(OWEN FREEMAN FOR THE WASHINGTON…)
The question reflected Kristrinah Ayala’s increasing desperation, and her attempt to make sense of her 18-month ordeal. “I’m a therapist,” she told the Washington rheumatologist who began treating her in the fall of 2011. “Is it possible that this problem is all in my head?”
Ayala’s anguish and the nature of her question took Victoria Shanmugam, an assistant professor at Georgetown University Medical Center, aback.
Shanmugam says she quickly reassured Ayala that the painful, five-inch-long open wound at the back of her knee was not a product of her psyche but the manifestation of a serious physical problem that a team of specialists at Georgetown were struggling to diagnose.
After 10 failed surgeries, no one knew whether Ayala’s wound, which had refused to heal for more than a year, was caused by her lupus — an underlying autoimmune disorder that can impede healing — or an infection. And if it was an infection, why had multiple tests failed to identify a bacterial culprit?
“It felt like a nightmare that I couldn’t wake up from,” Ayala, 57, recalled. “That wound was just sapping my existence.”
A resident of College Park, Ayala led an active life before her knee began giving her trouble. In addition to practicing psychotherapy, she was an amateur painter, raised cockateils, kept a flock of chickens, walked four miles a day for fitness and on weekends clocked 30-mile bicycle rides with her husband. Her diagnosis of lupus in July 2009 did little to change that. The disease, which causes inflammation and occurs when the body attacks its own tissue, seemed well controlled on medication, including corticosteroids, although her joints sometimes hurt. That was not surprising: In 2007, doctors had told her she had osteoarthritis, which also causes joint pain.
In June 2010, she developed sharp pains — sometimes so strong she was unable to stand — in the front of her left knee. Ayala consulted several doctors, who seemed unable to decide whether the pain was caused by her arthritis or lupus. An orthopedist gave her a series of cortisone injections, which eased the knee pain temporarily. An MRI scan performed in early 2011 revealed a possible cause: a torn meniscus, a common injury affecting the disk that cushions the knee.
Knee surgery in April revealed something different: Her meniscus did not require repair, but the orthopedist who performed the operation diagnosed septic arthritis, essentially an inflamed joint due to infection. Ayala took antibiotics, but the pain shifted, spreading to the back of her knee and down her calf.
A few weeks later, the orthopedic surgeon decided that the pain might be caused by a Baker’s cyst, a benign, fluid-filled growth. Such cysts, which sometimes disappear without treatment, are common in patients with arthritis or autoimmune disorders.
A month later, the pain still intense, Ayala was wheeled back into a suburban Maryland operating room for her second knee operation in less than two months. The surgeon removed the Baker’s cyst but told her he didn’t think it was the reason for her pain, which he suspected was somehow related to lupus.
That surgery, in June 2011, inaugurated a pattern: An operation to clean out the wound or place a skin graft to spur healing was followed, often within days, by the opening of the incision.
Doctors increased her lupus medication and tried to determine if an infection was the reason the surgical site had not healed. One culture did unearth a potential clue — an atypical form of bacteria often found in tap water; doctors decided it was a contaminant, not the culprit, and didn’t pursue it.
A month later, Ayala sought treatment in a Maryland emergency room for a high fever; doctors determined she had methicillin-resistant Staphylococcus aureus, or MRSA, a dangerous form of staph that is often acquired in hospitals. “Don’t come back here,” she said a doctor advised her, suggesting that she seek treatment at a hospital with greater expertise. “We don’t know what to do for you.”
In August 2011, Ayala became a patient at MedStar Georgetown University Hospital’s Center for Wound Healing. At that point, she said, she was wrung out from dealing with an intractable leg wound, two parents with advanced dementia and several doctors whom she characterized as having “the sensitivity of a rock.”
Exhausted and in pain, she said, she tearfully confided to her husband, “ ‘I can’t take it anymore. Why don’t they just cut my leg off?’ I couldn’t see clients, I couldn’t paint, I couldn’t go to Minnesota to see my granddaughter who’d just been born.”
At Georgetown, her doctors, who included a plastic surgeon, an orthopedic surgeon and an infectious-disease specialist, were baffled by her case.