The Saga of the Bum Left Eye

This post has been a long time coming. I've been delighted to see that people are still visiting the blog even though I'm not posting with any frequency anymore. Even though this started as a way to keep family and friends in-the-know on my progress, it seems to have been helpful reading to other "ANers" (people with vestibular schwannomas / acoustic neuromas), too, which is great. I've gotten a couple emails via the acoustic neuroma association support forums from people who have appreciated my story, and were looking to hear more detail about some of my experiences. These have reminded me that there is a whole lot of my story that has remained un-blogged. Maybe if I take the time to write it out here, it'll help others with the same questions who are too shy to ask.
(By the way- I love getting messages and I love answering questions, so if you have 'em, send 'em to me!)

So anyway, here's the saga of the bum left eye, up to this point. It's going to be a long one. I mean really long.

When I woke up from surgery the whole left side of my face was totally paralyzed. I don't remember well what I was able to see at the time. The crazy head spinning prevented me from holding focus on any one thing, I was pretty well medicated, and I didn't keep my glasses on all the time (not at all in the ICU) - so I just remember seeing blurs. My mom said my left eye was moving around like crazy. I do remember telling a doctor who asked me about double vision something like, "well, if seeing you with two heads means I see double, then yep", so I guess in the beginning there was some double vision.

Initially, my eye only closed about 50% and didn't really blink at all. Being fully paralyzed meant it also stopped producing any natural tears. Basically that left my eye exposed without any of the protective mechanisms it would normally have. The nurses were supposed to put lubricant ointment in every 4 hours and eye drops hourly. Though if I remember right, by the time I was out of the ICU my family was helping with the drops. I also had to wear a 'moisture chamber' over my eye at all times. After a little bit of initial confusion (I remember a doctor yelling at one of my nurses in front of me, saying that wasn't the correct thing over my eye and I was going to end up with a scratched cornea like that), the moisture chamber I ended up with was just a piece of plastic wrap. To get the little plastic circle to stick to my face, they/I had to put a ring of petroleum jelly all around my eye, multiple times a day. My mom got pretty good at cutting little eye patchy shapes out of plastic wrap. My face broke out from all the vaseline. The point of all this was to keep my unblinking, unclosing eye from drying out.

While in the hospital, the day before discharge (so roughly 5-6 days post-op), I met with a doctor who evaluated me for an eyelid weight . He said he would like to do a platinum chain weight, which could be done later as a simple outpatient procedure. So after I got home and settled, I would come back to Hopkins eventually for that. In the meantime, in my hospital discharge instructions I was told to keep doing the drops hourly, ointment every 4 hours, and moisture chamber, and to follow up within a week with a doctor who could evaluate my eye. Initially I went to a doctor in the same practice I'd been going to since I was 8 and first got glasses, but she referred me to Dr L, a cornea specialist. I mentioned to the first eye doctor that I having trouble and feeling irritated with sleeping, because the stupid eye wouldn't close and I could still see light (try to fall asleep with someone holding your eye open- not so easy). The doctor said I could try taping my eye closed, so we bought some steri-strips and tried our best, but it didn't work. The first time I saw Dr L he said taping wouldn't work because though the muscle that closes the eye was paralyzed, the one that keeps it open wasn't, so the strength of the unopposed 'live' muscle (for my lack of a better word) would be too strong to tape down. I also tried using a pirate style eye patch, with some success, to at least make it dark for that eye.
I saw Dr L for the first time at roughly 2.5-3 weeks post-op (I can't remember exactly). He'll attest to the fact that I was in pretty rough shape at the time. I couldn't really see much other than blurs through the ointment filled eye, and the vaseline covered plastic patch over top didn't help, either. I remember him testing my cornea with touching it lightly with a piece of cotton. The good eye jumped and slammed shut immediately. The bad left eye got poked and poked with no response. The good news was that my Bell's reflex (better known as Bell's phenomenon, where your eye kind of rolls up into your head when you close it) was intact, meaning that even though my eye wasn't closing, the seeing part of the eye was being a little protected when I tried to close it, by rolling up so there was only white showing. He recommended I get an eyelid weight implant as soon as possible and told me to follow up with him in a week.

