The cause of a young runner's intense leg pain wasn't what it seemed

It had been a long day and Cathryn Roeck turned to a favorite method to de-stress - an after-work run. Roeck, who uses the pronouns they and them, headed into the crisp early evening darkness in October 2021 and was about a mile and a half from home when they suddenly felt intense pressure in the area behind their shins.

"I've never felt pain like this," recalled Roeck, now 27, who lives in Rochester, Minn. "It felt like my legs were going to burst."

Roeck slowed to a walk but was having trouble lifting their feet, which had gone numb. Trying to tamp down rising panic and unable to reach anyone at home by phone, Roeck called a co-worker who drove to Roeck's house and alerted Roeck's girlfriend, now wife, who raced to pick Roeck up.

At home Roeck lay on the sofa, legs elevated and encased in ice packs, weeping in pain and frustration. Why, Roeck wondered, had the arduous surgeries to alleviate leg pain performed two years earlier failed? Had Roeck unknowingly done something to cause the severe pain? But the next day when Roeck was able to walk without difficulty and had only slight muscle soreness, they wondered if they'd overreacted.

Several months later Roeck, a clinical research coordinator at the Mayo Clinic, learned the upsetting truth: The previous operations had been unnecessary because the underlying reason for their problem had been missed. In Roeck's case, that meant additional surgeries lay ahead.

"I was pi--ed," said Roeck, who regrets unquestioningly acquiescing to the first operations, which required months of recovery and left multiple surgical scars about five inches long on each leg.

"I think I was so solution-focused," Roeck said, "that I wasn't looking at the big picture and asking, 'What else could this be?'"

Possible shin splints

Roeck initially developed leg pain in high school in Wisconsin while on the cross-country team. The pain that radiated from their shins to the back of their calves was intermittent at first, but by Roeck's junior year it had become so severe that finishing the season was out of the question.

"I thought it was really bad shin splints [the result of inflammation of the muscles, tendons and tissue that covers the shin bones] or maybe a stress fracture," Roeck recalled. "I would be hobbling around after about a mile and a half." Roeck's legs swelled and assumed a bluish or purplish tinge when running and their left foot sometimes dragged. But after resting, the pain quickly subsided and the color returned to normal. Roeck tried to ignore the problem.

"We didn't go to the doctor very often," Roeck said of their family. Because the pain disappeared after about 30 minutes of rest, the problem didn't seem to merit a medical visit. "I always thought, if this is bad I'll go tomorrow. But by the next morning it was better."

For Roeck, running was more than a sport. Since age 11 it had become an integral part of a regimen, which later included medication, to combat depression and anxiety.

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When Roeck's parents were going through a divorce, running "helped me just not think about anything going on. I would put my headphones on and just tune out the world for 30 to 45 minutes."

In 2018 as a college senior, Roeck began training for a triathlon that involved a quarter-mile swim, 12-mile bike ride and 5K run.

It quickly became apparent that running was problematic. Roeck's leg pain was more frequent and severe and they were unable to push through it. Roeck consulted a physician assistant who sent them to a primary care doctor specializing in sports medicine.

The doctor told Roeck the problem was most likely one of three things: shin splints, tiny cracks in a bone caused by repetitive overuse known as a stress fracture or a less common condition called chronic exertional compartment syndrome.

The lower leg is made up of four compartments containing nerves, muscles and blood vessels that are covered by a membrane called a fascia that in some people does not expand sufficiently. Repeated exertion can decrease blood flow, preventing oxygen from reaching nerves and muscles and causing escalating pressure within muscles that over time can be damaging.

Unlike acute compartment syndrome, a medical emergency often caused by a traumatic injury, chronic compartment syndrome is frequently the result of overexercising and is reversible with rest.

After X-rays showed no sign of a stress fracture, Roeck's sports medicine doctor prescribed physical therapy. Roeck noticed that their feet tingled and felt numb every time they engaged their calf muscles, such as when balancing on one leg. After three months, the physical therapist said Roeck hadn't made progress and that the foot numbness was suggestive of chronic compartment syndrome.

Several weeks later Roeck underwent compartment pressure testing, which involves numbing muscles with anesthesia, then inserting a needle attached to a device that measures the pressure inside the compartment before and after running on a treadmill. Elevated pressures can signal chronic compartment syndrome, which can be treated by rest, cross-training that uses different muscles and other nonsurgical methods. Another option is fasciotomy, an operation that involves cutting the fascia that surrounds the nerves and muscles to relieve accumulated pressure.

Pressure testing was performed without anesthesia - Roeck said the doctor told them it wasn't necessary - which was excruciating. It showed borderline compartment syndrome; the pressures were only slightly elevated. Roeck was referred to an orthopedic surgeon who had previously operated on their shoulder following a car accident.

