Median Arcuate Ligament Syndrome (MALS)

@etr - Welcome to Mayo Connect! There are many of us here with a MALS diagnosis.
First of all, I can’t believe you were told that you are not a candidate for surgery because you can eat!! It is true that many lose weight, because they are afraid to eat, but many eat and suffer with pain. I did. My pain was very bad before surgery.
You definitely have to get another opinion on your condition.
In my case I was told that surgery might not mean 100% cure. I decided to go through with it- I could not live like that anymore. I did very well- no more pain. I had to have a stent placed to keep the celiac artery open - it was kinked by the ligament.
I have IBS too, but I can distinguish that from other conditions.
You are better off going to a major university medical center or Mayo Clinic.
Please get back to us if you make a decision to get a 2nd opinion!

You can definitely have MALS and still be able to eat. I know because I'm one of those cases. I do however get severe stabbing pains and nausea during and after intense exercise. Anything that gets my blood pressure up will do it, as well as sleeping on my right side or sitting too long. It is true that most diagnosed cases present with inability to eat, but it's not exclusive. A lot of what you're describing does sound a lot like SIBO to me though, which I've also had. I've taken rifaximin, got better, and then all the GI symptoms came back. Tried 2 rounds of antimicrobial herbs, stuck to the FODMAP diet, and now a soil-based probiotic and I'm doing much better with that. I'd definitely rule out SIBO because it can be cured without surgery. MALS also can upset GI functioning, because the celiac nerves are also being compressed. Usually that means pain/nausea, but IBS and SIBO symptoms seem to go hand in hand with MALS for a lot of people. It makes me wonder if a celiac plexus nerve block might be a good test for you.

For your sake though, I hope it is not MALS and is something else you can figure out because MALS surgery is no joke. I had my first surgery in 2015 and all they did was release the ligament laparoscopically, only to have symptoms slowly return about 2 years ago. There are multiple theories and approaches to this surgery, so it's all on the patient to research and decide which surgeon and method to trust. I would continue pressing your GI docs or find one with a little more curiosity and compassion, until you reach a clear diagnosis.

I have periodic "attacks" (5 in the last 12 months but started 15 years ago and only an attack every few years until now) that all follow about 30 minutes after a meal and have the same progression: First abdominal cramping, gas pain, nausea, back ache lower flanks, cold sweat, light headedness, extreme weakness, tingling arms, vomiting, diarrhea. The attack usually subsides after the diarrhea. Then I am wiped out but all symptoms pass. Does this sound like MALS? I've had extensive testing done by a GI but nothing has turned up. I would appreciate any feedback about others' experiences. Thank you.

@lme It definitely sounds like MALS attacks. Can you tell me what specific tests have been done?

Thank you for your quick reply. I have had bloodwork (CBC, liver and kidney function, etc.), urinalysis, fecal sample, CAT scan w contrast. I am scheduled for colonoscopy and upper endoscopy in two days. Any recommendations? Also, I can't figure out what triggers an attack. They seem random, except that they are becoming more frequent and severe, debilitating. I am hesitant to eat.

With MALS, there’s really no rhyme or reason why it triggers attacks. I tried (for many years) to see if it was different food, keeping a journal and it really made no difference. What did help was to eat small servings throughout the day. FYI-most GI doctors don’t deal with MALS. You need to find a vascular doctor that believes it’s possible to have MALS, most think it’s too rare. For MALS, the ct with contrast needs to be done with taking a picture on inspiration and expiration both so they can see the difference. Also, it could be neurogenic MALS, which means it’s not impeding the blood flow, the ligament is pressuring the celiac artery when you eat. I hope you can find answers.

Mine started with attacks too. Before that I'd only have mild nausea after eating that might have been MALS, but it wasn't until one night when it greatly intensified into pain/nausea that lasted throughout the next day that sent me to the ER. That happened several times, 4 ER trips total. I had every GI test done and everything came back normal until an RN in an urgent care office got me an appointment with a young GI specialist who ordered the doppler ultrasound that found MALS.

I thought it was my gallbladder, to be perfectly honest. But after 2 regular ultrasounds and a HIDA scan it was clear that it wasn't. Usually gallbladder attacks result from a fatty meal. MALS doesn't follow that pattern. I suspect my trigger was certain types of exercise. In hindsight, several of my severe attacks happened hours after I'd done stomach crunches or went on a long bike ride, especially if I had a snack during the ride. But everyone's different. Some people have more pain but can eat. Others have very little pain but can't eat at all. And yes, GI docs have a tendency to ignore MALS and assume there's something functional going on with your GI tract.

Hello… So I’ve had three CT angiogram’s with and without contrast, abdominal ultrasound, abdominal aorta ultrasound, HIDA scan,gastric emptying transit/motility study, two endoscopy’s and two colonoscopies, EKG, chest x-ray’s, lots of bloodwork

The three CT angiogram‘s confirmed MALS The last report saying “near occlusion versus occlusion of the celiac trunk due to MALS”.When I asked my primary care what that meant he said he didn’t know. He had never heard of MALS.

Hello… Thank you for your information… I did work with a excellent nutritionist and did the SIBO protocol with antibiotic, herbal, and have been eating low FODMAP for the last three years. I use bitters and or enzymes before I eat a meal. I find that probiotics are a bit hard for me to take so I drink fermented liquid for a probiotic.
Thanks again!