Well Stories

This Woman Couldn't Eat for Years Because of a Medical Mystery

January 12, 2018
Courtesy of Mackenzie Hild

It wasn’t that Mackenzie Hild wouldn’t eat. She wanted to, desperately. But she couldn’t—at least, not without experiencing severe abdominal pain for hours after.

An undergraduate at Harvard hoping to pursue medical school, Hild was working at a medical clinic and conducting research in Africa. She was taking medication to prevent malaria and thought it must be upsetting her stomach. Along with the pain, she was losing weight, but she figured her body would recover after she stopped taking the drug.

It didn’t. By the time Hild returned home, she had lost 30 pounds. She was hospitalized and forced to stop attending classes. When doctors couldn’t find anything wrong with her, they moved her to the floor for patients with eating disorders.

Except, of course, Hild didn’t have an eating disorder. But she couldn’t convince her medical team that was so.

Nearly a month of treatment did nothing to help Hild’s pain. Neither did subsequent doctor’s visits. So, for the next five years, Hild lived off a feeding tube. She managed to finish college, volunteer at a shelter for homeless youth and complete a global health fellowship in South Africa.

“I realized that even if I was somehow impeded from having a normal life, I could still help people and do something meaningful. I think that’s what got me through,” Hild says.

Mystery solved

Still, not being able to eat comes with complications, both medical and social. Hild had visited specialists throughout the country looking for answers, but found none. The possibility of a cure seemed to grow slimmer and slimmer after five years of dead ends.

Help came from an unlikely source: a medical student. While hiking, Hild’s parents serendipitously met a doctor who took interest in Hild’s case and passed her information along to his students. After researching possibilities, one student found a likely candidate: median arcuate ligament syndrome, or MALS.

Hild had been tested for this condition before with negative results. She was tested again, however, and found out that she did, in fact, have MALS; the previous ultrasound hadn’t been administered correctly.

After a MALS specialist in Chicago agreed to take her case, Hild flew in from South Africa after finishing her fellowship and received minimally-invasive surgery to correct the problem.

That was in March 2015. Since then, Hild has been able to eat and her pain hasn’t returned.

A rare and contradictory condition

MALS, also called celiac artery compression syndrome or Dunbar syndrome, is what medical professionals refer to as a diagnosis of exclusion, something only considered after all other more likely possibilities have been ruled out, says Benjamin Starnes, M.D., chief of vascular surgery for UW Medicine who has operated on patients with MALS.

“It’s a rare syndrome. I’ve been practicing vascular surgery since 1998 and I’ve probably only seen a half-dozen cases,” Starnes says.

MALS occurs when the median arcuate ligament, located underneath the diaphragm, compresses the celiac artery, which controls blood flow to the stomach. This compression causes nausea, vomiting and abdominal pain, along with weight loss—but only in certain cases. Some people have artery compression without the symptoms. Why the same anatomical anomaly is harmless for some and debilitating for others remains a mystery, Starnes says.

What causes the compression is also a bit hazy, Starnes admits. Since MALS often presents when someone is in their late teens or early twenties, the thought is that the ligament compression slowly develops and is then triggered by a sudden event, such as substantial weight loss.

A cure—but only for some

The surgery to correct MALS is relatively simple and involves cutting the ligament and relieving the compression. However, any procedure performed near delicate arteries and blood vessels carries some risk. Starnes said he has seen patients die from the procedure, particularly if they have other medical conditions that cause complications, like a connective tissue disorder.

“Patients are often willing to take the risk because MALS is so debilitating,” Starnes says.

Though surgery provides near-immediate relief for some—like Hild—it doesn’t cure everyone. About half of patients who undergo MALS surgery won’t experience any lessening of symptoms, says Starnes.

Because of this, some doctors think MALS doesn’t exist or is actually a different condition. Rather than a vascular issue, some doctors think MALS is a neurological problem and posit that cutting into the celiac ganglia, a bundle of nerves in the abdomen that stimulate digestion, will relieve MALS symptoms.

MALS patients commonly undergo a plethora of tests because the syndrome is so rare and controversial. And since the condition is more common in young women, bias can come into play.

“Some doctors will say, ‘We know what’s going on, you’re bulimic or anorexic,’ and will think of all these other things associated with young women and abdominal pain except for this,” Starnes says.

Developing anxiety or fear from not being believed or listened to—and not knowing what’s going on in your own body—can also happen.

“I didn’t know how to convince them this is not in my head,” Hild told The Washington Post of her experience seeking answers from so many different doctors. “And the more I tried to convince them, the crazier I sounded.”

Paying it forward

Now a third-year medical student at the University of Washington School of Medicine, Hild recognizes how critical future doctors’ roles can be in helping solve medical mysteries.

“We have time that residents and doctors don’t necessarily have. As a med student now, I take that seriously,” she says. “If I get a patient who needs extra help, I hope I can give back in that way.”

Her experience also made her realize that medicine doesn’t have all the answers, and that, while her story has a happy ending, some don’t. Since she knows what it’s like to be dismissed by healthcare providers, she says she now works harder to involve patients in their own care.

“The more a patient can be part of the team, on equal footing with the doctors, the better,” she says. “At the end of the day, it’s their body.”