Problems associated with uveitis are relatively under-appreciated by the general population and ophthalmologists alike. Few people realize, for example, that the third leading cause of blindness in this country is uveitis.uveitis.org
I was diagnosed with uveitis in June 2017, when I developed a blind spot in my right eye. (It was kind of like when you look at a light bulb for too long, but it lasted for hours.) I consulted Google, diagnosed myself with a detached retina, and made an appointment with my regular eye doctor, Dr. Lampariello. He dilated both my eyes and took a good long look with his fancy eyeball machines. Then he pushed the machines to the side, sat back in his stool, and made very intense and serious eye contact with me.
“You have severe inflammation in both of your eyes… but what is more concerning to me is that both of your optic discs, in the back of your eye, appear to be swollen. This can happen when there is a mass in your skull…”
I honestly didn’t hear much after that. I was sent to some specialists, who were waiting in the office after-hours to meet me and to do some tests. I had to have an IV put in, with contrast put into my arm and simultaneous imaging done of my eyes. After a few hours, the specialists kind of shrugged their shoulders and sent me to the Massachusetts Eye and Ear (MEEI) emergency room. I was losing my vision, maybe had a mass in my skull, and the doctors I’d seen didn’t really seem to know what to do.
I got to the MEEI ER around 7:00pm, and I was seen pretty quickly (which was nice considering that I’d been at doctors’ offices all day). A few different doctors and fellows came to talk to me. They inspected the backs of my eyes, confirmed the optic nerve and optic disc swelling, and asked me one million questions. Have you been out of the country recently? (No.) Do you own cats? (No.) Have you been bitten by a tick? (No.) Do you have a cough? (Not really.) Any chance you’re pregnant? (No.) Do you use intravenous drugs? (No.) Any chance you have syphilis? (No.) Are you sure you don’t have syphilis? (Yup, I’m pretty sure.) Can we test you for syphilis? (Sure. Why not.)
They checked to see if I was color blind. They measured the extent of my vision loss. They put more contrast in my arm through an IV to get good images of the blood vessels in my eye. They did imaging of my optic discs and optic nerves, which basically required me to stick my face directly into a machine while bright lights flashed and the technicians said “Open your eyes wider, Miss Casey.”
Somewhere around midnight, they told me that I needed an MRI. I don’t know if it was the fear or the exhaustion that got to me, but I burst into tears. I had never had an MRI before, and on a good day, I am a very anxious and claustrophobic person. On a day where I was potentially going blind with a mass in my skull, I was a wreck. I will never forget the kindness of the nurses, who very sweetly gave me a very large dose of Ativan. Even though the medication was numbing most of my sharp nerves, I was still trembling and crying as I took off my jewelry: my gold cross that I have worn everyday of my life for almost twenty years and the engagement ring that I had just gotten two weeks prior. I held the jewelry in my hand for a minute before handing it to my fiancé. The cross and the ring felt so symbolic and heavy in that moment. Enormous elements of my life were in jeopardy. I was petrified of having this test, and even more petrified of the results, and I couldn’t even clutch onto my faith or love or family for comfort.
I laid down on the bed of the MRI machine. The technician fiddled with my IV as my arm shook from nervousness. I was asked repeatedly if I had any piercings or metal in my body, and for some reason, I kept thinking that maybe I had some unknown metal somewhere in me that I wasn’t aware of. I kept imaging this unknown metal being yanked through my flesh as I laid in the tiny MRI tunnel. I was given a hairnet, then earplugs, and then an enormous headset was put over my ears. My head was cradled in a brace, and then a mask came down over my face so that my head strapped down, motionless. I was given a little hand-held button to press in case of emergency. “Isn’t this entire situation an emergency?” I thought to myself as they pushed me headfirst into the tube.
The loud noises started banging and clanking around my head, and I thought about the possibility of having a brain tumor. Despite the Ativan I had taken, I was in a state of sheer panic. About ten minutes passed, and the loud noises continued. Then, a pause. Over the microphone, the technician asked if I was OK.
“Not really,” I said. “Can I please come out?”
