About my symptoms and diagnosis

 In 2020, the whole world adjusted to respond to the newly emerging SARS-CoV-2 virus we would soon know as COVID-19, for the disease it causes.  I began working remotely in March 2020 and by around July I started noticing short moments where I felt ‘disjointed’ but couldn’t quite explain.  I started tracking these sensations by noting when they occurred, the intensity on a scale of 1 to 10, and with a short note about what I was doing at the time and what the sensation felt like.  They were rare at first, but by November 2020 I experienced them at least weekly.  I tracked with more focus and initially felt they lined up well with symptoms of panic attack that many were talking about as we adjusted to the ‘new normal’ in a COVID world.  I focused more on meditation and breathing techniques, adding mindfulness practices and body scans to my days.

By around October or November 2021, what I was now calling “events” were happening several times every day, sometimes as frequent as 8 – 10 times daily.  I experienced minor visual disturbances almost like a shimmer somewhere in my field of view, followed by being unable to form sentences properly, and accompanied with feelings of imminent doom, inexplicable terror, and a sense that the whole world and reality itself were somehow not working properly.  I was often unsure why others around me didn't notice what felt to me like a massive chasm in our existence, which was a clue to me that this was something happening within me, rather than in my external environment.  At times, I would speak but would hear completely different words coming out of my mouth from what I wanted to say, or I would just be fully unable to speak.  I continued to consider these as just worsening panic attacks but knew I should see someone.  In December 2021, I made an appointment with my doctor to seek some help for these panic attacks, and my doctor referred me to both a Psychiatrist and a Neurologist after hearing how I described my experiences.

In the initial January 2022 appointments with both the Psychiatrist and Neurologist, it was clear that my symptoms suggested something more than panic attacks, and I began hearing the word “seizure” being used to describe my ‘events’.  My Neurologist submitted requisitions for an EEG and MRI.  My EEG in March was unremarkable and as a low priority request it was on October 13th when I had my first MRI.  I signed up for Pocket Health and saw my images later the same day.  I could clearly see an area that caught my attention in images from an Axial T2 FLAIR scan after the Gadolinium contrast agent was used, but I knew it would be best to wait for the radiologist report instead of trying to interpret this large bright spot myself.  Later, I would learn that this T2-weighted FLuid Attenuated Inversion Recovery (T2 FLAIR) MRI sequence is useful in identifying a variety of lesions, including brain tumours ⁽¹⁾ and was a good hint of what was growing in my brain.

Days later, my husband Paul and I travelled to Vancouver Island for a vacation we had booked earlier.  On October 19th, we were getting lunch in Victoria when I saw a PocketHealth notification letting me know the radiology report was available.  Paul was at the restaurant's counter while I read the radiologist's comments about a 6.5 cm x 3.8 cm x 4.2 cm T2-FLAIR hyperintense region in my right anterior temporal lobe.  The images were interpreted to suggest a Diffuse Infiltrating Glioma which the Susceptibility Weighted Imaging (SWI) sequence suggested was slightly more likely to be an Oligodendroglioma with a more favourable prognosis than a more aggressive diffuse Astrocytoma.  As I took this in, Paul returned and the look on my face told him something was up.  After telling Paul about the report, my phone rang – my Neurologist's office called to schedule an immediate appointment.  At that phone appointment, my Neurologist quickly and clearly explained what it meant to have a diffuse infiltrating glioma.  Diffuse and infiltrating meant a growth that spreads within and through healthy and functional brain tissue rather than a solid independent mass, and Glioma means it is formed from a type of brain cell classified as a glial cell.  I knew that the neurons in a brain are supported by glial cells that can be compared to scaffolding and supporting structures that help keep the brain’s billion neuron cells healthy.  The growing and infiltrating glial cells in my right temporal lobe were quickly taking up space while adding pressure and impacting normal function of the region.  My seizure experiences quickly made sense, knowing that the temporal lobe is involved in hearing, interpreting speech and in speaking, in behaviour, memory and emotions.  The amygdala sits on the medial or ‘inside’ edge of the temporal lobe, playing a key role in sensations of fear, anger, terror, and other feelings of dysphoria ⁽²⁾, further explaining the feelings I experienced during my seizures caused by impact to this region.  I was referred to a Neurosurgeon in Toronto who I would soon meet, on October 27th.

In the appointment, my Neurosurgeon explained plenty to Paul and me, clearly laying out options from monitoring the large growing mass to styles of brain surgery from biopsy to full maximally safe resection of the glioma with an aim to reduce impact to my overall function and sense of self as managed by the eloquent areas of the brain. ⁽³⁾ He clearly explained the chance that a biopsy might not fully identify the nature of the growth if there were multiple cell types involved but not all captured during the biopsy.  We discussed the potential risks of waiting and monitoring given the size the infiltrating mass had already grown to, and the frequency of my seizures, and he explained the potential outcomes of a surgery, including a 30-day surgery mortality rate of about 1.5% which is in line with figures reported in the Journal Of Neurosurgery ⁽⁴⁾.  After weighing our options, and with unmatchable confidence in our surgeon’s ability, we opted for a surgical removal.

Works Cited

1. Elster, A. D. (2021, August 1). T2-FLAIR. Retrieved 2023, from Questions and answers in MRI: https://mriquestions.com/t2-flair.html

2. Kullmann, D. M. (2011, Sep 14). What's wrong with the amygdala in temporal lobe epilepsy? Brain : a journal of neurology, 134 (Pt 10), 2800 - 2801. doi: 10.1093/brain/awr246

3. Hervey-Jumper, S. L., & Berger, M. S. (2020, Nov 16). Introduction: Surgical Management of Eloquent Area Tumors. Neurosurgery, 87 (6), 1076 - 1077. doi:10.1093/neuros/nyaa358

4. Kerezoudis, P., McCutcheon, B., Murphy, M. E., Rajjoub, K. R., Ubl, D., Habermann, E. B., . . . Van Gompel, J. J. (2017, June 23). Thirty-day postoperative morbidity and mortality after temporal lobectomy for medically refractory epilepsy. JNS - Journal of Neurosurgery, 1158 - 1164. doi:10.3171/2016.12.JNS162096