Since October, running has been a challenge for me and it has nothing to do with my fitness levels or (for once) my shins. Instead, it has to do with my right eye. Warning: this is a very long post and not at all about running.
Last spring, my right eye began watering nonstop. I went to the eye doctor and was told I had a completely blocked tear duct. They shoved a needle down it to open it up, and prescribed steroid eye drops to help keep it open. It got better, and I forgot about it.
Fast-forward to this past fall and the watering was back. I tried the eye drops again, but nothing helped. By this point, I was at my new job and terrified of asking for time off to see the doctor, so I dealt with it. But when I say my eye waters, it literally drips 24/7. If I don’t wipe it every few minutes, it drips down my cheek. Before it drips, it pools in my eye so it looks like I’m about to cry. I’m always dabbing at it with a tissue, which wears off my mascara and also make my skin red and irritated. It’s also embarrassing, especially in front of colleagues and clients. As far as running, it means I have to carry about 10 tissues with me on a 30-minute run. When it’s really cold, I just keep them in my jacket pocket. But on warmer runs, it means keeping them in a running belt that I otherwise don’t need. I sweat too much to keep them in my waistband or bra strap. It’s a hassle more than anything.
Sometime after the first of the year, I noticed a change in my actual eye. I had just finished a class at the gym on a Saturday morning, and I went into the locker room to change. My hair was pulled back and I wasn’t wearing any makeup, and it was so blatantly obvious how much bigger/more protruded my right eye was. When I saw it, my heart sank. The changes I suspected in that eye were no longer a fluke – my thyroid eye disease/Graves’ ophthalmopathy was back…despite the fact it had been dormant for 5 years, and I’d had two massive surgeries to correct the damage it left in its wake.
I honestly wondered if cutting out all the tissue and muscles and getting a glass eye might be better. I could not go through more surgeries, and I 100% refuse to take those huge doses of prednisone ever again. Radiation was beginning to look appealing.
I had put off going to the doctor for the first time in my life, and finally understood why so many people (mostly men, including my father until his heart attack) avoid going – they have some idea of what the doctor is going to say, but don’t want to hear it. Because then it becomes real. Denial. But when my eye turned bloodshot two weeks ago and over-the-counter redness relief drops weren’t making a damn difference, I scheduled an emergency appointment.
The neuro-ophthalmologist is about the nicest man I’ve ever met. He asked me some questions, took measurements, tested my vision, reviewed my chart. He wasn’t saying much. Until he did. He asked what I knew about how Graves’ can affect our eyes. I knew it then. It was officially back. He let me explain it my way, then he explained it his. He said he wanted to get a CT scan to figure out exactly how how much my muscles were swelling and whether my optic nerve was compromised. I cried. No, I sobbed. I shook and told him over and over again in a Nancy Kerrigan “why me?!” voice that I thought this was behind me, that it was so bad for so long and I had these major surgeries. He explained that this disease doesn’t follow a course, it can come and go, etc. He thought as long as the CT came back OK, we’d just be able to watch it, wait for it to die down, and do a minor surgery to bring my eyelids back to symmetry. He gave me steroid drops for the redness and said unfortunately I’d have to live with the watering for now (the watering is because my eye is pushed forward, so it is more exposed to air, and also doesn’t close 100% when I sleep).
My worst nightmare had come true – the most traumatic period of my adult life was actually not over like I thought it had been for 5 years, it was back. I thought about quitting my job, or at least working from home permanently. I texted my dad because I was too distraught to call. I was walking to the train and just stopped, buried my face in my hands, and straight-up sobbed in public.
When I got back to the office, I got through some meetings and asked my manager if she had a moment. I shut the door. She probably thought I was quitting. I explained that I didn’t want her to think I was making a big deal of a bloodshot, watery eye, but that this was a serious medical condition and also a very emotional re-diagnosis for me. She said her mom had Graves’ and the associated eye issues. Like cancer, it seems like everyone knows someone who has or had it. Except me! I never knew what it was until I was diagnosed. Anyway, she was so great. She even offered to take me to appointments or bring my work or let me work from home or buy me adaptive software. I opted to just work in a dark office for the rest of the day (my eyes remained dilated until late that night).
That was on a Thursday. On Monday, I worked from home so that I could get the CT scan done at the office near my apartment (I had seen the doctor way down in Quincy – not close to work OR home). It took 10 minutes, and I was back at my dining room table working 30 minutes after I left the apartment.
Four days later, my doctor called me when I was in a meeting and left a message. He didn’t say why, but obviously he was calling with the CT results. I had to wait an hour for the office to re-open after lunch, and I locked myself in a conference room at work and called him back, shaking as a dialed.
Well lo and behold, the first thing he said was that there were no issues with my eye muscles or optic nerve, that this was NOT Graves-related. I repeat, this is NOT Graves-related. Holy &*^#! But then what? Well, he talked about sinuses and masses and orbit and ENT but told me it was not cancer. He wanted an MRI. He said this was good news considering what we had both expected. I agreed and thanked him and hung up.
Unfortunately I didn’t write anything down, and I started googling the wrong things. So the next day, I called him back for a better explanation (still waiting for my insurance company to authorize an MRI so soon after a CT). He said that I had a mucocele (I tried googling “mucoseal” – wouldn’t you have?), a complication of past sinus infections. He explained it as a mass that had formed, originally in my ethmoid sinus but that has since spread to my orbit, thus pushing my eyeball out of the socket, creating symptoms almost identical to thyroid eye disease (except all the symptoms felt different to me. My eye looked the same as they both had in 2011, but with completely different symptoms). He said the MRI would show the extent of the mass, but re-confirmed it was not a tumor. He would review the MRI but also loop in an ENT doctor. He didn’t talk about treatment, but it’s pretty easy to figure out that I need surgery – it’s just a matter of which approach they will take. Do yourself a favor and do not Google “ethmoid sinus mucocele surgery.” There are many bloody, gory photos of very severe cases that look nothing like me.
In fact, people swear they can’t tell. They say, “Oh I guess I see it now,” when I make them stare at me without squinting my right eye, which has become habit when talking face-to-face and when posing for pictures.
The big question is why this has happened. I really never had sinus problems before my big eye surgery (bilateral orbital decompression via removal of the medial wall, orbital floor, and fat behind my eyes), but the ENT did say my septum was significantly deviated to the right, and I have literally had a sinus infection every 8-12 weeks since then. I use flonase daily. I sleep with a humidifier, and use a Netipot and sudafed when I do get an infection.
I got the MRI last Monday night. It took 45 minutes of laying still inside a long tube, feeling very claustrophobic. It was uneventful, and I rewarded myself with fries and a shake from Wahlburger’s before driving home. On the way home I was T-boned by a Lyft driver who blew a red light and made an illegal left turn right into my passenger side. The cops came, my car has been totaled, and I spent the next day at home letting the soreness wear off.
I was back in the neuro-op’s office on Thursday. He said the MRI confirmed what the radiologist saw on the CT scan – a mucocele. He officially passed me off to the ENT surgeon, who I will see on March 29. I’ll have more of an update after then. While the surgery is not immediately necessary, it should be done as soon as possible. My only request is that the surgeon lets me wait until after the BAA 5K. I don’t care about the race itself that much, but I won’t be considered a Distance Medley participant if I don’t complete all three races. Given that the race is now 4 weeks away, I figure that’s perfect timing for the surgeon to get me on her schedule anyway.