Excruciating leg pain: The medical mystery

“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 was able to walk slowly but had trouble getting up from the ground. 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.

Roeck lay down on the couch, his legs raised and covered in ice, weeping in frustration and pain. Roeck wondered: Why had Roeck failed to heal the leg pain from two years ago? Roeck had unknowingly caused 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.

Roeck, a Mayo Clinic clinical research coordinator, discovered the shocking truth several months later: Previous operations were unnecessary because the root cause of the problem was not found. In Roeck’s case, that meant additional surgeries lay ahead.

“I was pissed,” 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?’”

Roeck developed leg pain during cross-country in Wisconsin in high school. 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. The pain subsided quickly and the color returned back to normal after some rest. Roeck tried not to notice 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.”

Roeck saw running as more than just a sport. It had been a part and parcel of a routine since Roeck was 11 years old, which eventually included medication to fight anxiety and depression.

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.”

Roeck, a senior at college, began training for a triathlon in 2018. It involved a quarter mile swim, a 12-mile bike ride, and a 5K run.

It was soon apparent that running was not a good idea. Roeck’s leg pain was more frequent and severe and they were unable to push through it. Roeck saw a physician assistant and was referred to a sports medicine specialist.

Roeck was told by the doctor that it was likely Roeck had shin splints. These are tiny cracks in bones caused repetitive overuse, also known as stress fractures. Roeck also has chronic exertional compartment syndrome.

The lower leg is composed of four compartments that contain nerves, blood vessels and muscles. Some people’s fascia membranes don’t expand enough to cover the entire area. Exercising repeatedly can result in a decrease of blood flow. This prevents oxygen from reaching muscles and nerves, and can cause escalating pressure that can become damaging.

Acute compartment syndrome is a medical emergency caused by trauma. Chronic compartment syndrome can be reversed with rest and exercise.

After X-rays showed no sign of a stress fracture, Roeck’s sports medicine doctor prescribed physical therapy. Roeck noticed their feet felt numb and tingling when they engaged their calves muscles. This was especially noticeable when Roeck was balancing on one foot. After three months, the physical therapist said Roeck hadn’t made progress and that the foot numbness was suggestive of chronic compartment syndrome.

Roeck went under compartment pressure testing a few weeks later. This involves anesthesia to anesthetize the muscles and then inserting a needle into a device that measures pressure inside the compartment. The treadmill is used to measure the pressure. High pressures can indicate chronic compartment syndrome. These can be treated using rest, cross training, or other non-surgical methods. Fabiotomy can also be performed to relieve pressure. It involves cutting fascia, which surrounds nerves and muscles.

Pressure testing was performed without anesthesia — Roeck said the doctor told them it wasn’t necessary — which was excruciating. It revealed borderline compartment syndrome. The pressures were slightly elevated. Roeck was referred for an orthopedic surgeon, who had previously performed on Roeck’s shoulder following a car crash.

“He said, ‘If you’re having symptoms we can do surgery,’” Roeck recalled of the February 2019 appointment with the orthopedist. Running would still cause pain, even if the doctor recommended surgery.

Roeck was determined not to stop running. The doctor operated on the four leg compartments in the left leg about two weeks later. Three months later, the same surgery was performed on Roeck’s right leg.

The recovery process took several months. Roeck suffered from severe swelling of their left leg. In July 2019, Roeck experienced ankle tightness which caused him to fall. In November, an orthopedist performed a third procedure to remove scar tissue left from an old soccer accident on the right leg.

Six weeks later Roeck, after an almost a year-long hiatus, took a brief, painless run. The problem was solved.

The relief was short-lived. The calf pain returned in the summer of 2021 after Roeck had relocated to Minnesota and began training for a 5K run. Roeck began to feel leg pain when standing at work.

“I thought it was probably shin splits,” Roeck recalled.

Roeck experienced more pain in October 2021 than any other incident. Roeck saw a Mayo primary care doctor who referred Roeck for sports medicine.

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). Roeck was told by the specialist that because the initial compartment pressure results were borderline, they shouldn’t have been considered for fasciotomy. Roeck was referred to Jill Colglazier by the sports medicine physician 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 can cause similar symptoms, which can sometimes overlap and make it difficult to identify the difference. But there are important differences: PAES is a vascular problem — it affects the veins and arteries — and requires a different surgery than compartment syndrome. Rarely, individuals can have both compartment syndrome AND PAES.

PAES happens when the popliteal, which is located behind the knee, supplies blood to the lower legs. It causes reduced blood flow and pain while exercising. Rest allows the muscle to relax and relieve pressure on the artery. A narrowing of an artery due to repeated trauma can be caused by stenosis. In extreme cases, nerve and muscle damage may result in permanent disability. Amputation may be necessary in rare cases.

If you are experiencing pain that affects your everyday life or your athletic performance, surgery is done to release the blocked artery and prevent it from getting compressed.

It is most common in athletes between the ages of 20 and 30. This is especially true for runners and cyclists who do high-intensity training to rapidly build muscle. Some people are born with an abnormal calf muscle — their cases are classified as congenital not functional — but many other cases are acquired. These cases can be more difficult to diagnose as there is no obvious anatomic abnormality.

According to surgeons, they are seeing more cases of teenage girls with calf muscle overdevelopment from running and soccer, especially sprinting.

Experts have confirmed that misdiagnosis is common. 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.

Roeck met Colglazier 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. Roeck also felt pain standing at work, she said.

“I wanted to be absolutely certain that this was her problem,” said Colglazier, who ordered an angiogram. Roeck was asked to press as hard as she could on each side of the blockage. The surgeon then placed her hand on each foot’s ball and confirmed that the PAES diagnosis.

Roeck had his right leg operated on in April 2022. The left was followed by a one-month later. Under general anesthesia, the surgeon makes incisions on the inner leg or back of the knee to relieve abnormal pressure and increase the space for the artery.

Roeck needed eight months of physical therapy after a more difficult recovery. Roeck is now running two miles per hour, which Roeck alternates with biking and walking.

“I wish I hadn’t ignored the pain for so long and pushed through it until I got to a breaking point,” Roeck said. Their experience has taught them to ask more questions and look at medical information with a greater 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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