You Asked...

OK, well maybe you didn't, but enough people asked me to let them know how my first appointment with my oculofacial surgeon went that I decided it would be too much work to individually update everyone (except my mom, because she's a mom).

So if you don't care about my medical journey with Graves and thyroid eye disease, try again next time. I promise my next post will be witty and sarcastic...so, the usual. For now, here goes:


I met Dr. Covici today. His medical assistant asked me why I was there. I was flattered she couldn't tell right off the bat by my buggy eyes, but she asked me what symptoms I was having. I told her none. I guess that wasn't the right answer, but considering how awful my eyes were last July when they literally swelled out of my head and caused the worst pain I've ever experienced, I have no actual symptoms. The bugginess of my eyes is permanent because the disease has run its course. Look it up if you really don't know. She actually said to me, "Sooo...you jsut want to get established as a patient in case anything goes wrong?" I told her I was there to discuss surgery.

When he came into the room, he was wearing glasses with purple plastic frames and rhinestones. I didn't judge. I instantly though, "This guy's cool." He looked at me a second too long and because of that, I could tell he had already diagnosed me. He said so right away. I'm glad. It was reassuring that he could look at me for two seconds and know why I was there. Sure, he had already reviewed the records from my Florida neuro-opthamologist, but reading things on paper is one thing. And on top of already having read that, he asked me to start from the beginning and describe the timeline, symptoms, treatments and outcome. So I did. At some point during all this, I must've made a funny face because he stopped me to say, "By the way, these aren't my glasses. I left mine at home and I'm borrowing these." I told him I had originally thought he was cool but now I wasn't so sure. Any guy who can rock purple frames with rhinestones is A-OK in my book.

He then proceeded to put that yellow stain on my eyes so he could check my eye pressure. I've had this done a dozen times so I didn't even think about. When it came time for him to exam my eyes through the big huge contraption, he said, "Oh crap, I screwed up." He didn't realize I was wearing contacts and so the dye stained my contacts a neon yellow. He apologized profusely and said he only does that about once every three years, and I was his latest victim. When I went to the mirror to take them out, I looked so cool. I asked if I could keep my neon yellow contacts but he made me throw them away. Party pooper...

Back to the exam. He said my eye pressure was good and my eye muscle strength and range was outstanding for someone with thyroid eye disease (herein referred to as TED). Because I haven't had an MRI on my eyes since July, he wants me to have another one done. So I'm spending what should be the first hour of unconscious tonight in the MRI suite at the hospital. That's right, they got me an appointment at 9 p.m. and I took it. I want this process to get moving. For those of you who know about my bedtime and school night rules, you will appreciate the fact that I am treating this 30-minute MRI like an overnight sleep study. I'm in my most comfy sweats and socks (even though I hate socks) and glasses so that the minute they let me leave, I can head straight home to my puppyless bed. Yes, that's right. My dad went to our cottage for a long weekend and Rags loves it up there so I let him go. I know he'll have fun but I miss him already and I don't care if that's abnormal.

He told me to be patient. If tonight's MRI shows the TED is still progressing or hasn't regressed enough since July, he'll have me wait until probably October for my surgery. If it shows significant change, we'll schedule the surgery when I see him in three weeks. In the meantime, I have to go for a visual field test. I'm becoming an expert at those...it's when you sit in front of a huge bowl on its side, and cover one eye while looking for white dots that flash inside the bowl with the other eye. When the lights flash, you press the button. If you miss too many, you fail. They probably take your license, but I've always passed even though I feel like I'm failing during the test. It's because the muscles behind my eyes are swollen from the Graves, and if they swell too much, they can press on my optic nerve and cause blind spots or even total blindness. So let's hope I pass again.

If all looks good, it sounds like I'll be having a bilateral orbital decompression (OD), which means carving out space from the bone, the fat, or both, behind my eyes so that my eyes can go back into my head and I'll look normal again. But of course, as with any surgery, the possible side effects include double vision and my eyelids not coming back down to cover my eyes (because they've been shoved up and out for so long by my eyeballs). So it's possible I need three surgeries - OD, strabismus and lid retraction. The chance of needing strabismus isn't huge, but it's a real possibility. The lid retraction is almost guaranteed. He said he can sometimes tell during OD that the eyelid retraction will be necessary, and can do them both at the same time, but he all-but-promised me that won't be the case for me. When I asked why, he said I'm too young to risk an unnecessary surgery that could permanently disfigure me. He wants to wait until I'm fully healed from the OD (three months) before doing the lid retraction to make sure he does it perfectly. If I need the strabismus surgery, it'll be done after OD but before the lid retraction.