I called the doctor from the hospital who was going to do the platinum chain, but his secretary told me he was out of the country for the week an wouldn't have a time available for another couple weeks. Dr L had given me a cell number I could reach him at, so I called to ask if the wait time I'd been given was okay. He wanted it done sooner, so he got me an appointment with Dr D to put a gold weight in within a week (some say the platinum chain is better because is lays flatter so it's less noticeable, but both the platinum and the gold do their job and are MRI safe. I think what really effects the cosmetic outcome is the skill of the surgeon).

The gold weight surgery was a quick outpatient thing, but that didn't make it anymore fun. First, they put numbing drops in my eye so that if the surgical prep solution (betadine / iodine / whatever) got in it wouldn't burn. Of course the numbing drops burn, too. Then, in the little OR, they did the scrub prep and put a drape around my face, except for the eye. I was the last case of the day and the radio was on and the nurses were chit-chatting. They knew I was a nurse, too, so I think they were a little more laid back and probably expected me to know more than I really did. I remember one asking "Do you need the oxygen mask on?" and me responding, "I don't know - Do I??" It seemed like a silly question to ask a patient. If you're in this situation and are offered the mask, say yes. The stupid drape covers your mouth and nose and can be kind of suffocating.

Of course because they were operating on my eyelid, I tried to close my eye, but the whole point of the operation was that I couldn't really close it. The procedure was done under local anesthetic, so there were a couple "bee sting" pinches around my eye. I still felt a pinch and a slicey feeling when they cut the eyelid open, and I think I said "I can feel that!" but either no one heard me or they didn't care or I was supposed to feel it - I don't know. The worst part wasn't so much the feeling, however, as it was the creepiness of suddenly seeing light through the thin pink membrane of just the inside of my eyelid, while the outside was opened up. I'm sorry if that's gross, but that's the reality of it. It makes me nauseated just thinking about it. I just tried to focus on struggling to keep that eye closed, even though it felt like it would pop open and ruin everything at any moment.

The way the procedure is done, a little 'pocket' is made in the eye lid and the weight is slid into it and secured on the ends with tiny stitches, then the eyelid is sewn back closed. After a little bit of time in the recovery area, Matt was allowed to take me home. I had brought some sandwich bags filled with frozen peas as I had read that these would be my best friend for awhile. For discharge instructions, I was told to ice 20 minutes on and 20 minutes off for the first few days, then switch to warm compresses. I was also given some antibiotic ointment to put on the incision. With the weight I got to loose the 'moisture chamber' and go down to lubricating ointment just at night or as needed, with eye drops as needed in the day.

For the first couple days after the gold weight surgery I spent lots of time with frozen pea bags on and off my eye. I remember when the local anesthetic wore off around when we got home. It hurt sooo freaking bad. The pain in my eye combined with just general misery over two surgeries pretty close together really got to me. I was afraid that in follow-up the doctors would tell me I needed more procedures, and I just didn't think I'd be able to take it if they did. At that point I still had no movement and very little, if any, tone to the left side of my face, so there was the possibility looming over me of needing a graft or other procedure for the facial nerve.

After the weight surgery, I had maybe 80% closure of the left eye. There are weights of different sizes, I'd be guessing if I said what mine is, but basically the doctors try to find a weight that will help to pull the eyelid closed when you want it closed, but still allow the eyelid to open and not look overly weighed down. Dr D did a really nice job and the weight blends in pretty well. The incision was done in the natural crease of my eye, so though the left eye did for sure look a little different than the right, it didn't necessarily look 'wrong'.

