1. Kaley’s Story: The Search for a Diagnosis
By Emily Fishman
As 18-year-old Kaley Heelan began preparing
for high school graduation, she could not eat
without feeling nauseated. For the nearly eight
months that followed, she became progressively
worse, throwing up for hours after each meal.
Friends and family feared that she was
developing an eating disorder.
When Kaley’s mother, Diane, a registered
nurse, sought answers from Kaley’s pediatrician
and gastroenterologist, they focused more on a
possible psychological problem rather than
ordering imaging. After a battery of tests, Kaley
was diagnosed with idiopathic gastroparesis.
Kaley could not tolerate the anti-nausea
medication and, in the following months, her
now untreated symptoms and eating habits only worsened.
Long and frustrating months passed, yet neither Kaley nor Diane was satisfied with the
diagnosis. Out of desperation, Diane turned to a surgeon she had worked with previously whom
she had heard was operating on patients with similar symptoms. He agreed to see Kaley and
ordered an abdominal ultrasound and CT scan.
The tests revealed that Kaley had median arcuate ligament compression syndrome (MALS), a
condition in which the celiac ganglia and celiac artery are compressed, causing scarring of
nerves and restricted blood flow in the abdomen. With the severity of Kaley’s symptoms, surgery
was recommended for her.
In May 2015, Kaley underwent open arcuate ligament decompression. Now, she has returned to
healthy eating habits, exercising and her studies in social work at Western Connecticut State
University.
Since MALS is a little known condition and not routinely screened for with the diagnosis of
idiopathic gastroparesis, Kaley and Diane have turned to promoting awareness and changing
perceptions of MALS in the medical community. Their experience is not unusual. Many rare
disease patients go for years without a diagnosis, and it is not unusual for the search for diagnosis
to focus prematurely on psychological problems.