominal wall pain for 4 1/2 years, I am at a dead end and extremely depressed and frustrated that I can’t find a cure for this. They’ve done over 100 test and 15 different doctors and still nothing. Can anybody give me some type of a recommendation on what I can do?🙏🏽

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Look into Mast Cell Activation Syndrome. My grandson went 2+ years with nausea, vomiting, and severe abdominal pain..every day. Last 2 years of high school were a nightmare. He had every test and procedure in the book with no positive results. Doctors pretty much didn't believe him. Through our own research, we found Mast Cell Activation Syndrome, and there is a food sensitivity test called MRT, Mediator Release Test. It is a blood test done by a company in Florida, Oxford Biomedical Technologies. It is expensive, but the results were amazing for my grandson. There were many foods & chemicals to which he is sensitive. One of the main ones was aspartame, the artificial sweetener, which turns into formaldehyde when it warms up inside the body! My grandson, now 20, has been a type I diabetic since he was 10 months old, so in order to limit carbs that raise blood sugar levels, his parents provided him with artificially sweetened, diet food and beverages. There were a few other triggers, like corn, capsaicin, tyramine, MSG, polysorb80, so we are carefully checking ingredients. The amazing turn for his fight against his daily illness routine, was when he stopped drinking diet sodas. Within 2 days, his morning nausea disappeared and the abdominal pain has gone as well. He is a totally different human being now because he is free of pain. You can also check out online a video by Ilana Jacqueline, who addresses this subject. She was very thorough and had many suggestions, one of which was the MRT blood test. Good luck. I hope this will help. We researched over 2 years trying to find something that would provide an answer, asking the doctors for different blood tests and procedures that they had not thought of, but this last one brought my grandson relief.

Liked by rwinney

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Also check MALS-Mesenteric artery ligament syndrome. It has all those symptoms. There’s a Facebook page MALS Awareness

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