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By Alyce Collins and Tori Jean Dent
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Many people look back at March 2020 as the dawn of a new era, and, for me personally, it’s a time when my life was profoundly changed.
At the beginning of the COVID outbreak, I was on a cruise traveling to Lifou Island, New Caledonia, and Port Vila in Vanuatu. I was only 25 at the time, and it was supposed to be the trip of a lifetime.
Before we returned to the port of Brisbane, I wanted to make the most of the last morning. I went up to the top deck at around 6 a.m. to take it all in, but I was overcome by dizziness. I couldn’t seem to get rid of the feeling, but I just presumed it was my sea legs.
Read More on My Turn
I returned home as planned and, before long, it was time to return to work as a registered nurse. I still could not shake the dizziness, however, even once back on dry land.
Within weeks, I started to have trouble drinking, eating, and I developed a cough. I grew concerned when I was unable to drink for two days without throwing up. It was also around that time when it became difficult to walk as I had limited balance and I was so dizzy.
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A lot of people I worked with were concerned that I had COVID, especially with the progression of my symptoms and the uncertainty around COVID at the time. My boss told me to get a COVID test, so I did it, and then I was then taken straight to emergency department where I had blood tests and a CT scan.
All those results came back normal, but my symptoms remained.
‘I Felt a Wave of Disbelief’
As I went to the hospital on a Friday and spent the day getting fluids, blood work and a CT scan, I was put in a COVID ward until my results were back on the Monday. The COVID results were negative, so then I went to a normal ward of the hospital. At this point, I had to see a speech pathologist who modified my diet as I couldn’t eat. I then went for an hourlong MRI, and while I waited for the results, I saw an ENT doctor who put a scope up my nose.
That was when I was told it was neurological, but doctors needed the MRI results to see exactly what was causing my symptoms. I got back to the ward, and my team of doctors told me that I had a very small tumor on my brainstem that was likely a hemangioblastoma, benign, slow-growing tumor.
The tumor was deemed inoperable, so doctors planned to treat my symptoms over the next six weeks.
When I was told the results, I felt a wave of disbelief. I used to think I was naive about how it would affect me, but I was just hopeful that it wouldn’t change my life. I felt like it wasn’t actually that bad and maybe I was being a hypochondriac. I didn’t think it was as serious as it would be.
Within the first week, my symptoms continued to progress. I could no longer walk, had double vision and lost sensation in my body. I had to be transferred to another hospital where I received a second MRI upon arrival. In the space of one week, the tumor had grown a third, and doctors ruled out the possibility of it being a slow-growing tumor.
Surgery to remove the tumor was scheduled for two days later, on April 9, 2020.
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‘Recovery Was Harder Than I Ever Thought’
I was happy when I was initially told about the surgery as I felt optimistic that removing it would help me feel better. An MRI was done the day after the craniotomy on April 10 and it only showed that the majority of the tumor was removed, leaving only a residual mass.
For about a week afterwards, I felt like I was recovering and getting better. I started walking with supervision and used a walking aid four days after the surgery.
But it did not last because then I got dizzy again and felt like my legs would give way. By April 29, my condition had deteriorated so much that I was moved to the ICU. I was given a tracheostomy and had a feeding tube placed in my stomach. I went for another MRI scan on April 30, and, within weeks, the tumor had grown back to its original size.
The tumor was back, and the surgery was for nothing.
For seven months, I was on a hospital ward, and then the next seven months were spent as an inpatient in a brain injury rehabilitation unit. In the weeks and months after the craniotomy, I was monitored with regular MRI scans to track the tumor.
By May 8, 2020, it was 16 by 13 by 40 millimeters [0.63 by 0.51 by 1.57 inches] in size, and one week later, it started to shrink. Another scan on June 26 showed that it had gone down significantly, as it measured 5 by 3 millimeters [0.2 by 0.12 inches] by that point.
'Diagnosed With an Undifferentiated Brainstem Lesion'
The recovery was harder than I ever thought it would be. I find it difficult to put into words. I used to have such a carefree life, I was into health and fitness and I loved my job. I had a very full life, but within weeks, I was confined to a hospital bed and no longer recognized what my life had become.
In May 2021, over a year after the dizziness started, I was discharged from hospital with the diagnosis of an undifferentiated brainstem lesion, which is an area of damaged brain tissue. They can cause an array of symptoms, and while they can occur due to brain injuries, the cause of mine is ultimately unknown.
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I am now 31 and consider myself physically disabled as my mobility, balance and coordination are all heavily impacted. I have left facial nerve palsy which affects my appearance, but I’ve tried not to let that impact me too much. I also have a left vocal cord palsy which affects my voice significantly, although I’ve had a couple of surgeries to inject filler to help with this.
When I’m moving, I use a walking aid because I cannot safely walk without it. That being said, I’m quite strong now and I can work out in the gym. I find that if I’m seated or balanced is when I’m at my strongest.
My message to other people is to set your own goals to keep going. If someone else says they are unrealistic, be willing to move the goalposts and reassess, but don’t give up.
Tori Jean Dent, 31, from Brisbane, Australia, is rebuilding her life after being hospitalized for more than a year with a brain injury. She documents her recovery on social media (@torijeandent on TikTok and @tori.jean.dent on Instagram) to raise awareness for undifferentiated brainstem lesions.
Contact Newsweek editors on this story: Charlotte Nisbet and James Debens
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