That's what happened for two unlikely patients. Their symptoms that had been stumping doctors turned out to have an unusual cause.
Jenna Mosconi is a high school softball pitcher. Lexi Silvers is a sophomore in college.
The girls live a couple of towns away, don't know each other, but strangely enough had something in common that would later prove to be unusual: severe and unexplained stomach pain.
"It was just so painful to eat that I couldn't do it," said Alexis Silvers, MALS patient.
"I would be at lunch and have half a bagel and I would feel really sick," said Jenna Mosconi, MALS patient.
Both ladies say they wanted to eat but even the smallest of meals would cause severe abdominal pain.
Everything from heartburn to digestive disorders was considered but all tests came up negative. Family and friends even started to suspect anorexia.
"That's when there was a lot of weight loss and that was really scary and very frustrating because we had run the gamut of all the tests," said Sherry Silvers, Alexis' Mother.
"She tries to eat something and lays on the couch in a fetal position so it's not an eating disorder," said Lou Mosconi, Jenna's father.
It turns out Lexi and Jenna had something else in common: Pediatrician Cynthia Chou.
"In the symptoms they were describing to me, it just didn't feel right, didn't sound right so I knew we had to delve a little further into things that were less common," said Dr. Cynthia Chou
A special CT scan and 3D imaging at the University of Chicago Medical Center first solved the mystery for Lexi. In an ironic twist another scan showed the same problem with Jenna.
Both girls had a mishapen artery that is supposed to supply blood to the digestive tract.
You can see from Jenna's scan that the artery is crooked because it's being squeezed by a nearby ligament. That compression can restrict blood flow. This unusual problem is called median arcuate ligament syndrome or MALS.
"It requires major energy to digest food. There is not enough blood flow to do that and the person has tremendous pain," said Dr. Donald Liu, pediatric surgeon, University of Chicago Medical Center.
Dr. Liu says not a lot is known about this syndrome. It's diagnosis and treatment are considered controversial because there's never a guarantee that treating this issue will eliminate symptoms.
Dr. Liu says for patients like Jenna and Lexi laprascopic surgery was the best choice. Small keyhole incisions were made, the ligament was then cut, freeing up the compressed artery and restoring blood flow.
"I knew that it had worked when I woke up from surgery and was able to eat an entire piece of carrot cake that same day and no pain," said Lexi.
"I got out to the hospital the day before Thanksgiving and I went and ate a lot on Thanksgiving and here was no pain," said Jenna.
Dr. Liu thinks we will be hearing more about MALS in teenagers and that a sudden growth spurt may be the cause.
"There might be a pattern that it could be young teenage girls. Something we want to follow going forward. It does raise a red flag when we see this now," said Dr. Liu.
Advanced imaging is now making this easier to detect, which is increasing awareness. Some doctors are even suggesting that patients with eating disorders also be screened for median arcuate ligament syndrome.
Right now mals is still considered rare and can show up at any age.
More information:
Donald Liu, MD, PhD
Surgeon-in-Chief, University of Chicago Comer Children's Hospital
dliu@surgery.bsd.uchicago.edu
Office Phone: (773) 702-6175
Office Fax: (773) 702-1192
Office Postal Address
University of Chicago Medical Center
5841 S. Maryland Avenue, MC 4062
Chicago, IL 60637
Christopher Skelly, MD
Assistant Professor of Surgery
Department of Surgery
University of Chicago Medical Center
Vascular Surgery
Practice Location
Center for Advanced Medicine
5758 S. Maryland Avenue
Chicago, IL 60637
www.uchospitals.edu
Office Phone: (773) 702-6128
Office Fax: (773) 702-0863
Tina Desai, MD
Assistant Professor of Surgery
Director, Endovascular Services
University of Chicago Medical Center
Email: tdesai@surgery.bsd.uchicago.edu
Office Phone: (773) 702-6128
Office Fax: (773) 702-0863
Median Arcuate Ligament Syndrome: Evaluation with CT Angiography
Ligamentous compression of the celiac axis: CT findings in five ...
Median arcuate ligament syndrome: open celiac artery reconstruction and...
