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?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Donald | @donfeld | Feb 26, 2020

In reply to @donfeld "Did you ever get treated for those cysts? I have this pain mostly in bed at..." + (show)

Mayo could not help me at all! They called it restless back syndrome!?

Justin McClanahan, Moderator | @JustinMcClanahan | Feb 28, 2020

In reply to @donfeld "Mayo could not help me at all! They called it restless back syndrome!?" + (show)

Hello @donfeld, It is so frustrating to suffer with constant pain, especially when no one, even the professionals, seems to be able to find the cause. It wears one down. I’d strongly encourage you to contact the Office of Patient Experience https://www.mayoclinic.org/about-mayo-clinic/patient-experience. On this webpage, you will find contact information for the individual campuses, and also a general email. Staff are available to discuss comments or concerns you may have regarding your medical care. Your experience certainly sounds like something Mayo Clinic would want to be aware of and work to help remedy.

Justin McClanahan, Moderator | @JustinMcClanahan | Feb 28, 2020

In reply to @rritam "Hi donfeld, try reading the Mayo Clinic proceedings at this link: https://www.mayoclinicproceedings.org/article/S0025-6196(18)30671-2/fulltext It appears that the..." + (show)

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.?

Lucie | @lucie2 | Feb 28, 2020

In reply to @rritam "Hi ken82, glad to hear that's your experience. I have dx of A.C.N.E.S. confirmed by Univ..." + (show)

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!

Donald | @donfeld | Feb 28, 2020

In reply to @JustinMcClanahan "Hello @donfeld, It is so frustrating to suffer with constant pain, especially when no one, even..." + (show)

I have already done that at least three times and found very little results. However, I just got a notified that one of the doctors is being retired who wouldn't give me the proper answers and gave me a real run around. After surgery I had for a herniated that went bad severe spinal leak that I couldn't get an answer from this doctor except through my portal. They gave me three choices and one was surgery which they didn't recommend again, PRC which I did already months before and to stay on opioids for the rest of my life. Not good!

rritam | @rritam | Feb 29, 2020

In reply to @JustinMcClanahan "Hello @rritam, as @ken82 points out, Mayo Clinic uses a collaborative approach where multiple specialists and..." + (show)

@ 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"?

rritam | @rritam | Feb 29, 2020

In reply to @lucie2 "Mayo gets a lot of requests, and it isn't that easy to have them accept you..." + (show)

@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.

Donald | @donfeld | Feb 29, 2020

In reply to @rritam "@ MODERATOR Justin McClanahan: Opioids.The last thing I want. Diagnostic trigger point injections & TAP block..." + (show)

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

Lucie | @lucie2 | Feb 29, 2020

In reply to @rritam "@Lucie2, I did NOT ask them to accept me for treatment. Can't afford. Based on Dr...." + (show)

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.

rritam | @rritam | Mar 1, 2020

In reply to @lucie2 "Rritam, You might be interested in this article on ACNES and neurotomy, the research though was..." + (show)

@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.