Patients typically suffer through dozens of tests with no diagnosis. Some are even suspected of having an eating disorder. But 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 I-pod or outfit but a life without pain. "It was just really agonizing pain, and it wouldn't go away, and I just couldn't bear it," Susannah told Ivanhoe.
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," Susannah explained.
"It was heartbreaking. I think our biggest fear was that they'd never figure out the cause of the pain," Jeff, Susannah's Dad, said.
After six months of cat scans, MRI'S 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," Dr. Liu explained. "That's a very common thing."
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," Dr. Liu said.
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.
A family who stuck together to find answers and ending up getting a lot more.
Dr. Liu says stomach pain while eating is the main symptom of MALS, but it's a mysterious disorder that could also present itself as stomach pain during exercise.
It is often mistaken for Crohn's disease or other irritable bowel problems. He says three-quarters of his patients feel immediate relief after surgery. For others, it could take six months or longer for the pain to go away.
If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Melissa Medalie atmmedalie@ivanhoe.com