“If we take you out, Miss Casey, then we have to start all over.”
“I’m just really scared,” I whispered. Tears flowed out of my eyes, down my temples, and into my ears. I couldn’t wipe them away.
“What can we do to help?” the technician asked.
“Can you give me a countdown? After each test? So I know how much longer I have in here?”
For the remainder of the test, I got periodic updates letting me know that each session of clanking, whirring, and tumbling would be 5 minutes, or 4 minutes, or 8 minutes. In total, I was in the MRI machine for about 45-60 minutes. I can’t really describe the feeling of relief I had when I got out of that machine, and went back to sit with my fiancé in the triage area of the emergency room. We had about another hour of waiting for the results, during which we shared a stale hospital sandwich and a bag of Doritos.
Around 1:30am, as we sat in a little corner of the MEEI ER, we overhead the doctor who had been treating me answer his phone. With a feeling that he was discussing my MRI results, we fell silent, eavesdropping on his end of the conversation.
“OK, so her scans are all clear?” he said. My fiancé and I audibly exhaled… yet a tightness remained in my chest.
A few minutes later, the doctor came to talk to us. He told me that my MRI was clear; there was no mass in my skull and no lesions on my brain. They had been checking for lesions that would indicate a Multiple Sclerosis (MS) diagnosis, a disease that commonly presents with vision loss. I silently thanked God for this reassuring news, but I also felt as vulnerable as ever because I was still losing my vision without any explanation.
The doctor asked if we could be back at MEEI for a 7:30am meeting with neuro-ophthalmology. Again, I thanked God for the blessing of living in downtown Boston. We went home for a fitful four hours of sleep, then were back at the hospital for blood tests, eye exams, bright lights, IVs, and X-rays. One test required the use of a contrast dye that made my urine look like highlighter ink. (Warning: Weird TMI picture below.)
After all these tests, the neuro-opthalmologist reviewed my file, looked at my eyes, and noted that I was an “interesting case.” He scheduled me for a lumbar puncture procedure at Mass General Hospital for a couple days later, and referred me to yet ANOTHER doctor who specialized in uveitis.
The lumbar puncture (also known as a spinal tap) was an interesting experience. I had to lay on my side with my knees tucked up against my chest while two doctors numbed my lower back and put a needle in between my lower vertebrae. They measured the pressure of my spinal cord fluid as it spurted out of my body, and then they collected a sample of the fluid for testing. When the procedure was complete, I found it kind of funny that I just stood up and walked out of MGH (with my fiancé’s assistance of course).
I thought the procedure itself would hurt more than it did. In hindsight, the anguish I felt related more to the concept of my spine being punctured. The pain set in as we waited for an Uber outside of the hospital; the numbing medication was fading and my angry muscles reacted to having been thoroughly stabbed. I had a hard time walking and bending for one or two days, during which I found out that the results of the lumbar puncture were normal. There was no neurological explanation for my vision loss…
… which was worsening by the day. The small blind spot that I’d developed over a week prior had gotten larger. It was a big, empty blob in my right eye’s field of vision. It was not blurry, it was not dark, it was not light. It was just nothing. It was blindness. I assimilated my vision to what someone might see if they had a piece of Swiss cheese over their face — only pockets of vision through holes. What I could see was blurry, and colors were dimmer, less vibrant. It was disorienting, as my vision was unbalanced. At that point, the inflammation was much worse in my right eye than my left eye; however, the doctors had noted that both of my eyes had inflammation. I woke up every morning, wondering if a blind spot would develop in my left eye, too. I had no answers, no explanation, no idea what was happening and if it would get worse and claim ALL my vision.
Thankfully, just a couple of days later, I was able to get an appointment with Dr. Lucia Sobrin, a uveitis specialist at MEEI. She is a petite woman with dark, serious eyes. When I first met her, she scared me. She was stern and asked me dozens of questions in rapid-fire succession. She never smiled. I knew my situation was serious, but the severity with which she studied my eyes, my test results, and my case alarmed me. As I think back now, I’m grateful for her concentration. I credit her with saving my vision.
(To be continued…)