COVID-19 and Transverse Myelitis: In Her Words

Hear first-hand what it’s like to live with a rare spinal condition induced by COVID-19.

When you’re a mom of four, you’re go-go-going from sunup to sundown. In that respect, Sarah Hixson was no different, until her life ground to a halt in late 2020. A post-Thanksgiving trip bout with COVID-19 has sapped Sarah’s strength and energy and has forced her to trade school pick-ups and routine errands for physical, cognitive, and speech therapy. It wasn’t COVID itself that changed her life so drastically, but a rare spinal autoimmune condition called transverse myelitis that was triggered by the virus.

Sarah Hixson has postinfectious myelitis triggered by COVID-19Sarah and Aaron Hixson

Sarah reached out to SpineUniverse in mid-February 2021 after finding our article, Could COVID-19 Be Causing This Rare Spinal Cord Disorder? “In the article you talked about the three [currently known] people who have this [condition]. This week I became the fourth,” she wrote. “I’m so thankful for your article and felt like it was a gift when I found out there were others like me.”

This is Sarah’s story so far. It’s far from over and the outcome remains uncertain, but she hopes her story can bring comfort and a measure of help to anyone else out there with postinfectious myelitis.

A COVID-19 Rollercoaster Ride

Sarah’s ordeal started after a family Thanksgiving trip to Hawaii. She and her husband, Aaron, started feeling a bit under the weather and tested positive for COVID-19 on December 7th, 2020, in their hometown of Payson, Utah.

While Aaron had more traditional COVID symptoms—a bad cough, a sore throat, a headache—Sarah’s symptoms were more in her sinuses. “It felt like I’d breathed in chlorine or sea water, which is what I initially thought it was,” she said. ”But it didn’t go away, and then I started losing my sense of smell.” Their kids, ages 13, 11, 9, and 6, although never tested, displayed symptoms as well.

The entire Hixson family completed their quarantine, expecting to return to everyday life after the virus had run its course. Sarah’s body, however, had other plans. After a few weeks, “Everyone kind of got better, but I was still really sick,” Sarah said.

Immediately following her bout with COVID-19, Sarah started to have strange pains throughout her body, especially back pain. She also had some lasting breathing issues and was treated for both pneumonia and a kidney infection.

Her kidney and back continued to hurt, even after she finished her treatment. “We initially thought it was the kidney infection, but it never went away,” said Sarah. “My back was just always hurting, mostly a dull pain with occasional sharp pain. I’ve had kidney stones, but this wasn’t like a kidney stone, which drops you right when you get it.”

Weeks passed. Despite multiple trips to the doctor and even a CT scan, Sarah got no answers—and no relief from her back pain. All that was left to do, said her doctors, was pop some Advil and hope the pain went away on its own, like most cases of back pain do.

Neurological Damage with No Answer

No such luck. On the night of January 30, 2021, while Sarah Hixson was driving home on a familiar route—“a spot where I’d been a hundred times,” she said—she became incredibly disoriented. “I got lost twice,” she said. “I couldn’t read the big green freeway signs, all the headlights had rays, and I was a mess.”

Though Sarah made it safely home that evening, she realized something in her body (and her brain) was definitely wrong. “I was really shook up,” she said. She had to stop ignoring all the signs and symptoms her body and brain were screaming at her.

What Sarah had told no one else was that for weeks before the car incident was that she’d been experiencing massive “brain fog” and cognitive impairment. She would forget her own zip code, forget what a disagreement with her husband was about in the middle of the very discussion, have trouble remembering easy, everyday facts, and even have trouble with simple word recall.

The day after her chilling car episode (on February 1st, 2021), Sarah called her brother, a family practitioner, and told him absolutely everything that had been going on for the last few weeks. “I know I’d had these overwhelming feelings, but I just kept putting it off,” she said in regard to telling her brother.

Her brother quickly referred her to another doctor within his practice, and the yet more rounds of medical tests began. She received an MRI of her brain and neck, which revealed a large lesion on the back of her neck (in the C5 vertebrae) and a few small lesions in her brain.

Sarah Hixson's MRI shows a cervical lesion from transverse myelitisSarah's MRI shows a large lesion at the C5 vertebrae.

Hospital Hell

On February 4th, 2021, Sarah went back to the hospital for a spinal tap. Though the actual procedure was completely routine, the aftermath was anything but. About 25 minutes after the procedure, Sarah’s left hand started shaking uncontrollably, quickly followed by her left leg. Then she felt “woozy,” she said.

“Apparently I did black out,” said Sarah. “I could hear everything and feel everything, but I couldn’t open my eyes and I couldn’t move my arms or legs.”

The nurses and the doctors continued to check her vitals, and although Sarah’s body and brain were clearly not functioning properly, all her vital signs remained normal. Slowly, physical feeling in her body came back, as well as the ability to voice the weird sensations that she was feeling.

Sarah’s providers told her it was probably just a panic attack. Having a history with anxiety and panic attacks, Sarah was certain panic was not the cause. She was sent to the emergency room and then discharged.

Sarah felt completely unseen, unheard, and confused. She knew nothing that had happened to her at the hospital, or since having COVID-19, had been “normal.” She began to accept the fact she may never know what was wrong with her. She began making plans for her four children and her family if she didn’t make it the next time something happened.

No One Wants to be a Medical Marvel

Sarah had been content to let her medical care play out by the providers she’d originally seen. But when she got no answers and, even worse, felt ignored and blown off, she knew she had to become more proactive about her care. She called a friend, Jason Muir, MD, a neurologist at Hoag Hospital in Newport Beach, California.

