Median Arcuate Ligament Syndrome (MALS)

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.

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

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.

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.

@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!

Oh don't you just love it when someone says you "JUST HAVE IBS" as if it's not important, doesn't cause pain, doesn't change quality of life etc. etc. I do appreciate (most) doctors but it's 2021 !!!! By now should someone have to go through all of this, including surgery, and still suffer? And if I hear any more that IBS is brain-gut I will scream. How about its gut-brain, as in, something is wrong with our gut and it is saying to the brain: hey, I hurt, can't you figure this out for me?

Thank you so much for your reply! I found that group a few years ago but it was very overwhelming to read what people were going through. I no longer do Facebook at all. I’m hoping to find someone here that may have my similar symptoms and what they have done for relief without surgery. Thanks again

Hi! I’m so sorry for all you’re going through. I had mals surgery a year ago and no longer have the knife stabbing pain. My suggestion would be ( if you use Facebook) to go to a group called Mals Awareness. There’s loads of information about mals. People are so wonderful and can help with their experiences. I couldn’t have gone through this without them.

Hello…
I just discovered this group and was hoping to get some feedback from others that have similar symptoms with their MALS.
I was diagnosed about three years ago by accident in the emergency room. It was determined that I was having a gallbladder attack and by chance the CT angiogram saw that I have MALS. I also had 2 follow up CT angiogram‘s that confirmed MALS.
I was diagnosed with IBS about 15 years ago and was on acid reducers that made me feel horrible… But like most people I wanted to follow my doctors advice and kept taking it until I couldn’t stand it anymore.
My symptoms are constant bloating, burning feeling in my stomach and liver, severe pain between my shoulder blades, yellow stool, constipation, diarrhea, fatigue, chronic SIBO, anxiety
Like most people on this group I have spent years and thousands of dollars to try and figure out the root cause of my problems. I had my gallbladder removed because it was not functioning properly. Unfortunately… Nothing has changed.
My gastroenterologist and primary care dr. believes that my symptoms are just IBS and my pain is visceral. I am not a candidate for surgery because I can eat.
Thank you in advance for any information or helpful tips for people that have similar symptoms as me
Erin

Hi @jayhawk57

Something I should have mentioned is if you are having difficulty eating make sure you see a dietician. I didn't see a dietician straight away and suffered the consequences. I became extremely deficient in various vitamins and minerals like vitamin c, vitamin d and iron; I had gum disease multiple times and lost teeth. I had terrible headaches, extreme brain fog, lethargy and the list goes on.

Although the dietician didn't know anything about MALs, the first thing she did was prescribe high dose multivitamin and mineral complex, (Forceval Capsules.) Educating the dietician on the effects of foods on MALs sufferers means there is another clinician on the care team and will help others who present with MALs symptoms.