When Toby Gilbert was 6 years old, he started complaining of abdominal pain. The pain became so unbearable that he would cry out that he didn’t want to live anymore. “He would just be in the bathroom saying, ‘Something ripped. Something tore. I think this is the end,’” Toby’s father remembers.

Heartbroken and desperate for answers, his parents, Tedd and Lorraine Gilbert, took him to the ER and consulted multiple doctors. Despite undergoing a battery of scans and receiving a range of diagnoses—including irritable bowel syndrome (IBS), abdominal migraines, and anxiety—none of the treatments offered any relief.

After exhausting their options, they finally found a doctor who truly listened and refused to dismiss Toby’s symptoms. That surgeon, Dr. Richard Hsu, uncovered the answer to his medical mystery: a vascular compression condition known as median arcuate ligament syndrome (MALS).

What Is MALS?

MALS is a rare vascular condition that happens when the median arcuate ligament, a band of tissue in the upper belly area, compresses the celiac artery, a major blood vessel that supplies blood to the stomach. This compression can restrict blood flow to the stomach and other abdominal organs, leading to debilitating pain, nausea, and difficulty eating.

“When someone has MALS, the pain they feel increases when their stomach is full. It doesn’t matter what it is full of—air, food, or liquid,” Toby’s mother, Lorraine Gilbert, a registered nurse, told The Epoch Times. “Any time the stomach is full, it puts more pressure on the celiac ganglion and the nerves. Likewise, if the intestines are full, it can increase pressure as well.”

Some specialists like Hsu believe that MALS pain comes from inflammation of the celiac ganglion, a bundle of nerves near the celiac artery. He explains in a video that the diaphragm sits too low in the body and pushes on these nerves.

In 2017, Hsu performed his first pediatric MALS surgery—with Toby as the patient.

Portland, Oregon-based general surgeon Dr. Jeffrey Watkins emphasized the immediate effects of surgery. “You can see the blood vessels inflate as soon as we surgically release the compression,” he told The Epoch Times.

Challenges in Diagnosis

Toby’s experience illustrates the challenges in diagnosing MALS. Initially, he suffered from severe post-meal pain that escalated into unbearable episodes that left him unable to function normally. Some doctors told his parents it was constipation, prescribing Miralax, but the relief was brief, and symptoms would quickly return, his mother said.

Although he tested negative for celiac disease, his parents also tried putting Toby on a gluten-free diet, which seemed to help temporarily. A FODMAP diet, low in certain sugars poorly absorbed in the small intestine, also decreased some inflammation, but symptoms persisted.

The problem with accurate diagnosis lies in MALS’ ability to mimic other conditions, such as IBS and Crohn’s disease. Standard gastrointestinal tests often fail to detect it, leading to a frustrating cycle of misdiagnosis.

Advances in diagnostic imaging, such as Doppler ultrasound, computed tomography angiography, and magnetic resonance angiography, all used to visualize blood flow and detect abnormalities in blood vessels, have improved the ability to identify MALS.

A 2023 peer-reviewed study highlighted that MALS is a rare condition affecting about two in 100,000 people. It significantly affects quality of life but often goes undiagnosed for years due to its rarity and similar symptoms to common digestive issues.

Some experts, like Watkins, even believe the condition is not so much rare as it is missed. “It’s rare until it happens to you,” he said.

Treatment Options

Once diagnosed, patients with MALS have several treatment options, though the path to recovery can vary.

Surgery

The most common intervention is surgical decompression, where the surgeon releases the median arcuate ligament to alleviate the pressure on the celiac artery and surrounding nerves. Some surgeons, like Hsu, remove inflamed ganglion nerve tissue to sustain pain relief.

A 2022 review on the efficacy of surgical treatment indicated that most patients experience over 70 percent symptom relief after decompression surgery.

Nerve Blocking

Another procedure called a celiac plexus block can serve as both a diagnostic tool and pain relief.

Doctors inject a local anesthetic near a bundle of nerves called the celiac plexus in the upper abdomen, blocking pain signals from reaching the brain.

Other Methods

In addition to surgery, some patients benefit from dietary modifications, physical therapy, and pain management strategies. The MALS Foundation emphasizes the importance of individualized care plans to achieve the best outcomes.

However, despite treatment, some patients still experience pain.

“I’m a few months out of surgery, and some things are markedly better, and some aren’t,” Claire Campbell told The Epoch Times. She was finally diagnosed after 3.5 years and seeing seven specialists. “It’s really hard to think that all this work for a diagnosis and surgery could still end with you experiencing symptoms, but I’m just taking one day at a time.”

Why Awareness Matters

Toby’s story, like that of many MALS survivors, underscores the critical need for greater awareness among both patients and health care providers. Misdiagnosis and delayed treatment not only prolong suffering but also lead to serious complications like malnutrition and mental health challenges.

The journey to a MALS diagnosis is often fraught with obstacles. Patients frequently encounter resistance and become frustrated with health care professionals who may be unfamiliar with the condition. “Medical gaslighting is one of the most difficult hurdles I’ve had to go through,” MALS patient Nikki Koga told The Epoch Times. “Most doctors are not even aware of MALS, and when you bring it up as a potential cause of your symptoms, they completely dismiss it, not making an effort to learn about it.”

This lack of awareness can have devastating consequences. Michelle Smith, whose son endured seven years of misdiagnosis and suffering, shared with The Epoch Times: “He lost his teenage years due to fatigue and other debilitating symptoms related to MALS, such as painful eating, nausea, and digestive dysfunction.”

Support groups and online communities, such as MALS Pals, have become invaluable lifelines for families like Toby’s. These platforms provide much-needed validation and resources, offering a sense of community and understanding for those navigating the challenges of living with MALS. “The MALS Pals [Facebook] page has been a godsend,” Smith shared. “This June will be two years for my son being a MALS survivor.”

Advocacy organizations like the MALS Foundation and grassroots efforts on social media are working tirelessly to bridge the gap in awareness. By sharing patient stories, hosting awareness campaigns, and providing resources for medical professionals, these groups aim to improve the diagnostic process, reduce stigma, and ultimately enhance the lives of individuals living with MALS.

A Journey Toward Hope

After surgical decompression, Toby’s condition improved significantly. “Toby is doing so much better. He is loving life now,” his father told The Epoch Times.

Today, Toby’s family is passionate about raising awareness for MALS. They participate in online support groups and advocate better education among health care providers, hoping to inspire others to keep seeking answers.

“When doctors tell you that your child just has anxiety, or when they think you, the parent, just want attention, then you understand why we want to share Toby’s story,” Lorraine said, adding, “We simply don’t want other children and families to have to go through what we have been through. Rare diseases and conditions do exist.

“Sometimes you have to fight to be heard.”