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Median Arcuate Ligament Syndrome (MALS)
I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?
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HugInterested in more discussions like this? Go to the Digestive Health Support Group.
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I don't think it attached properly, let me try again 🙂
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1 ReactionYour welcome!! We have to help each other out!!
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1 ReactionKari, what is FMD? Do you happen to know any CFS support groups? I don't know which to focus on. It is all overwhelming. I hope I get some answers or direction of what to do next!! Hope you had a nice day and didn't eat to much and get sick. I am so sore from just cooking and standing. I get such pain from movement. I have the eating pain and the movement pain. Do you find that as well?
@kariulrich i would love some recommended reading. Thanks. My history is very complicated...even without something like MALS. I already have a rare disorder called VHL. So i have had a half dozen surgeries, including three major abdominal surgeries. I've had a whipple which removed a good chunk of my digestive tract and head of my pancreas, a bilateral adrenalectomy, and a couple of other bits and bobs removed. I have a lot going on in the abdominal region. Over the last four years i have had an ongoing agonizing epigastric pain that is not related to eating, and got a whole bunch of shrugs from doctors, including one comment of "I'm not going to say it's all in your head..." And has been pretty much brushed off as "scar tissue". Luckily, i figured out that a course of 3 advil per day keeps that pain managed pretty well. This new stomach pain came on in the last year, and i had been seeing a local gastro doctor, but i got the brush off from him, so i emailed my endocrinologist at UW and asked him to add a gastro to my team there. I already have a neurosurgeon, pancreatic surgeon, retina specialist, and endocrinologist...gastro should complete the set LOL. Some of the things that go with MALs sounds very familiar, but some not familiar. So hopefully i can finally get this sorted. I am managing my symptoms well enough that the worst episodes come like attacks now instead of all the time. So that is good. One the weird things, and the thing that causes me the most problems is liquids. Have you ever heard of liquids being a problem for anyone else? For example a few nights ago i had one bowl of split pea soup for dinner. Liquids are a known risk food for me, but i waited a few minutes after eating the soup and didn't feel any warning signs. So i decided i could have a cup of apple juice. About an hour later i was in so much agony. The easiest way to describe it is feeling like i just won a hotdog eating contest and now my stomach is about to explode. I was belching. Uncomfortable. Gripping my stomach. Pretty much debilitated. And looking at the floor like it would be a good place to writhe in agony. I was like that for about 2 hours with no end in sight. Since it has helped me avoid puking in this situation before i worked up the courage to slowly walk up and down the stairs a few times, popped a couple advil for good measure. After a total of 2hr 45 minutes it finally stated to ease off and then was gone pretty quickly. All this from maybe 2 cups of liquid. Have you heard of that happening to anyone else?
Has anyone had a Dr explain why patients were fine no symptoms for many years and then all of sudden have MALS symptoms?
Gosh, I would love to know this as well!
@jjren i read somewhere that MALS can sometimes come after weight loss or severe illness or surgery.
Special Announcement
Mayo Clinic recently started a blog series called Experts by Experience. It is published bi-weekly on Mayo Clinic's Social Media Network here: https://socialmedia.mayoclinic.org/tag/experts-by-experience/
Today we published an article written by your fellow MALS member and Connect friend @kariulrich
- Grieving the Loss of Your Physician – Experts by Experience by our very own https://socialmedia.mayoclinic.org/2018/04/06/grieving-the-loss-of-your-physician-experts-by-experience/
Thank you Kari for sharing your insights here and for Mayo Clinic professionals!
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2 ReactionsThought you all would like to see this, we have had discussions before about pharmacogenomics testing, there is a program coming up on this topic! https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-radio-pharmacogenomics-testing/
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2 ReactionsHi I do not know who to address this to so I'll guess I just state my case. I live in New England Massachusetts to be exact. not the city but the arm of cape cod I went to the emergency room complained about a migraine doctor ask some questions that led to two cat scans one of the head and one of my mid torso (Woke up one evening on my stomach gasping for air) and this is when I learned about a celiac aneurysm I happen to have 2.3 in size I later learned I have this compression syndrome. So I began to research on the internet and learned a lot about it. My main concern is that I have been bounced back and forth between the same group of doctors and ended up being referred back to the very first doctor who happens to claim he has done hundreds of celiac artery procedures. I my first referral was to a doctor in Boston where there are some of the best doctors in the world right but the doctor was only in the mood to give advice for procedure I guess. Scared and lonely feeling for sure Here is the most up to date reading I read, it is in PDF format. ( https://jamanetwork.com/journals/jamasurgery/fullarticle/212580#full-text-tab )
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