The One Year Appointments

A couple of one-year post op appointments to update everyone on...

I started seeing a neurologist about my headaches. I'm sure I've described them all here before. I basically have a non-stop low-grade (2-3/10) headache that never goes away. A couple times a week it'll go up to a mid-grade headache (5-6/10) and then a couple more times a week it'll be more in the 'migraine' territory (7-8/10).
So, they took my history and did an exam and the standard stuff, and gave me some prescriptions to try. Of course, they also said/implied that there might not be much they can do for me as long as I'm on a funky nightshift schedule and don't sleep or eat at regular times. Makes sense I guess.

I did a one week steroid taper, I guess to make sure any residual swelling was calmed down (? I guess I should have asked better questions). Also, they prescribed nortriptyline to take daily. This drug is typically used as an antidepressant but can also be used in lower doses for migraines/headaches. I think the hope here is that it will generally lower the level of everything so that the constant headache is gone and the others are bumped down into the 'tolerable' level.

After a month on nortriptyline , I can say the up side is that it does help with the basic level headache. I may have even had a large portion of a day with no headache at all! The down side to it is it makes you sleepy. Sometimes nortriptyline can also be used to help people who have trouble falling asleep. It was a bit of an experiment to figure out a good time to take it every day, since my schedule is so wacky, but I think I figured out 4:30 am is the best time. It means on a 'dayshift' day that I have to wake up to take it, but then I get to 'sleep it off a little while'. Then for a 'nightshift' day taking it at that time means it's close to when I get to go home and go to bed (usually 8:30-9 am).
These probably aren't things the average dude taking this has to worry about. They usually prescribe it to be taken before bed, or at least around dinner time when you're pretty close to bed. But in case there is some other night-shift vestibular schwannoma patient with post-op chronic migraine somewhere else in the world, maybe this will be helpful information.
I think the fatigue will get better with time as I get more and more used to it. The first day I took it I took it at like 9am and spent most of the day on the couch before declaring "I can't do it!" and going to bed around 6pm. But it was only like that for one day, so that's good. Still, brain surgery patients are pretty tired people to begin with...

I go back in January for another follow up. I'm not sure if they'll adjust things or not, since I am still having the severe migraines and taking motrin or tylenol probably 4-5 times a week. :/

Appointment #2 was for my 1 year MRI, and subsequent neurosurgeon review of it.
The MRI went fine. I really liked the tech that did it and will probably try to specifically request him next time. I think his name was Chris. When he put the IV contrast in my arm didn't feel on fire at all! Of course I got my CD copy and ran home to review them myself. I was pretty amazed at how "normal" looking they looked! I'll have to put a progression of shots together sometime. To me, a more-or-less untrained eye, it looks like a lot of healing has gone on, which I guess explains part of my needing a million hours of sleep a night.

I really didn't want to go to a neurosurgeon, as I find I don't like their attitudes, so I asked the neurologist if I really had to, and she said I did. She said they're the best person to review the MRI. So that's pretty much all the appointment consisted of. Well, one and a half hours of waiting, with no magazine but "The Economist" and some travel brochure on the table to read, and then a 5 minute review of the MRI, a "looks good", and "okay, see you again next year."
I think maybe they should increase the number of "post operative care" classes new surgeons get in school.

The last appointment, or appointment set, was for my eye. I was supposed to see Dr L for my regular eye check early in November. However, about a week and a half before that I was at work and noticed my eye really bothering me. I went into the bathroom and looked and it was all terrible and red and I swore I saw a little "divot" in it. Another nurse looked and saw the "divot" too so I pretty much cried and assumed I had a corneal ulcer and worried all night until I could call in the morning.

Dr L saw me the same morning and instead of the normal "Still looks great! Keep up the good work!" It was more of a "hmm...." There was a thing in my eye, but it wasn't a ulcer - it's something called a "dellen". The way he explained it to me, the cornea is made up of layers that are normally kept moisturized so they're kind of 'spongy', and like a sponge, when they dry out they get harder and kind of shrink down, creating this kind of crater looking thing - the dellen.
If you're really interested, here's a neat video I found of an eye with a dellen. This is what I saw in my eye. (If you're creeped out by eyes, don't look - but there's no blood or anything.) While it's not an ulcer, it's also not good, and I'm pretty sure if left untreated could lead to worse issues like a corneal ulcer.

