Woman travels from Illinois to Baptist Health Floyd for treatment of rare condition

It’s difficult for most people to understand not being able to eat without getting sick, never feeling hungry, or having to deal with a feeding tube for nourishment.

Until just a few weeks ago that is what Maryellen Clark dealt with since 2017 when she was first diagnosed with Median Arcuate Ligament Syndrome or MALS — a rare condition that compresses the celiac artery. Clark underwent surgery that year to place a stent in the affected artery.

Though the procedure offered some initial relief, her health struggles were far from over.

Earlier this year things took a turn for the worse. Clark began experiencing severe pain in the same area where her stent had been placed. Testing revealed a different and equally rare condition: Superior Mesenteric Artery (SMA) Syndrome — a disorder in which part of the small intestine is compressed, making digestion difficult and painful.

Having both MALS and SMA during a lifetime is extremely rare.

As her condition worsened and frustration grew from not getting the results she needed, a family member’s suggestion led Clark to discover Baptist Health Floyd where surgeons Biruk Almaz, MD, and Kristofer Nava, MD, provided care that marked a turning point in her health journey.

Fast forward five months, Clark is back home in Olney, Ill., eating what she wants, not having to deal with a feeding tube and no longer feeling weak due to a lack of nutrients.

“I feel great,” she said. “I am so thankful. It’s a relief. I couldn’t eat food. I was never hungry and if I did eat it didn’t want to go down,” said the 39-year-old. “I lost 30 pounds in a month trying to find a doctor.”

Before traveling to Baptist Health Floyd she spent 23 days in another hospital and thought she was on the mend. But when she returned home, she had a new problem.

“I thought I was fixed when I came home but I wasn’t after several surgeries. I had internal bleeding, was in ICU and parts of my colon collapsed. I came home with a feeding tube and a doctor there said I would have to have a feeding tube for the rest of my life. I was also producing tons of stomach bile.”

Frustrated she headed to St. Louis for care but while sitting in the emergency room with her husband, she decided to make the four-hour drive to Baptist Health Floyd.

“After learning about my issues Dr. Almaz called me personally on my way to St. Louis. I was like ‘oh my gosh, a doctor is actually calling me personally. No doctor does that.’ Sitting in the waiting room (St. Louis hospital) I told my husband I didn’t want to stay there, I wanted to see Dr. Almaz. We called him and he said he would meet us. He was actually in surgery when we arrived but when he got out, he came straight to my room.”

Dr. Alamz quickly called Dr. Nava to review Clark’s case since it was more in his specialty. Following a series of tests Clark was headed to surgery to correct her issue.

“The surgery lasted five hours. They created a new opening for my stomach to empty into my small intestine. It is draining properly now, and I don’t have bile backing up. I came home with IV treatments, but I am done with those. I feel great.”

She praised Drs. Nava and Almaz.

“I feel completely different, like a real human,” Clark said. “I have never met doctors like them in my life, and I have been to a lot of doctors. I never had one of them sit down with me and not feel rushed like they had to get out of the room immediately. They answered every question I had. If I didn’t understand it, they would draw it for me. I even jokingly asked Dr. Nava to sign one of his drawings because he drew me so many drawings.”

She said the team of Almaz and Nava “saved my life.”

“They were amazing,” she said of the two doctors. “They saved not just my life, but my quality of life since I can actually enjoy food again without fear and not feel judged while in public with all my tubes and bags for feedings.”

She also praised the staff at Baptist Health Floyd. 

“Having to be left alone while my husband traveled back and forth to work and home to take care of the kids, having to leave me alone … I was scared,” Clark said. “So the staff making me feel safe and comfortable was really helpful.”

Now home, eating and on the mend, Clark is preparing to return to work as an x-ray technologist. She said she is “so appreciative I am still here and able to help others, like so many have done for me. I’m beyond blessed.”

“I didn’t realize how grateful I was for everything,” she said. “I know when I first came home, I was so emotional. Being able to eat food, to go out to dinner with family and not have to carry a feeding bag with me ... it changed everything back to how it was. I am just so grateful.”