What is MALS?

This page over at the MALS Foundation website has the full medical description of MALS (Median Arcuate Ligament Syndrome.)

The short answer is that MALS is condition of restricted blood flow to the gut and certain organs caused by a low diaphragm and a ligament that compresses the celiac artery.

The resulting low blood flow and damaged nerves can cause a host of problems in the body, but especially in the digestive system.

How common is MALS?

About 1 in 25 people have the anatomy for MALS. But only 1 in 666 experience noticeable symptoms.

MALS is congenital — meaning that you’re born with the abnormal physical structure and likely inherited it.

How is MALS diagnosed?

MALS symptoms typically appear gradually over time, making it a challenge to diagnose at first. It typically takes 3 years to get an accurate diagnosis. Most stories I’ve encountered took more like 10 years.

The definitive diagnosis for MALS is captured by a CT scan with contrast. Two scans are done, breathing in and holding your breath, then exhaling fully and holding it.

My scan showed 60%-70% compression of the artery when exhaling. There’s no compression when I inhale fully though.

So I just need to never exhale and I’ll be fine!

What does MALS look like?

MALS can show up in a wide variety of ways affecting the intestines, liver, kidneys, gallbladder and even the brain.

Surprisingly, some people actually first experience mood / brain disorders before they have gut pain.

My first symptoms 10 years ago were actually exercise intolerance where my body would suddenly give out due to low blood pressure and extreme fatigue only 5-10 minutes into a work out. I’ll post more about my symptoms journey later.

But the most typical symptoms of MALS are:

• Abdominal pain that cannot be explained via endoscopy, colonoscopy, or diagnosed as typical gut issues

• Chronic nausea and vomiting

• Fatigue and/or blood pressure drop after eating (post-prandial hypotension)

MALS often appears along with other conditions that affect vascular structures, joints and ligaments like EDS (Ehlers-Danlos syndrome.)

MALS can also occur along with dysautonomic disorders like POTS (postural orthostatic tachycardia syndrome) — where the body’s automatic nervous system malfunctions.

(I don’t have EDS or POTS.)

What does MALS feel like?

MALS pain is severe for some people, often putting them in the Emergency Room with stabbing gut pain, nausea to the point they can’t hold down water, or problems from becoming malnourished.

My pain hasn’t gotten that severe. For me, MALS pain has gotten worse over time and feels like someone is constantly shoving their fist into my upper gut, about 2-3 inches below my sternum.

It’s near-constant pressure, pain, nausea and — as my dear Granny used to say — “malaise”. I just feel gross and miserable pretty much 24/7.

The only time I get relief is when I don’t eat for 4 or more hours. Which is why I dropped from 165 lbs down to 129 at one point. People with MALS grow to dread eating. We become “afraid-atarians”—scared to eat almost everything.

To get by these days, I generally eat pureed food or special liquid formula made for people who have feeding tubes.

How is MALS treated?

Ultimately, MALS is treated by surgery to clip the problematic ligament that is restricting blood flow. Often, the surgeon will also remove any damaged nerves.

The surgery is done either laparoscopically or open. From my research, it seems like the more experienced and successful surgeons seem to prefer open surgery and are more aggressive at removing damaged nerves.

But before surgery can be done, patients typically need to have a celiac plexus nerve block. Needles are inserted through the back, past the spine, into a bundle of nerves in the center gut. An injection of pain killers and steriods numbs the nerves, providing pain relief for anywhere from days to months. If the procedure works, its considered further confirmation of MALS and provides confidence that surgery will provide long-term relief.

Typically, most MALS patients can (finally!) eat a pretty normal diet pretty soon after the surgery. It’s common to see social media posts of patients in their hospital bed, smiling with a big plate of food. But it’s also common for them to be able to eat only small amounts at first because their stomachs have shrunk from being on liquid diet or small meals.

Do you have more questions about MALS? Ask it in the comments and I’ll do my best to answer!