The problem is kind of three fold.
1) My left eye still doesn't really tear on it's own. I still do lots of Refresh Celluvisc drops in the day and eye ointment at night, but maybe I wasn't doing enough. I don't know. It's possible that since I put the drops in "as needed" and my over-exposed cornea is becoming less and less sensitive, I'm not able to tell when it's needed until it's really really needed. If that makes sense. That's just my guess, not anything expressly told to me by a professional.
2) Though the gold weight helps, my left eye still doesn't really blink well. It kind of 'twitches'. And when I go to close it there's still maybe a millimeter that's left open. Blinking helps to spread that tear film (or in my case, eye drop film) across everything. If I'm not blinking all the way, it's not getting spread all the way. The dellen was along the line where the tear film doesn't reach very much.
3) For some reason, I'm not even attempting to blink that often. In both eyes. Dr L observed me without my knowing it (Benjamin was in the room so he distracted with me with chit chatting with him. I didn't have my glasses on so I had no idea he was actually looking at my eyes.), and he said I only blink once or twice per minute. That's not normal. At least for adults. Babies only blink about that often, but adults are more in the 10-30 times per minute range.. at least in conversation. (Just did some interesting reading and found that blink rates are known to be different depending on the task, so you blink less when reading, for example. Makes sense.) Dr L said he doesn't know why that's happening.

What this means is, we've got to do more to protect my eye. So far we've got the gold weight, the punctal plug in the lower tear duct (so tears stay in my eye longer instead of draining through there), and the drops/ointment. Right off the bat Dr L went ahead and put a plug in the upper tear duct. So now there is no draining of tears at all (except down my cheek). He also referred me to another doc at U of MD.

I went to see the other doc last week. The good news is, when the resident did my exam she said the dellen wasn't there (Dr L had said, when I asked him, that they can resolve. Again, like a sponge, the cornea can re-wet and go back to normal. Later I read somewhere that this can happen within 24 hours.). I did have some "SPKs", which she wasn't impressed with, but I'm pretty sure that is still a change from my baseline. "SPK", I'm just now reading, stands for "Superficial punctate keratopathy". According to the Merck manual, these are "the death of small groups of cells on the surface of the eye". In an email from Dr L to the new Dr, Dr K, which he was nice enough to cc me on, it says I have "moderate central SPK". The resident told me these SPKs are along the 1mm where my eye doesn't close.

So the three options I was presented with were these:
1) Continue to use the drops and ointment, trying to use them more often, and see what happens.
2) Do something called a "lateral tarsorrhaphy", which is like stitching the outside corner of my eye closed so the tear film covers the injured area better.
3) Try a heavier gold weight.

#3 is pretty much out. I really don't want my eyelid sliced into multiple times, and sometimes the weight I have feels overly heavy to that thin skin, so I don't want it heavier.

I'm dancing between #1 and #2. I'm scheduled for the tarsorrhaphy with Dr K the wednesday after next, but I'm not convinced it's what's best. Initially when Dr K said it would probably help I was like "well if it'll help, let's do it!", and that's why I scheduled the appointment. But since then a few things have changed. First, I've noticed natural tearing in my left eye! It's not a lot, but it's there. I'm wondering if it'll be enough help to keep things okay. Second, I read more about the procedure.

Of course doing an 'image search' of what you're about to have done is never a good idea. So that scared me first of all. Then, I keep reading about how how 'rare' it is and about 'poor cosmetic outcome'. I know it'll make one eye look different from the other. On one side who cares since my face is already different from one side to the other. On the other side, do I really want to make it *more* "messed up"? Also, the 'rareness' of the procedure doesn't bother me so much from the standpoint of anything going wrong - I mean really it's a very minor thing. But, if it's so rare, like a last resort thing, then does it really need to be done now at the first sign of anything wrong?
I don't know. I'm going to have to call Dr L tomorrow to talk to him because I'm really fretting over this. I don't want to risk the health of my eye, but I just don't know if this is the time to be more conservative.

If anyone's interested, there's a description and graphics (drawings, not real creepy eyes) of the procedure here. It's just too late at night to type it all out now.