After hearing her story, Dr. Muir agreed with her other doctors that she needed to be seen again. He told her to get to the University of Utah as soon as possible. She made the drive to Salt Lake City on Monday, February 7th. “[Dr. Muir] told me, ‘Your case is interesting enough that someone will want to help you, because this is different. When you get up there, they’ll know that there’s something weird and they’ll want to study it,’” said Sarah.

Though Sarah stayed at University of Utah for five days and was subject to a whole battery of physical and neurological exams—the latter of which showed that something was seriously wrong with her nervous system— her team of doctors all but admitted defeat after three days. While they had previously thought it could have been multiple sclerosis (MS) or neuromyelitis optica, neither diagnosis fit and they wanted to start over from square one.

At Last, a Diagnosis

Losing hope, the doctors at University of Utah performed yet more exams and more bloodwork. This time, their persistence paid off. Four days into her hospital stay, Sarah got her diagnosis: postinfectious myelitis (also known as transverse myelitis), triggered by her COVID-19 infection back in December.

Transverse myelitis is an inflammation of the spinal cord and is often caused by viral infections, immune system disorders, and other disorders that may damage or destroy myelin. Myelin is the layer of protective insulation around nerves, including those in the spinal cord and in the brain.

Myelin is made up of protein and fatty substances and serves as a sheath that allows electrical impulses (messages back and forth from the brain and body) to transmit quickly and efficiently along nerve cells. The “insulating” role for myelin is essential for normal motor function, sensory function, and cognition, and there can be severe consequences in many bodily functions when the myelin is disturbed or damaged.

Transverse myelitis has damaged Sarah's myelinMyelin, the target of immune system attacks in transverse myelitis, helps conduct electrical impulses across a nerve

The most common disorder of myelin is multiple sclerosis, but transverse myelitis is also caused by the destruction of myelin, and the effects can be numerous.

Effects of Transverse Myelitis

Transverse myelitis can affect people of any race, gender, or age; and, although there are treatments, there is no cure. Typical treatments, such as corticosteroids and other therapies that suppress the immune system, are only aimed at preventing or minimizing permanent neurological deficits.

There is already a well-known link of certain strains of COVID-19 with prolonged neurological manifestations, and there have been three previous case reports that seem to link COVID-19 with acute transverse myelitis because of a possible inflammatory complication affecting the myelin of the spinal cord. Sarah Hixson’s recent COVID-19-related transverse myelitis diagnosis puts her in this small subset of people dealing with a very specific COVID-19-induced condition.

Signs and Symptoms of Transverse Myelitis

There are four classic features of transverse myelitis:

  • Weakness of the legs and arms
  • Pain (typically starting in the lower back and often causing shooting sensations that radiate down the legs, arm, or torso)
  • Sensory alterations (in the legs, torso, and genital regions)
  • Bowel and bladder dysfunction

Many individuals also report experiencing muscle spasms, a general feeling of discomfort, headache, fever, and loss of appetite. The segment of the spinal cord where the damage occurs determines which parts of the body are affected. Sarah’s C5 lesion in the back of her neck was determined to be a result of COVID-19 induced autoimmune dysfunction, and all other neurological and pain-related issues since then have been due to her rare diagnosis.

The Journey Forward

There is no known cure for transverse myelitis, and Sarah is taking things day-to-day. Her family and friends have rallied around her to help with simple household chores like laundry and cooking dinner, as well as taking her kids to and from school. Although Sarah has been cleared to drive, she still doesn’t feel safe getting behind the wheel, not knowing what her body will do.

Aaron, for his part, said he was initially relieved when the diagnosis came through because he felt like it explained all of Sarah’s symptoms and due to the nature of transverse myelitis and the steroids the doctors gave Sarah, the condition was unlikely to get worse.

“However, since a couple of months have passed, it's hard to not let some of the frustration back in,” he says. “While Sarah is many ways has improved over the past two months, she is nowhere close to her ‘pre-COVID’ self. She still has debilitating back pain, which is the main symptom we visited the hospital for, and she still is struggling with her vision.”

She is on no long-term medications right now, except for corticosteroids. She controls the pain—somewhat—with ibuprofen; more potent medications such as nortriptyline and gabapentin have proven ineffective.

Sarah does physical therapy three times a week, and says she is getting stronger though still has troubles with vertigo. Her cognitive and speech therapy is also helping her regain control of her brain recall and cognitive function, as well as normalize her speech patterns back to where they had been pre-COVID-19.

However, Sarah was told that when the steroids she received in the hospital left her body, that was the “most” she will recover. While Sarah is better than she was, she is nowhere close to where she used to be, and is hoping their comments were not set in stone. If so, nothing will ever be the same, and Sarah’s future remains murky and unknown.

Despite the uncertainty, Sarah has a strong support system around her, including a husband with whom she can be 100% open. “Communication and patience is the best way to show love,” says Aaron. “It's really important to take the time and make sure you are both taking the time to understand each other's perspective. You both are going to be experiencing this very differently. That's okay, but be patient and understanding of their perspective.”

Sarah will continue working with her team of physicians to evaluate her therapies and recovery plan. Her case is ongoing, and her attitude is positive. When asked how she can stay so upbeat with so many unknowns in her future, Sarah Hixson says “Honestly, I don’t have a choice but to be positive. There are so many times that I would like to just curl up and hide, but my kids and husband need me, and I’m going to work as hard as I can to get to as close as I can be to the person that I once was.”

Updated on: 04/01/21
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Could COVID-19 Be Causing This Rare Spinal Cord Disorder?

Can COVID-19 cause a rare spinal condition called transverse myelitis? Learn what TM is and see the evidence connecting the two conditions.
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