It's estimated that 10 percent of COVID-19 patients end up as “long-haulers” – those seemingly recovered from a SARS-CoV-2 infection who struggle with lingering health problems weeks or months later.
Nearly 18 months into the pandemic, providers in primary care and nearly every clinical specialty are finding themselves treating these “long haul” patients in their practices.
When Penn neurointensivist Danielle Sandsmark, MD, PhD, first began seeing these patients, she couldn't shake how familiar their symptoms looked.
"My clinical practice is focused on traumatic brain injuries, and I've always been interested in post-ICU recovery," says Dr. Sandsmark, Assistant Professor of Neurology, Anesthesiology and Critical Care, and Neurosurgery.
"Clinically, the symptoms many COVID long-haulers are presenting with — brain fog, fatigue, headache, cognitive dysfunction — look a lot like many of the patients I see in my regular practice."
Coming Together to Treat COVID Long-Haulers
Joined by three colleagues, Dr. Sandsmark is one of four specialists in the department of Neurology who came together to form their own neuro-focused long-hauler clinic.
"Sara Manning Peskin, MD, a cognitive neurology specialist, was the first one to really start assessing these patients,” Dr. Sandsmark explained. “She was getting referrals from Penn's broader Post-COVID Assessment and Recovery Clinic through our colleagues in Physical Medicine and Rehabilitation."
She continued, "Dr. Peskin and I began discussing the patients she was seeing, engaged some of our other colleagues, and realized there is quite a need in this area."
They are joined by colleagues Dennis Kolson, MD, PhD, a neuro-infectious disease specialist, and Matthew Schindler, MD, PhD, a neuroinflammation and neuroimaging expert.
While the Neurology clinical teams regularly collaborate within their division, Dr. Sandsmark noted that prior to the pandemic, that she and her three peers’ “worlds” didn't overlap quite so often.
“This has brought us together," she says. "We each bring our own unique perspective on patient symptoms and therapies.” She continued, “In novel situations like we find ourselves in now, it's very helpful to compare notes and think about things from different perspectives."
A Wide Range of Post-COVID Neurological Symptoms
Many of the complaints that long-haulers have do not fit “squarely” into one subtype of neurology. This fact is specifically what has made the subspecialist diversity of the neurology clinical team so important.
"These symptoms don't necessarily track neatly with defined neurological diagnoses, like Alzheimer's disease for example, but are more subtle or diverse problems that can be quite disabling for patients," Dr. Sandsmark says. "Right now, we know that most of their brains look pretty normal using our standard MRI techniques, but that may be more a limitation of our imaging technology."
A Path Forward
Dr. Sandsmark thinks that 10% of post-COVID patients as long-haulers is probably a conservative number. She describes the problem, its diagnosis, and its treatment as "still evolving."
According to Dr. Sandsmark, there does not seem to be a correlation between how severe a patient's COVID course was and their long-hauler symptoms. "Many of the people we're seeing actually had very mild cases of COVID and now are coming back to providers with these persistent symptoms," she says.
All patients seen by post-COVID focused neurology specialists must be referred to the team by a Penn provider and must have had a confirmed COVID diagnosis.
Neuro-Focused Post-COVID Research
To continue a path forward beyond treatment in the clinic, the four Penn neurology specialists are tracking standardized cognitive tests and outcome measures on the long-haulers to produce data, rather than making anecdotal observations.
"We're doing this in a very systematic way so that we can lend some insight into the field and provide some guidance to other providers," explains Dr. Sandsmark. She is currently also running a study reviewing biomarkers in post-ICU COVID patients.
"It's a work in progress, but you have to start somewhere."
What Other Therapies Can Help COVID Long-Haulers?
Long-hauler symptoms can range widely — from slightly bothersome headaches to brain fog so serious that patients cannot return to work.
"Being dazed, your memory is off, you can't concentrate, you just don't feel normal,” Dr. Sandsmark explains. “Sometimes I compare it to how you feel after you've been up all night with a newborn baby."
She explains that these conditions can be easily overlooked or undertreated.
"One of the most important things that we can do clinically is to be sure there are no confounders that are compounding these symptoms, like poor sleep, mood problems, or anxiety disorders."
Therapies like cognitive therapy for brain fog, and vestibular therapy for dizziness and imbalance can be helpful and, for many patients slogging through the long haul – life changing. Headaches can be managed with medications, but physical therapy can also play an important role.
“Bottom line,” she explains, “There is no magic bullet, and it often requires a team effort to make people feel better."
Danielle Sandsmark, MD, PhD, is a board certified neurologist who sees patients in Penn's Neurocritical Care Program and Traumatic Brain Injury Program.