Young mother finds diagnosis and treatment at University Hospitals after years suffering from mystery illness
“Seven years of pure pain and torture” is how Sierra Prindle describes that time in her life. Although she had a happy marriage, two beautiful boys and a fulfilling job, she suffered from depression because of constant, intense pain in the back of her left leg. She would see dozens of doctors and undergo hundreds of tests before receiving a correct diagnosis for this medical mystery thanks to advanced technology and personal attention at University Hospitals Harrington Heart & Vascular Institute.
In 2015, at the age of 26, Sierra Prindle’s left calf began tingling and spasming. It was minor at first, barely there. She would feel it, then it would dissipate. But over time it worsened, especially when her leg was at rest, so she visited her family physician in 2016.
“He said he didn’t see anything concerning. He thought I probably just pulled something and it would likely go away,” she said.
But Sierra’s condition only deteriorated. Over the next several years the pain increased and spread to her foot, which would lose motion and sometimes drag when she walked. Her toes turned purple. Her calve throbbed. She never had a day without pain and often had a pain level of 10/10.
In severe pain, Sierra was averaging one to two hours of sleep per night. She took Tylenol and Ibuprofen “like candy” contributing to a diagnosis of GERD (gastroesophageal reflux disease) which caused extreme heartburn, on top of everything else.
Prior to the onset of her leg pain, Sierra considered herself a very active person, running, going to the gym, taking kickboxing and other classes three to four times a week. She enjoyed skiing with her sons. She always made sure to “get her daily steps in.”
“It was taking everything from me, my identity. I pushed myself and tried to work out for the longest time, but I was in constant pain,” she said. “I would walk on the treadmill, then all night long I would suffer severely. It hurt worse at rest, so I was up all night stretching and moving. It didn’t help, but I couldn’t lay in bed. I was in a lose-lose situation. Eventually, I had to give up exercising.”
She bounced from doctor to doctor, investigated for and sometimes diagnosed with various issues: Multiple Sclerosis, Parkinson’s, brain tumor, misalignment of the hips, nerve damage, compartment syndrome. She had blood work, x-rays, EMGs, MRIs, over and over again. But any suspicion was eventually ruled out. She was back at the beginning: no diagnosis and excruciating pain.
“Everyone keeps telling you, ‘There’s nothing else I can do,’ or ‘I can’t find anything wrong.’ It’s frustrating and depressing. It makes you feel defeated,” she said. “I loved my life. I loved my family. But I had to see a therapist. I was exhausted and depressed because of this constant pain. Everything in my life was good except for this.”
In January of 2021, Sierra was referred to Jae Cho, MD, vascular surgeon and Co-Director of the Aortic Center at UH Harrington Heart & Vascular Institute. Dr. Cho had a suspicion regarding a potential diagnosis and ordered a new test done in a very specific way.
He sent Sierra for testing at the Center for Advanced Heart and Vascular Care located at UH Cleveland Medical Center. There, she received a magnetic resonance angiography (MRA) which is similar to the more well-known MRI, but focuses specifically on blood vessels instead of organs and tissues.
Dr. Cho discussed the case with Sanjay Rajagopalan, MD, Chief of Cardiovascular Medicine and Herman K. Hellerstein, MD, Chair in Cardiovascular Research at UH Harrington Heart & Vascular Institute. Dr. Rajagopalan is known nationally for his imaging expertise and agreed to oversee Sierra’s MRA. Physicians usually read images after-the-fact, sometimes hours or days later. But Dr. Cho wanted Dr. Rajagopalan present and directing Sierra’s imaging. It was important to get it just right.
“Sierra’s previous tests and imaging weren’t done in a specific sequence,” said Dr. Cho. “To see what I suspected, I needed to start the imaging with her foot in a resting position and then repeat the study with her ankle flexed.”
Dr. Rajagopalan conducted the study using Dr. Cho’s specific protocol and was able to demonstrate popliteal entrapment syndrome, a rare condition in which an abnormally positioned or enlarged calf muscle presses on the main artery behind the knee, the popliteal artery. The artery becomes trapped, preventing blood flow to the lower leg and foot.
“It’s like somebody stepping on a garden hose. No matter how much you turn on the faucet, water’s not going to come out. A piece of muscle is pressing against the artery and keeping blood from reaching the calf and foot,” said Dr. Cho.
“The minute I got a diagnosis I cried and sent a group text to my whole family,” said Sierra. “They went through this with me. My husband has been with me through this whole thing. He saw my lowest of lows. My dad would take me to appointments. We were all in this together. It was amazing. Finally, after all these years, someone was finally going to help me.”
Less than a week later, Dr. Cho performed a popliteal artery bypass. The procedure used Sierra’s saphenous vein to move blood from above the affected area to below it, essentially skipping over the place causing pain.
Dr. Cho says popliteal entrapment syndrome is a rare condition, especially in young females. It’s a technically challenging diagnosis that was made possible only by the combination of the correct equipment, a knowledgeable and suspicious physician, and an engaged diagnostician. These three elements converged at UH’s Center for Advanced Heart and Vascular Care.
“Sierra’s case demonstrates the level of expertise and commitment we provide to our patients,” said Mehdi Shishehbor, DO, MPH, PhD, President, UH Harrington Heart & Vascular Institute and Angela and James Hambrick Master Clinician in Innovation. “Our physicians have a high level of suspicion for rare conditions. They know what type of diagnostic tests to obtain, and furthermore, provide the personal attention required for optimal outcomes.”
Three months after her surgery, Sierra has returned to activities she loves like exercising and walking with her family. She has some nerve pain as a result of surgery, but at worst she describes it as a 4/10, while some days she’s totally pain free.
Finally giving the monster a name – popliteal entrapment syndrome – brought about another diagnosis: hope.
“That’s why we are in this profession,” said Dr. Cho. “Being able to help save a life or help a patient return to the life they want to live. It gives me a tremendous level of satisfaction and reward to help people. That’s what makes me get up in the morning and go to work.”
“I’m thankful to Dr. Cho for taking my case. I’m thankful to be alive. I’m thankful to be able to enjoy every day,” said Sierra.