Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

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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@etr - Great that you will be able to see Dr Hsu. I’m sure it won’t be long then before you’ll have the surgery and relief.
Sorry you lost your gallbladder in the process.
Please post after seeing Dr Hsu! Very exciting.

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@astaingegerdm

@etr - You do have a diagnosis of MALS. What now? Consultation with vascular surgeon and possible GI surgeon too. Do you have a major medical center near you? University best.

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I had a consultation at Stanford in Palo Alto California with a vascular surgeon that was not a MALS specialist. She said that the MALS was not causing my symptoms. This was about three years ago. This is when I was trying to figure out if I should have my gallbladder removed. I did end up having my gallbladder removed because she said it would help my symptoms… Unfortunately, nothing has improved… Actually only gotten worse. I did have a phone consultation with Dr.Hsu at Stamford after my gallbladder surgery and he said that my symptoms sounded like MALS and he would be happy to meet with me as he suggested symptoms will get progressively worse.

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@lme - To my knowledge, endoscopy and colonoscopy would not show anything that confirms MALS.

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@astaingegerdm

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

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Thank you for the replies! I am scheduled for a colonoscopy and upper endoscopy tomorrow. Is there anything they can look for during these two procedures that might indicate MALS? Otherwise, it sounds like the CT scan (taken on a exhale) is key.

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@etr - You do have a diagnosis of MALS. What now? Consultation with vascular surgeon and possible GI surgeon too. Do you have a major medical center near you? University best.

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@jhmontrose

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.

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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!

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@etr

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

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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.

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@astaingegerdm

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

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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

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@lme

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.

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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.

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@lme

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.

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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.

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