I experimented with many different eye products before finding the ones that worked best for me. At first I bough vials of eye drops, but Dr L said I needed to get the preservative-free 'bullet' kind, as the preservatives can break down the cornea over time if used with the kind of frequency and duration I needed. These kinds are little 'single serve' eye drop vials with maybe 4 drops in each one - I pop the top off, use the drops I need, and toss the whole thing. A little wasteful, but what-can-you-do. I tried using some of the cheaper kinds of drops, and many of the kinds the eye doctors offer as free samples, but they were all so thin that they would evaporate in no time and I'd need more within 30 minutes. I eventually tried a brand called Refresh that offers a super thick, almost gel-like drop, called Celluvisc, and they worked magic. They cloud and distort my vision for a good bit after putting them in, but they are really soothing and they last.
All ointments are not created equally, either. The ointments are tiny metal tubes that dispense a thin line of goop, which I try to put nice and neat along my lower eyelid. It took a month or two before I could do it myself without inadvertently poking my eye (and remember, no feeling, so I didn't know I was poking it). Anyway, the ointments are made up of mineral oil and white petroleum, but different brands have different ratios. Some are really thin and melt away in no time - namely these are the cheaper name brands. Target's Up and Up brand is actually my favorite, but I'm not sure they're making it anymore. Refresh PM is only other kind I can use - it's thick enough and preservative free. After putting that in, my vision is definitely very clouded - I mean it's basically vaseline in my eye.
All of these products ran me roughly $20/week in the first year post op.
Dr L also trialed me on a product called Lacrisert. It's a little thing that looks like a sprinkle, and you use a special tool to put it in the pocket formed by pulling out your lower eyelid. As it sits in there and warms and swells up to a little squishy jelly thing. It's supposed to stabilize the tear film. I tried it but it kept popping out from that lower eye lid pocket and sticking to the middle of my eye. Then things would start to hurt worse as I tried to get it out. My guess is I didn't have enough tone in my lower eyelid to hold it in place properly.

I remember around Halloween 2009, so two months post-brain surgery, one month post-eyelid weight, I was miserable. My eye would just burn and burn, and even the thickest drops would wear off after 15 minutes. Dr L assured me that the burn was actually kind of a good thing, as it was my eye warning me that it was too dry. (By the way, if you're wanting more information, the medical term for dry eye due to insufficient lid closure is "exposure keratopathy".) Over time, the over-exposed cornea will become numb to the dryness and not burn so much.

The next step to try to fix the dry-eye problem was to put in a "punctal plug". This is basically a little silicone plug that fits into the tear duct (you know, that little black dot in the inside corner of your eye lid), preventing the drainage of tears. The plug procedure was a little two second thing done during one of my regular eye exams with Dr L. No cutting, pain, or drama involved. With the plug in, I immediately felt better. The drops I was putting in weren't immediately washed out of my eye. The only down-side was, that the only way for the drops to get out of my eye, besides evaporation, was to run down my cheek. It's still a problem now. It doesn't really bother me much, though. It's a small cosmetic type issue in exchange for a not-on-fire eye.

The Celluvisc drops really do leave a nasty mess, though. They dry with kind of a plasticy film, so I can have ugly streaks down my face from time-to-time, and my eyelashes get dried together in the weird plastic film. I loose a lot of eyelashes on that eye from peeling the eye drop mess out. Gross, yes, but again, it's just a little thing to deal with.

I should mention the the risk for not doing all this, aside from horrendous burning and discomfort in that eye, is that my cornea could get so dry and damaged that it ulcers or perforates (or, I was told, "your cornea could melt"). This can be tough to repair, and can lead to blindness. The big hope was/is that all of this will be temporary measures while my facial nerve heals. If my face ever recovers enough to have a full blink and produces appropriate tears on it's own, all of these things - the weight, the plugs - can be reversed.

For a good while things were fine. Appointments with Dr L started at 1 week apart, and then with each good check-up he added another week or two between appointments. Each time he said he was amazed by how good my eye looked considering the amount of exposure it had.

Then one night at work, at just over a year post-brain surgery, I noticed my eye felt kind of dry. As I looked at it in the mirror, I saw a little crater looking thing in my cornea. I freaked out and made another nurse look, and she saw it too. I piled the eye drops in, and called Dr L first thing in the morning, assuming there was some terrible permanent damage. The good news was it wasn't terrible permanent damage. The bad news was there was a little crater in my eye. It was a dellen, "a saucer-shaped excavation at the periphery of the cornea which is caused by a local dehydration of the corneal stroma, leading to a compression of its lamellae". Basically, when the spongy layers of the cornea get dry they shrink and harden up, just like a dish sponge. Within 24 hours of frequent eye drops it was puffed back out to normal. Unfortunately, this was a pretty big jump from my usual excellent exam. Along the small slit where my eyelids never reached, there was not just the dellen, but also small areas of cellular damage from dryness (SPKs or 'superficial punctate keratopathy'). Because my eyelids never touched each other anymore, the film of eye drops never spread fully across the eye - that's part of what a blink is for. Also, for some reason I wasn't blinking, in either eye, very much.

