Hope and Relief for Neurological Symptoms of Long COVID: The Penn Neuro COVID Clinic

George Knab, a 63-year-old union sheet metal worker from Philadelphia, was hospitalized for a week with COVID-19 in April of 2021. When he was finally discharged, family and coworkers noticed a marked change in his behavior right away.

“I was just so out of it,” he said. “There were some days my wife would take one look at me and know I wasn’t doing well, would make me rest, and not allow me to drive.”

Knab also noticed his short-term memory was impaired. “I used to be able to go to Home Depot with a list of 20 items or more and be able to remember them without writing anything down,” he said. “Now I have to work incredibly hard to remember three things.” 

These symptoms persisted for months, but even so, Knab returned to work in early July 2021, where he continued to struggle with brain fog, fatigue, anxiety, frustration, and trouble making decisions. “I knew my mind wasn’t where it needed to be, and I was terrified that I would injure myself or someone else,” he said.

“One particularly bad day in August, I called my wife from work, just about crying, worried that I was endangering myself and others,” he said. “My wife told me to pack up my tools and come home, and we would figure it out.” After months at home, Knab made the difficult decision to retire in December of 2021.

When Knab was still experiencing extreme fatigue in March of 2022, nearly a year after his COVID-19 infection, Chris Mccarrick, a nurse advocate from Sheet Metal Workers Union Local #19, helped him get an appointment with Dennis Kolson, MD, PhD, a professor of Neurology and Microbiology and part of the Neuro COVID Clinic at Penn Medicine. Kolson performed a complete neurological exam and brain imaging, and recommended a treatment plan, which he said could help improve Knab’s symptoms over time.

Kolson is one of four providers at the clinic, which launched in April of 2021. It is the only one in the region that specifically addresses the neurological symptoms of long COVID, such as impaired cognition, headache, vertigo, and brain fog. The other clinicians include Sara Manning Peskin, MD, MS, an assistant professor of Clinical Neurology, Danielle Sandsmark, MD, PhD, an assistant professor of Neurology, Anesthesiology and Critical Care, and Neurosurgery, and Matthew Schindler, MD, PhD, an assistant professor of Neurology.

After a little over 16 months in operation, the four clinicians have evaluated over 300 patients, who have been confirmed to have tested positive for COVID-19 and are at least two to three months in recovery.

“One of our main goals is to create a standardized evaluation system for every patient at our clinic,” said Kolson. “By designing a standard procedure, we not only create consistency across providers, and gives our colleagues at other institutions a guide, but it also allows us to re-evaluate patients over time and measure improvements.”

Every patient referred to the Neuro COVID Clinic schedules an extensive, 90-minute consultation, which consists of cognitive testing, neuropsychological evaluations, and physical evaluations of motor function and gait.

Some patients receive MRIs, but Kolson noted that for the vast majority of patients in the clinic, scans don’t show any brain injury as a result of COVID-19.

After this initial evaluation, clinicians will advise patients on treatment — through medication, physical therapy, and/or speech or cognitive therapy. Patients are seen for follow-ups every two to three months, when they are re-evaluated.

“The great news is that we are seeing some patients’ neurological symptoms from long COVID improving over time,” said Kolson, who himself has seen about 100 patients in the clinic since April 2021. “When we first started seeing patients, COVID-19, and long-haul COVID specifically, were so new to us, we didn’t know if patients would see improvements, or how long it would take. These results are consistent with studies published by other similar clinics that show some improvement in symptoms over time, and this prognosis often comes as a relief to patients.”

Which symptoms are most common?

According to the CDC, one in five American adults who had COVID-19 experience symptoms of long COVID. Like Knab, most patients come to the clinic with complaints of brain fog, in which patients find themselves unable to focus on tasks; memory problems; general fatigue; and headaches.

Kolson also noted that patients who had a history of headaches before contracting COVID have their headache symptoms exacerbated by infection, and people with no prior history of headaches develop them after infection.

Less common, but still seen, are patients experiencing dizziness or bouts of vertigo. Least common of all, but still seen among some patients, is neuropathy, or muscle weakness or numbness as a symptom of nerve damage.

Which treatments have been most effective?

“There is unfortunately no medication to treat brain fog or cognitive impairment,” said Kolson. “However, patients across the board have seen improvements through physical therapy and cognitive behavioral therapy, which is conducted in partnership with the department of Physical Medicine and Rehabilitation at Penn Medicine, and Good Shepherd Penn Partners.”

Kolson added that many patients, like Knab, also benefit from seeing providers who take them seriously, and give them a sense that they can proactively do something to improve their symptoms.

In addition to various physical and cognitive therapies, clinicians help patients manage and treat headaches through preventative practices, like getting enough sleep and avoiding trigger foods, and through medications, both to prevent headaches and to help manage the pain when one occurs.

“The expectation now is that patients will see some improvement over time — usually one to two years,” Kolson said. “There are a number of patients who have improved enough that they feel equipped to manage their treatment themselves, and I no longer have to see them. That’s the goal.”

Kolson also stresses the importance of getting the COVID-19 vaccine to patients. “If you’re vaccinated, you can still get COVID-19, but you will likely not end up severely ill,” he said. “What’s more, there is some emerging evidence that people who are vaccinated may have less-severe long-haul symptoms, or a more rapid recovery.”

What’s next for research on neurological symptoms of long-COVID?

Looking ahead, the clinicians at the Neuro COVID clinic want to use their growing body of data to not only help other clinics around the country treat patients with standard protocol, but to also advance research initiatives for treatments and medications for long-haul COVID-19.

“At this point, we don’t know what makes one patient more likely to suffer from neurological symptoms of long COVID, or what indicates better rates of recovery,” said Kolson. “We hope that the work we do at our clinic can help us understand this better, and help develop tailored treatments that lead to better outcomes for patients in the future.”

The Penn Neuro COVID Clinic is conducting visits both in-person and virtually. All neurological patients are currently being referred through Penn Medicine’s Physical Medicine & Rehabilitation Post-COVID Assessment and Recovery Clinic, which can be reached by calling 215-893-2668.