Canadian Woman Seeks Rare Surgery in U.S. for Digestive Condition

A 28-year-old woman from Manitoba, Canada, is planning to travel to the United States for a rare surgical procedure after struggling with severe gastrointestinal issues. Nicole Friesen has faced debilitating symptoms that have made eating nearly impossible, leading to significant weight loss and a reliance on a feeding tube for nutrition.

Friesen’s health challenges began in childhood, marked by gastrointestinal distress that worsened over time. Despite attempts to identify potential triggers, including eliminating gluten and lactose from her diet, her condition deteriorated. “I started getting violently ill after eating meals,” Friesen explained. “It got to a point where I couldn’t eat more than three bites of food, and I would feel very full and nauseous.” She described the pain as so intense that it often left her curled up in bed with a heating pad.

After several consultations with vascular surgeons and inconclusive tests, Friesen was diagnosed with Superior Mesenteric Artery Syndrome (SMAS), a rare condition where the duodenum is compressed by the superior mesenteric artery and aorta, complicating food passage. For over a year, she survived on minimal caloric intake, relying on just a few spoonfuls of peanut butter and frosting. “When I finally got my feeding tube, it was a huge relief,” she stated.

Despite regaining some weight, Friesen still faced the challenge of understanding her condition. This prompted her to seek further medical advice outside Canada. In June 2023, she and her husband traveled to Spain to consult with a specialist in vascular compression syndromes. Following additional tests, she received diagnoses of Median Arcuate Ligament Syndrome (MALS), Nutcracker Syndrome (NCS), and May Thurner Syndrome (MTS).

The revelation of these multiple conditions offered Friesen some clarity, but it also highlighted the urgent need for treatment. She is scheduled for an Alvear method surgery in Virginia, a procedure not offered in Canada, aimed at alleviating the compression affecting her small intestine. “It has been such a huge hope to people living with SMAS to be able to regain the ability to eat,” she noted, expressing her wish for Canadian surgeons to adopt this method.

Dr. Charles Bernstein, a distinguished professor of internal medicine at the Max Rady College of Medicine, commented on the rarity of Friesen’s case. “To have two or more of these conditions would be extremely rare, and to have all four would be very, very rare,” he said. His experience with patients suffering from MALS and SMAS has shown that cases like Friesen’s often require specialized care. “I would encourage patients who are like this to get care from the most expert centres they can find,” he added.

Friesen is preparing for a significant financial burden, with the overall costs of the trip to Virginia estimated at around $60,000, encompassing surgery, travel, and accommodation expenses. Despite these challenges, she remains hopeful. “We’re very hopeful this surgery will allow me to regain the ability to eat,” she stated, expressing determination as she looks forward to this crucial step in her journey to recovery.