Symptoms and Diagnosis

Doctors have been quite non-committal about whether or not I had any brain tumor symptoms.  I think they are just covering for their profession because so many doctors failed to give me an MRI when my symptoms indicated one was needed.  What I do know is that after my second son was born in March 2016, I started having unusual symptoms that sent me to doctors and therapists for over a year until finally I landed in the emergency room while on vacation and the doctor decided to run a CT scan followed by an MRI.  Then, miraculously, after having surgery to remove the tumor, all of my symptoms went away and I felt like myself again.  I had a hole in my head, but otherwise, I felt like myself.

The first symptom was one I recognized.  In January 2013, I went to my newborn's first pediatric appointment in a brightly-lit doctor's office.  As I was filling out the paperwork, I started to see kaleidoscope shapes hovering in my line of sight.  I had to close my eyes and wait about 20 minutes for it to pass.  I learned it was a visual aura and that sometimes women can have them after giving birth.  I had three in my first son's first year of life and didn't think much of them--eventually they went away.  So when I had kaleidoscope vision at my second son's first doctor's appointment in April 2016 I didn't think much of it either.  Only I continued to have the visual auras and had to adapt my lifestyle to avoid their triggers.  Being in any brightly-lit place could trigger an aura--doctor's offices, the gym, even shopping at Michael's.  Worse was my pre-dawn commute to work that included flashing tail lights as cars descended down a hill in stop-and-go traffic.  I learned to close my eyes or wear sunglasses under fluorescent lighting.  I learned the back roads of Washington and Multnomah counties so I could drive to work without being pestered by blinking red on the freeway.  After my diagnosis, a neurologist told me that these visual auras can be caused by swelling in the brain, which happens if you have a brain tumor and your head swells after giving birth.  I don't love to look at flashing lights, but post-surgery I no longer worry about the auras. 

My second symptom was frightening.  Forty-three days after I had a c-section, our family boarded a plane to move across the country.  Near the end of our flight, my heart started beating rapidly and I felt like I couldn't breathe.  A panic attack.  I had spent my entire life flying, including flying cross-country with an infant/toddler, but all of the sudden flying made me nervous and we flew 17 times in my second son's first year of life.  We didn't just travel a lot though.  We also moved twice before he was six months old.  In the midst of all this change, I had a handful of panic attacks.  Anxiety gripped me for months.  Therapy helped tremendously, but even as I overcame many of the challenges related to all the change I had experienced, anxiety was still my little tag-along.  We lived in a peaceful coexistence for several months--I would feel anxiety pestering me and would have to calm him down so I could continue going about my day.  Then, after surgery, that tag-along was gone.  Sure, I get anxious and nervous on occasion, like anyone, but the constant companionship was gone.

The third symptom I eventually tried to ignore.  I was at book club in April 2016 and my elbow started tingling.  Then my hand was tingling.  The next morning I woke up and my whole arm was tingling.  I went to urgent care after it had been tingling for hours.  In urgent care my legs started tingling, so they sent me to the emergency room.  My blood work was fine, so the ER sent me home.  The tingling would settle on some part of my body, usually my ankles, and just stay for weeks.  Doctors dismissed the tingling saying they would need to monitor my symptoms for months before running any other tests.  So I decided to consider myself healthy and pretend like the tingling was nothing.  But, like my other symptoms, the tingling off and on until my brain surgery, and then, it too was gone. 

I believe all of these symptoms were attributable to my brain tumor in one way or another because there was such a distinct change after the tumor was removed.  But no doctor ran any kind of brain scan as I reported these symptoms.  Instead, my eye swelled shut the night of July 3rd when our family was visiting relatives in Northern Utah.  When I woke up the morning of July 4th, I couldn't see out of my left eye.

This is me really trying to keep my left eye (on the right in the picture) open!

It was a holiday and we didn't know any doctors in the area.  The day before I thought I had pink eye, but I felt a tremendous sense of urgency about getting to a doctor the morning of the Fourth, so we went to the ER at a small local hospital.  I will forever be grateful to Dr. Danny Spencer, the ER doctor that day, for deciding to run a CT scan.  He thought it was probably pink eye or something like that, and gave me antibiotic drops.  But when I told him that I felt immense pressure behind my eye every time I bent over, Dr. Spencer said I might have a blood clot and that a CT scan might show whether or not there was a clot.  The CT scan definitely showed something, and it wasn't a clot.  So the doctors ran an MRI.  There was no neurology team at Logan Hospital, so when it looked like I had a brain tumor, they sent me down to the University of Utah.  At this point everyone in Logan had forgotten that my eye was painfully swollen and, brain tumor or not, I really wasn't feeling well.  

My husband and I made last minute arrangements for our kids and drove down to Salt Lake City.  Fortunately we stopped at In 'N' Out on the way down because people in hospitals don't like to let you eat or drink anything.  At "The U" they started me on dexamethasone, a steroid to decrease the swelling in my eye, and we waited hours for the neurosurgery resident to come talk to us about my tumor.  We learned that someone had plowed their car into a homeless shelter downtown, and things were taking longer (as they do at teaching hospitals) due to the injuries.  Until the neurosurgery resident arrived, all of the other doctors and nurses were very somber.  They seemed to understand that having a brain tumor is a big deal.  We still had no idea what it meant for us and how it would change our lives.