Imagine living with a never-ending stomach ache. Everything from eating a sandwich to taking a walk triggers intense pain.
Patients typically suffer through dozens of tests with no diagnosis. Some are even suspected of having an eating disorder.
However, one doctor is providing answers and relief to patients who have nowhere else to turn.
Every coin Susannah throws in the fountain carries a wish, not for a new iPod or outfit, but a life without pain.
"It was just really agonizing pain," says Susannah, a patient suffering from abdominal pain.
Constant, intense abdominal pain forced her to give up gymnastics and miss 60 days of school. It hurt to exercise and sometimes eat.
The diagnosis is a big question mark.
"Day after day, nobody knows what's wrong," she says.
"It was heartbreaking. I think our biggest fear was that they'd never figure out the cause of the pain," says Jeff, Susannah’s father.
After six months of cat scans, MRIs and blood tests, the family found Dr. Donald Liu. He sees patients like Susannah from all over the country.
"They're labeled as being crazy, this is all in your mind, or they're labeled as anorexic, or they have an eating disorder, and that's a very common thing," says Dr. Liu, chief of pediatric surgery at the University of Chicago.
The answer for many is MALS -- Median Arcuate Ligament Syndrome. The main artery that supplies blood to the digestive tract is crooked because it's being squeezed by a ligament. That cuts off the blood supply needed for digestion.
Dr. Liu says it's not rare -- just rarely diagnosed.
"There's a whole population out there who would certainly qualify for us to look at this," he says.
In a minimally invasive surgery, Dr. Liu cuts the ligament that's crushing the artery. It springs back into shape and blood flows freely.
Six months after surgery, Susannah can't wipe the smile off her face.
"It's just great to have our family's life back," she says.
Dr. Liu says stomach pain while eating is the main symptom of MALS, but it's a mysterious disorder that could also cause stomach pain during exercise.
He says 75 percent of his patients feel immediate relief after surgery. For others, it could take six months or longer for the pain to go away.
BACKGROUND: Median Arcuate Ligament Syndrome, or MALS, is a medical condition that may result in significant abdominal pain, according to the University of Chicago. The pain is attributed to the compression of the celiac artery by the median arcuate ligament, which can compromise blood flow needed for digestion. It can cause abdominal pain shortly after eating meals and exercising, and it can also cause weight loss.
DIAGNOSIS: Getting a diagnosis of MALS can be a long journey for many patients. The condition typically presents itself in teenagers and young adults. Sometimes, they are misdiagnosed as having irritable bowel disease or Crohn's disease. Some young patients are even sent to psychologists, because doctors think they have some kind of eating disorder.
Ultrasonography and Computed Tomography angiography along with 3-D imaging are used to give patients a definitive MALS diagnosis at the University of Chicago. These screening tests allow doctors to determine whether or not patients suffer from the typical narrowing of the artery that supplies blood to the digestive tract. It often looks like a hook, or crinkled hose, cutting off blood supply needed for digestion.
TREATMENT: At the University of Chicago, Dr. Donald Liu performs a laparoscopic surgery to ease the pain. It's done through a few tiny incisions in the stomach. Dr. Liu cuts the ligament, so it no longer crushes the blood vessel, and it springs back to the correct shape and blood flow returns to normal. It typically restores the patient's ability to eat and exercise, and in the majority of cases, alleviates the pain.
MISDIAGNOSIS: Dr. Liu says the condition may not be rare, just rarely diagnosed. "Patients get other labels, and that's the hardest part about it. One is they're labeled as being crazy. This is all in your mind, and that's the hardest thing to deal with especially if there's something there. Or, they're being labeled as anorexic, or they have an eating disorder, that's a very common thing," Dr. Liu told Ivanhoe.
Dr. Liu believes MALS is a condition that doctors need to look for when a patient comes in and complains of abdominal pain, especially linked to eating. Dr. Liu says young adults and teenagers may be particularly susceptible to MALS when they go through growth spurts.
FOR MORE INFORMATION, PLEASE CONTACT:
Donald Liu, M.D., Ph.D.
University of Chicago