I moved from New York City to Chicago on December 1st, 2012 to join the majority of Team Picturelife working out of Jacob DeHart’s magical Spaceship Collaborative office in the west loop of Chicago. Chicago was brand new to me. I am born and raised in New Jersey, and went to high school in Connecticut. For 6 years before moving to Chicago I lived in the beautiful west village of NYC. In the springtime(March?), I noticed that I started to have allergies mainly in the form of feeling congested – I felt exactly like one of those Claritin commercials. I tried some over the counter, but nothing helped and it was very mild so I mostly ignored it.
Over time, my symptoms developed more into headaches and migraines. I visited a doctor and did some tests, and he confirmed that it’s likely migraines. I was prescribed some NSAIDs and Sumatriptan. This seemed to work for a week, but then the migraines came back. I decided to make as many changes to my life as I was really comfortable with. My entire life I probably did not go to bed before 2AM, and wake up until 8AM. This has always worked for me. I decided to start sleeping before 11PM, and try to wake up at 7/8AM. This did not help. I would wake up continuously throughout the night, periodically in so much pain that I would have to throw up. Other changes included diet – no coffee, no alcohol, no bread, no gluten – each roughly for 3 weeks at a time. Nothing helped. Vision problems started to develop and I noticed my right eye was much more degraded than the left, this was one of the first real physical and continuous symptoms that was more identifiable.
This lead me to research what may cause this, and eventually came across Idiopathic Intracranial Hypertension (IIH) or called by other names: benign intracranial hypertension (BIH), pseudotumor cerebri (PTC). A close friend found a very good neuro ophthalmologist in the Chicago area, and I ended up seeing Russell LeBoyer, MD within a week or so. My appointment with Dr. LeBoyer was on September 10th, 2013 at 13:00. Dr. LeBoyer did a slew of tests, confirmed that I had a swollen optic nerve as well as some hemmoraging in the back of my right eye. This was good news to me, it meant there was something identifiable that something was wrong. Dr. LeBoyer began to tell me about IIH/PTC and I informed him I had discovered that just the other day. The thing about IIH/PTC is that you have all the symptoms of a brain tumor (increased pressure of the cranial fluids), but no brain tumor. In order to confirm that you don’t have a brain tumor, you get an MRI. Within 20 minutes Dr. LeBoyer had me scheduled on Thursday, September 12th for an MRI, and on Friday, September 13th for a Lumbar Puncture (see more here for IIH treatment process).
Although I was slightly nervous about the MRI, I was extremely excited to consider that I might start feeling a whole lot better very soon.
On September 12th, 2013 I drove myself to the hospital at Northshore Skokie, went and did some bloodwork and then headed over to the Radiology department for the first ever MRI that I have had in my life. As someone who absolutely loves everything about science as a way to better understand one’s self, I was genuinely excited to have my mind shown to me in such a manner. The MRI process took about an hour and although I was listening to classical music the whole time, the audio was really not loud enough to drown out the rhythmic magnets, and I found myself feeling as if I was at a concert of some band from 40 years in the future. I liked it.
Post-MRI, I was informed Dr. LeBoyer wanted to immediately discuss some next steps with me. A thought that crossed my mind was that I did so well and was so still during the MRI that they wanted to congratulate me (This is seriously something they should do - gamification of hospital procedures?). Unfortunately, the discussion was that they had found an abnormal mass in my right front temporal lobe.
Wow. I have a brain tumor. Cool. An explanation. What happens now?
Although I felt fine, I opted to take the safer and suggested route and check myself into the ER right then and there. Dr. LeBoyer had arranged for this to happen for me and had already discussed early next steps with Egon M.R. Doppenberg, MD - coolest name ever, vice chair, clinical operations, department of neurosurgery.
Hello, what brings you to the ER today? Yes, thank you, I’ve been informed I have a brain tumor, but I feel fine. They started me on some anti-seizure medicine (preventative, i have never had one) and transferred me over to Northshore Evanston Hospital via ambulance, where Dr. Doppenberg and the neurosurgery team is based.
I don’t remember too much about what happened next, or how I began to inform people about what was going on. First message was to my co-worker Jacob, “MRI was abnormal, which means brain tumor, so checking into ER.”
This has been part one of an undetermined amount of posts regarding my ongoing diagnosis and treatment, check back soon for more!