Medical Mystery Tour

In 2014, I started experiencing a strange and scary loss of vision in one eye after reading for prolonged periods of time.  As a patient at a membership-based primary care medical clinic, my physician promptly ordered an MRI and upon receipt of the results, immediately emailed the report to me with the comment there was “nothing emergently worrisome.” 

When I opened the MRI Report that was attached to the email, I quickly learned that this phrase simply meant that I did not need to rush to the nearest ER for the suspected skull-based brain tumor that appeared in the scan.

After the initial stunned range of thoughts raced through my head – I can’t have a brain tumor, I have an almost 2-year old who needs me to stay alive . . . the location of the suspected tumor would not impact my vision, so do I have two separate death sentences? . . .  and my favorite, I’m too busy at work for a brain tumor – I quickly pulled myself together and started researching the best neurosurgeons and neuro-ophthalmologists in the country. 

One week later I had an appointment with a world-renown neuro-ophthalmologist at UCLA Jules Stein Eye Center in LA and one month later I met with the Chief of the Neurosurgery Department at Johns Hopkins University in Baltimore and had received the preliminary good news that the transient loss of vision was unrelated to the suspected tumor (with a preliminary diagnosis of a “weird” presentation of glaucoma) and that the suspected tumor was likely a dural arteriovenuous fistula (dAVF), which can be life-threatening, but the treatment tends to have less complications and impact on activities of daily living than the treatments for skull-based tumors.

Soon after these initial appointments on opposite coasts, I had follow-up appointments with a glaucoma specialist at UCLA and underwent enhanced CT and MRI imaging at Johns Hopkins.  Within a few short months, it was determined that I was suffering from intermittent attacks of acute narrow angle glaucoma which was easily corrected and that I had an “anatomical variant” otherwise known as a large vein rather than a tumor or dAVF.  The relief over receiving an overwhelmingly positive diagnosis from medical experts was immediate.

Self-Awareness

In the nearly six years since my medical mystery tour, I have been grateful for the significant healthcare industry experience that facilitated my ability to navigate a complex health scare and, separately, for my robust insurance coverage.  As a result of the experience, I have also become a vocal advocate for access to healthcare being linked to individual choice of quality healthcare providers.  While I am proud of this advocacy, if I am being honest with myself, there has also been a bit of self-congratulatory behavior and a certain level of confidence that my own advocacy skills and determined nature secured the quick appointments with an impressive number of both East and West Coast specialists who typically have long wait lists.

However, over the past few months a new level of self-awareness about my personal medical mystery tour has presented itself as a result of an unexpected combination of events – first the COVID-19 pandemic; followed by an invitation to speak about telehealth at a TEDxReno event and then the launch of a renewed social justice movement driven by the deaths of George Floyd and other Black Americans.

The events of the past few months have led me to realize that my success in navigating a health scare is both a result of my healthcare expertise and also my privilege.

At the time of the transient loss of vision and initial MRI, I paid a monthly membership fee for concierge-style access to health and wellness providers and I continue to pay for a concierge doctor to this day.  Direct access to primary care physicians via text and email at any time of the day is a luxury that most Americans do not have.

During my health scare, I was able to obtain an appointment with the Chief of Neurosurgery at Johns Hopkins in Baltimore and a world-renowned neuro-ophthalmologist at UCLA in Los Angeles, while countless Americans must wait weeks or even months for an appointment with a specialist.  The type of national medical insurance coverage I held through my employer and the level of reimbursement was a factor in seeking treatment from the best specialists out-of-state, as was my ability to private pay if insurance denied my claims.  I was also fortunate to have the resources to travel to opposite coasts for medical advice and treatment. 

These opportunities to access high quality healthcare services reveal an overarching privilege unknown to most of the world.  While the gratitude for my circumstances and advocacy for access to high quality healthcare providers have always been present, the acknowledgement that health equity is a social justice issue has been missing from my reflection.

Social Determinants of Health

According to the US Centers for Disease Control & Prevention (CDC), “the conditions in the places where people live, learn, work and play affect a wide range of health risks and outcomes.  These conditions are known as the social determinants of health.”[1] 

While more obvious factors such as education, economic stability and an individual’s neighborhood environment determine health and life outcomes, both the CDC and the World Health Organization, the latter of which is credited with developing the framework for the social determinants of health, cite “access to healthcare services” as one of the primary determinants of an individual’s health status and a major factor that contributes to health inequities.

2020 Vision

Perhaps prophetically envisioning the intersection of the current health and social justice crises, Dr. Martin Luther King, Jr. once declared that “of all the forms of inequality, injustice in health care is the most shocking and inhumane.” 

During recent months we have learned that individuals with pre-existing health conditions are at an increased risk of serious illness from COVID-19 and that people of color, due, at least in part to pre-existing health conditions share this increased risk.  According to the CDC, “long-standing systemic health and social inequities have put some members of racial and ethnic minority groups at increased risk of getting COVID-19 or experiencing severe illness, regardless of age.”[2]  Specifically, “non-Hispanic black persons have a rate approximately 5 times that of non-Hispanic white persons and Hispanic or Latino persons have a rate approximately 4 times that of non-Hispanic white persons.”

While the risk of serious illness from COVID-19 is increased for persons of color, there have been some positive developments spurred by the pandemic that have promoted health equity.

During the beginning of the COVID-19 pandemic, Medicare (medical coverage for older and disabled Americans) and Medicaid (medical coverage for low-income Americans) along with some commercial health plans, rapidly expanded coverage for medical services provided via telehealth to limit in-person interaction and to prevent the spread of the virus.

Previously, insurance payments for telehealth visits were limited to certain specialties and situations resulting in an inequity whereby older and low-income Americans were likewise limited in their ability to utilize telehealth for a wide range of medical appointments.  Due to the pandemic, an increased number of Americans have access to high quality healthcare providers via telehealth from the convenience of their own living rooms.  Patients are now able to seek medical advice from a variety of specialists ranging from oncologists to developmental and behavioral pediatricians. 

I became interested in the innovative uses of telehealth that were inspired by the COVID-19 pandemic because the topic fit within the framework of my advocacy for increased access and choice in healthcare.  However, a few months into the pandemic, the name George Floyd captured national attention after his heartbreaking and senseless death was videotaped and broadcast to the world.  In the days and weeks that followed where the media continuously highlighted the social injustices facing Black Americans and other marginalized groups, I started thinking about my professional and personal experiences with a healthcare system that perpetuates inequality in the United States.

Now, more than ever, advocacy for healthcare delivery models, such as telehealth, that promote expanded access to high quality medical services especially among minority, senior and low-income populations, is critical to creating health equity in the United States.    The social justice movement encompasses a demand to address the social determinants of health and to ensure that all Americans have access to quality medical services that can and will positively influence health outcomes and life expectancy.

Whether you are a passionate believer that access to quality medical services and preventive healthcare reduces healthcare costs for all of us, or if you believe that access to healthcare is a fundamental human right, please join me as an ally who supports expanded telehealth options to promote local, national and global health equity.


[1] https://www.cdc.gov/socialdeterminants/index.htm

[2] https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/racial-ethnic-minorities.html

1 thought on “Telemedicine, Health Equity and that Time I was Misdiagnosed with a Brain Tumor

  1. This article is incredible- your transparency and expertise bring this problem to the forefront like I have never seen before.
    I want to be a part of this change as well! This is truly inspirational!

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