"He said, 'If you're having symptoms we can do surgery,'" Roeck recalled of the February 2019 appointment with the orthopedist. Without surgery, the doctor advised, running would continue to cause pain.

Roeck was determined to keep running. About two weeks later, the doctor performed surgery on all four compartments of the left leg. Three months later, the same surgery was performed on Roeck's right leg.

Recovery took months. Roeck had major swelling in their left leg and in July 2019, experienced sudden ankle tightness that caused a fall. In November, the orthopedist performed a third procedure, cleaning out scar tissue from an old soccer injury on the right ankle.

Six weeks later, after a hiatus of nearly a year, Roeck took a short, pain-free run. It appeared the problem had been solved.

The pain returns

But relief was relatively short-lived. In the summer of 2021, after Roeck had moved to Minnesota and started training for another 5K run, the calf pain returned. Roeck also began experiencing leg pain while standing at work.

"I thought it was probably shin splits," Roeck recalled.

The October 2021 incident, which occurred a few months later, was more severe than anything Roeck had experienced. Roeck consulted a new primary care doctor at Mayo, who referred Roeck to a sports medicine specialist.

At the appointment in December 2021, the specialist reviewed the prior testing and surgical records and ordered another round of compartment pressure testing (this time performed with anesthesia) along with assessments of the arteries in Roeck's lower legs and ankles.

The results seemed to point to an uncommon condition - functional popliteal artery entrapment syndrome (PAES). Because the initial compartment pressure results had been borderline, the specialist told Roeck they should not have been a candidate for fasciotomy surgery. The sports medicine doctor referred Roeck to vascular surgeon Jill Colglazier for further evaluation.

"I had a lot of mixed emotions," Roeck said. "I had an answer as to why I wasn't fixed in the first place, but it meant I had to start all over again."

Chronic compartment syndrome and PAES cause similar and sometimes overlapping symptoms that can be difficult to disentangle. But there are important differences: PAES is a vascular problem - it affects the veins and arteries - and requires a different surgery than compartment syndrome. In rare cases, people can have both compartment syndrome and PAES.

PAES occurs when the popliteal artery, which is behind the knee and supplies blood to the lower leg, is compressed by a muscle in the calf, resulting in reduced blood flow and pain during exercise. (Rest allows the overdeveloped muscle to atrophy, relieving pressure on the artery.) Repeated trauma to an artery that is compressed can cause narrowing known as stenosis. In severe cases, permanent nerve and muscle damage can occur; in very rare cases, amputation may be required.

Surgery to free the trapped artery and prevent compression is performed if pain affects everyday or athletic activities.

The condition is most common among athletes in their teens and 20s, particularly among runners and bicyclists who engage in high-intensity training to build muscle rapidly. Some people are born with an abnormal calf muscle - their cases are classified as congenital not functional - but many other cases are acquired. These can be harder to diagnose because there is no discernible anatomic abnormality.

Surgeons say they are increasingly seeing cases among teenage girls who overdevelop their calf muscles through participation in soccer and running, particularly sprinting.

Misdiagnosis is not uncommon, experts have observed. Colglazier said she routinely sees patients like Roeck who have undergone the wrong surgery - often a fasciotomy for compartment syndrome - largely because they did not have a multidisciplinary work-up.

"There's a lot going on there and a lot of reasons these patients can have lower extremity pain," Colglazier noted. "We're so specialized in medicine and surgery now that it's important to get us together to talk about patients." For years Mayo has required patients with lower leg pain to undergo an evaluation involving sports medicine, orthopedics and vascular surgery.

Colglazier met with Roeck in February 2022. They discussed Roeck's fervent desire to continue running and willingness to undergo additional operations.

"For some people, this is what they love," Colglazier said. She noted that Roeck was also experiencing pain while standing at work.

"I wanted to be absolutely certain that this was her problem," said Colglazier, who ordered an angiogram. When the surgeon placed her hand on the ball of each foot and asked Roeck to press as hard as possible, she could see blockages on both sides, which confirmed the PAES diagnosis.

In April 2022 Roeck underwent surgery on the right leg, followed a month later by an operation on the left. During the procedure, performed under general anesthesia, the surgeon makes an incision on the inner calf or the back of the knee to alleviate the abnormal pressure and give the artery more space.

Recovery was tougher than Roeck expected and required eight months of physical therapy. Roeck has resumed running about two miles at a time, which they alternate with walking and biking.

"I wish I hadn't ignored the pain for so long and pushed through it until I got to a breaking point," Roeck said. Experience has taught them to ask questions and evaluate medical information with a more critical eye.

"This has been a real journey," Roeck said. "I'm glad I'm on the other side of it."

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