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Last fall, Sophie Beyer was only well enough to attend school one day per week. Now, not only can she make it to school, but she’s also attending evening rehearsals for a community play four days a week. (She’s Brigitta in “The Sound of Music.”)
The big difference between then and now: Sophie found the Renal Autotransplant Program (RAP) at University Hospital in Madison, Wisconsin, where she underwent a procedure that finally gave her some relief from her pain.
Sophie, 14, first began experiencing health problems in December 2020. Within a matter of weeks, she lost weight, suffered through leg pain and numbness and learned she had a cyst on her spinal cord. Physical and occupational therapy relieved some of that pain, but later she developed significant left-sided abdominal and flank pain. When her doctor ordered a follow-up magnetic resonance imaging (MRI) scan, the radiologist found a serious problem: she had nutcracker syndrome.
Nutcracker syndrome is a rare vein compression disorder in which an artery in the abdomen squeezes the left renal vein and impairs the blood flow draining the kidney. This can cause many chronic problems, the worst being chronic left-side abdominal and flank pain. Sophie had experienced abdominal pain throughout her childhood, but her parents never dreamed that she had such a serious condition.
The Beyers live in Prescott, Wisconsin, which is right across the border from Minnesota and near the Twin Cities. They knew Sophie needed a vascular surgeon, but they couldn’t find anyone in the area who was willing to see a pediatric patient with nutcracker syndrome. Then, in a Facebook group for people with nutcracker syndrome, they heard about David Foley, MD, transplant surgeon at UW Health and director of the renal autotransplant program.
Sophie traveled to Madison to see Dr. Foley in August 2021. There, he ordered additional x-ray studies that confirmed the diagnosis of nutcracker syndrome, the likely cause of her unrelenting pain. The good news: Dr. Foley could fix it by performing a renal autotransplant. In November 2021, he completed the surgery during which he removed her left kidney and all the swollen veins around the kidney and placed the kidney on the right side of her abdomen.
“This condition affects both children and adults. When we have a pediatric patient with nutcracker syndrome, the blood vessels are smaller, but it’s still the same standard operation,” says Dr. Foley. “We have had good success in helping pediatric patients, as well as adults, with this condition.”
And if the Beyers have anything to do with it, more families will hear about UW Health’s success with renal autotransplant. They’ve already recommended the program to several other families they’ve met online. “We loved the doctors at UW Health, and we were so impressed with the care,” says Kelsey.
Sophie, meanwhile, still battles a few other health issues. But her flank pain has resolved, and she’s happy to be living a fuller life. “I don’t have any stomach pain anymore, and the headaches have gotten a lot better,” she says. “I’m doing a lot better than I was before.”