The first thing we did was to put a punctal plug into the upper tear duct. That plugged the last escape route eye drops could take aside from running down my cheek.
By this point I had regained a fair bit of movement in the left side of my face, but it was centered around the corner of my mouth, and didn't go any higher than my cheekbone. I'm told facial nerve regeneration frequently takes this path, working from the bottom up. So, even though there was improvement in my face, we had no guarantee it would continue upwards to my eye anytime soon. Dr L referred me to another eye doctor, one who had been his med school instructor at the University of Maryland, for a tarsorrhaphy. A tarsorrhaphy is a a surgical procedure where a part of the eyelid is sewn together in order to narrow the opening of the eye, thereby protecting more corneal surface.

I really hesitated on the tarsorrhaphy. After the second punctal plug I noticed the first return of natural tears. My eye was so not used to them at first, they almost burned. They happened randomly and sporadically, though, not when I felt my eye was dry or when I cried. Still, I wondered if these tears would be enough to help my eye, without additional procedures. Also, with my face just starting to look slightly even and normal, I was hesitant to choose to do something to make it worse. Ultimately, despite my hesitation, I decided to go ahead with it. The tarsorrhaphy is kind of a last effort, there's nothing more we can do beyond that besides just sew my closed, which Dr L said he would have done in the beginning if he had thought it best. I figured once I got it over with at least I could say I tried everything. And maybe I'd save some money in eye drops.

The tarsorrhaphy was not fun. I don't know why I told the doctor that I didn't have a problem with people working on my eye while awake. I should have asked for a xanax or valium or something. If this dumb eye needs one thing more they'll have to knock me out for it - no more local anesthesia only.
I thought that there would be some little stitches put in and that somehow the eyelids would magically fuse at that spot and then the stitches would come out. What I didn't know is that the way the eyelids 'magically' fuse is that they are serrated with a scalpel before being stitched. Much like the gold weight, the whole thing started with a numbing drop in my eye and a surgical scrub and drape on my face. Then I got a couple shots of local anesthetic and the doctor got to work. University is obviously a teaching hospital, so there were other residents in the room while the attending did the work. I don't think a tarsorrhaphy is a very common procedure, so lucky them.
Once the anesthetic was working he pulled my eyelids away from my eye and abraded the narrow surface (the flat part where the two lids touch when the eye is closed - I don't know the technical term) with a scalpel. That didn't really hurt, but I could feel something, and since I didn't know that was a part of what was going to happen I was surprised by it. Plus, since he was working, literally, right in front of my eye, I could kind of see, in a blurry, super-close-up way, what was going on. Then he carefully stitched the two lids together, taking care to preserve the eye lashes. Two little foam parts were used in the stitches, I think to kind of buffer the skin from the stitch. I imagine if they didn't use them the soft, thin skin could just tear through the stitch. Yuck. At one point I breathed and the drape went into my mouth and I got scared I was going to suffocate. I tried to blow it away but couldn't. Then I remembered I was awake and could use my arms and just reached up and moved it. I guess all the people it the room were focused on my eye.

When all was done I sat for a minute to get myself together and then Matt took me home. At first my eyeball had no idea what was going on. My left eye kept going cross-eyed in an attempt to 're-center' itself, I guess. There were no real discharge instructions, just come back in two weeks to get the stitches out. I used frozen peas and ice just like with the gold weight, and just like the weight, when the local wore off it really hit me. It was painful and miserable and I hated that I decided to get it done.

Emotionally, the tarsorrhaphy was a lot rougher than I was expecting. Especially with the white padding things sewn on, it was just so ugly. In the first week my eye got swollen and bruised and bled and was crusty. I used sterile saline and q-tips from the hospital to clean the crust out, even though they didn't tell me to. Despite how much I hated it, my eye did feel better and I was using fewer eye drops pretty much immediately. The first time I tried to close my eye and the two lids finally met each other, it felt so weird. It had been over a year since the upper and lower lids really touched! My left eye stopped trying to cross after the first couple hours.