The most wonderful part about the whole appointment was when he asked how I tolerated the steroids. When TED sets in, the first thing doctors do is put you on prednisone because for many people, it helps will all the swelling. I took prednisone for some terrible neck pain right before Christmas 2010, and then again before I swallowed my radioactive pill (because some people develop TED right after RAI and the prednisone helps reduce the likelihood of that). So when I developed moderate TED, I was like, "Yes, sure give me anything that will help this awful swelling and pain!" Well, boy do I regret that. I was placed on 50mg of prednisone a day. Miraculously, I started it on a Friday afternoon and by the time I woke up Saturday morning, my eyes were back in my head and the pain was gone. However, prednisone is like an antibiotic - you have to keep taking it or else the problems will come back. And with prednisone, you can't just quit cold turkey because prednisone suppresses your adrenal gland. Your adrenal gland makes around 5mg of cortisol a day. Because I was taking 10 times that in prednisone, my body stopped making cortisol. So if you stop cold turkey, your body says, "Wtf dude?!" and goes into withdrawal. I took the same dose for three weeks, then reduced it by 10mg for another three weeks, and so on and so on for FOUR months until I could finally stop. Prednisone makes you twitchy and hungry, so I ate like a cow. It also makes you gain and retain belly fat. I got that, too. I gained a LOT of weight and developed acne for the first time in my life. Sure, I had a few pimples here and there since high school, but never acne. Developing acne at 26-about-to-turn-27 is not something I thought I'd ever have to deal with. It sucked, and I'm still dealing with it. The tradeoff? My vision. So I quit complaining about the acne months ago because I'd rather have adult acne than be blind. It's slowly getting better with a strict hygiene routine, a generally healthy diet and Epiduo. So anyway, where was I? Oh right, how did I handle prednisone? I told Dr. Covici I would do anything short of chopping of a limb to avoid prednisone every again and he said that was fine because I didn't need it. I sat there with my jaw dropped for about a minute. Everyone who's had OD told me I'd need it again. He said it did its job but obviously after four months, it didn't put my eyes back to normal so why would it this time? This was music to my ears. And eyes. And love handles and face and waistline.

He took some photos today, and asked me to bring some photos of myself before Graves and TED to my next appointment so he can see what needs to be done to get my looking like my old self. I asked about lypo during the OD, and he laughed. Unless I lose a bunch of weight, I'll never look like I used to!

Everything will be much easier for me after the surgery. I won't go home and cry after I see an old co-worker for the first time in five years who says, "I didn't even recognized for the first hour. You look different." or when the cashier checking my ID for Nyquil tells me I look nothing like my license picture (well, I do now because I just had a new one taken in February) or when someone comments on my "big, pretty eyes" because my whole life, I've had tiny, squinty eyes that I hated until I got sick. Now, I hate my "big, pretty eyes" and just want those little Chiclets back. Who knows, maybe Timmy (Tebow, obviously) will want to date me now that I won't look surprised all the time?

All I know is that while it sounds completely shallow, this disease is real and falls under both vision-threatening and depression-inducing when you asked any opthamologist or oculofacial surgeon. Also, this surgery is considered medically necessary, not cosmetic. So for anyone who thinks I'm making a big deal over nothing, go away. Things could be much worse (they always could), but this has been an extremely difficult thing for me to accept and now I get to do something about it.

I plan on getting glasses I actually like to wear, because I won't be wearing contacts for several weeks after surgery. My co-worker keeps telling me to get some Warby Parkers but those are just a little too hipster for me. My current frames at Target's Cynthia Rowley collection is more up my alley thankyouverymuch.

Now, there are some photos from my diagnosis that I've only shown a few people. I won't post them here, but if you care to see, here you go.