From the moment Jillian McGovern was born, every breath has caused a little bit of damage in her abdomen.
It’s damage that didn’t become apparent until about two years ago, after abdominal surgery, when suddenly taking a bite of food or sipping a drink of water started causing excruciating pain and violent bouts of vomiting for the 32-year-old Lake Nebagamon woman.
It took a year and a half, a feeding tube, the loss of 50 pounds, travel to the Twin Cities and other places to meet with specialists, and countless trips to emergency rooms in the Twin Ports — sometimes as many as two in one day, four times a week — and still she had no answer to what the mysterious ailment could be.
“People don’t like what they can’t see, and doctors don’t like what they don’t know and can’t diagnose … I was being called a drug seeker. I was being called a faker. I was being told I was starving myself. You name it — it was said about me,” McGovern said.
“No one knows my wife better than me,” said Mark McGovern, her husband since 2012. “My wife doesn’t drink, doesn’t smoke, all she eats is health foods that don’t have fat. For a doctor to say to me that she’s faking it — all hope was lost.”
A year ago, Jillian McGovern was diagnosed with superior mesenteric artery syndrome and underwent a gastric bypass surgery, which she said improved her condition “a little bit,” but the pain soon returned.
It wasn’t until McGovern and her family were watching a show called “The Resident” when the mystery started to unravel.
“There was a guy on the show that had a lot of the same symptoms I did,” she said. So she started to research the condition, median arcuate ligament syndrome, and found the doctor who diagnosed MALS as the cause of Jillian McGovern’s chronic pain.
“The problem with MALS is once it starts, it doesn’t stop,” said Dr. Richard Hsu, the vascular surgeon in Danbury, Conn., who diagnosed McGovern. “Once the nerves become inflamed, they get swollen and if they’re sitting in a tight space, it makes that space even tighter. It may start out pretty benign, waxes and wanes, but over a period of months or years, the pain becomes significantly worse to the point where it’s constant. They’re in pain all the time.”
The underlying anatomical problem, present at birth, is the diaphragm sits too low in the body and is pushing up on the celiac artery, pinching it and causing poor blood flow, Hsu said. He said nerves in the area, the solar plexus and celiac ganglia, are also affected.
“What is pushing on that artery is pushing on those nerves,” Hsu said. “What we see in these patients is that the nerves are all inflamed … What we see in these patients is something happens, whether it’s a systemic inflammatory event or there’s trauma to the belly. Something happens that triggers the inflammation. Chronic pressure on the nerves will cause inflammation.”
And the pain it causes prevents suffers from eating and drinking normally.
McGovern estimates she eats about 300-500 calories a day.
“I know it sounds bad, but basically I live on baby food and freeze-dried foods I can dissolve in my mouth.” She said. “I feel a million times better if I don’t eat at all.”
The pain is the equivalent of having late-stage pancreatic cancer because it’s the same nerves involved, Hsu said.
“It’s the worst pain you can imagine, times 10, and that’s what it is,” Jillian said. “It’s just black. That’s the color of the pain.”
Mark McGovern said Jillian is the strongest woman he knows, but she’s never free of pain.
“She cries in her sleep because she’s in pain and she doesn’t even know it,” her husband said. “It just breaks my heart.”
But there is hope for Jillian.
Mark McGovern said he was at work when he got the call letting him know Jillian is scheduled to have surgery on Oct. 2 in Connecticut to alleviate the pain. While he knows there is a long road to recovery ahead, he said it was a relief to finally have some hope.
“It’s been hard on the family,” Mark said. “We have four kids (ages 7, 8, 13 and 15) and it’s been really hard on them. They’re just not the same since Mom’s been sick.”
Traditionally, median arcuate ligament syndrome is treated with a minimally invasive or open operation to relieve the compression on the artery, according to the Cleveland Clinic.
The success rate for the traditional treatment is a little under 50% according to the literature, Hsu said, which is why he doesn’t treat the condition as a blood flow issue.
“My approach to it is that there’s nothing wrong with the blood flow to the stomach,” Hsu said. “As vascular surgeons, we know that when one of the mesenteric arteries do not produce significant ischemia to cause symptoms in run-of-the-mill vascular patients. So my approach is not to fix the artery … I go in there and remove the low-lying parts of the diaphragm that are impinging on these nerves. So I remove those bands that are sitting too low in the body, and once I do that, I look at the nerves and I remove the scarred and bad.”
It’ a procedure he’s used on about 300 MALS patients from across the country so far.
“Our success rate is 92% — that’s why I believe strongly this is a nerve issue,” Hsu said.
That gives the McGoverns hope that Jillian could soon be on the road to recovery.
But Jillian still worries about how the family is going to pay for it after she spent most of the last month in the hospital battling sepsis after a fall in which she broke her upper jaw and cut her upper lip.
"I feel so guilty for being sick," Jillian said. "It cost everyone so much."
But Mark remains hopeful, working as many hours as he can to build up time so he can be with her when she undergoes surgery next month.
“Prayer always helps,” Mark McGovern said. “That’s all we have for hope.”
A GoFundMe site was set up to help cover expenses.