A couple days before I went to get the stitches out, my eye started to hurt. Really hurt. Like there was a piece of glass in it hurt. I rinsed it and rinsed it and while it would be better for a short while, after not too long it would feel like there was a shard of glass in it. When I told the resident who was going to take the stitches out, he looked and said everything looked fine. I hate that. I hate when I know something is not fine, but they look and say there's nothing there. Luckily, the attending looked and found the source of the problem. A rogue eyelash from the newly stitched area was growing, not out into the world, but straight down into my eyeball. The resident looked again and could barely see it, much less get it out. The attending then struggled to get in there, and managed to pluck it. It was pretty nasty how deep under the newly-formed corner of my eye he had to go, but once the eyelash was out there was immediate relief. An eyelash stabbing your eye for a couple minutes is just not comfortable, never mind a couple days.
The stitches came out easily and the doctor told me the best thing a doctor could say, "You never have to come back to see me." I was to follow up with Dr L for any issues.

Even with the stitches out, I really struggled with how the "tiny" (as the doctors feel it is) tarsorrhaphy changed my face. Now again I had two vastly different halves of my face. Did you know facial symmetry is one of those weird things humans unconsciously relate with attractiveness? As much as I wanted to joke about my "one Renee Zellweger eye", it's pretty depressing to just look like somethings wrong with you. While right before the tarsorrhaphy I would get comments like "Oh, I didn't even notice" when I told new people my story, I've started getting "yeah, I could tell something was different with your eye" or just "what's going on with your eye." The tarsorrhaphy is reversible, just like everything else on that eye, but it sounded like the likelihood of having it reversed anytime soon is pretty slim.

A week or so before my scheduled follow up with Dr L, I noticed another eyelash trying to grow into my eye. Not wanting to go to the doctor early, I decided I was going to pull it out myself. As soon as I did, though, I got that shard of glass feeling again. I assumed in my stupidity that I scratched my cornea with the tweezers. So I went in to Dr L's the next day. No scratch, but there were more rogue eyelashes. He plucked them out and said if they return he may need to burn those couple off permanently so they don't keep doing the same thing.

That about takes us up to now. There have been no more eyelash issues, thank goodness, aside from the sticky, crusty mess I'm used to from the eye drops. I still have the gold weight, the tarsorrhaphy, and two punctal plugs. With all that, I get about 95% closure (about 1mm still open) for a normal eye close, and pretty much all the way if I really try to squeeze it shut. As far as I know, that random issue of a decreased blink rate has resolved on it's own.
I still use Refresh Celluvisc eye drops and refresh PM ointment. Dr L gave me a new sample of lacrisert to try again, now that I have some natural tears and better tone from the tarsorrhaphy, but up till now I haven't tried it again. I just keep forgetting. Plus, I really disliked it the first time and it just seems like another eye thing to spend money on. (With my sample I got a coupon for $60 off. If that's the coupon discount, I'm not sure I want to know the item price.)

My eye routine is to put drops in as soon as I wake up, then as needed through the day (or night if it's a work night), and then a line of ointment in it anytime I'm going to sleep. Some days it tears on its own really well, and the morning drops are all I need. Some days it doesn't really do much, and I need to use drops through the day. I'm kind of photophobic, which means I don't like light because it bothers my eye. I was never a big sunglasses person, but they are a definite necessity now. I also walk with my head down a lot when I'm outside.
A lot of people want to know about my vision in the left eye. Technically, it is no worse off than it was pre-op (I wear glasses anyway). However, because of all the stuff in there, I don't see very well. Natural tears and eye drops can't drain, so they tend to distort things. Ointment is thick and cloudy. Dry eye is cloudy, too. And the tarsorrhaphy greatly limits my peripheral vision on the left. I'm pretty used to it by now, and despite the occasional depth perception issue (ex: I have trouble knowing when a glass is full when I'm pouring) the vision limits don't really bother me.

And we'll see where the saga goes from here!