The One Year Anniversary

One year ago sometime around this I was sleeping in an ICU.
Weird to think about.

Things are currently okay. I'll go with just okay.
I'm a heck of a lot better off than this time last year, that's for sure. But no where near perfect.

My head still hurts, at some level, almost constantly. A lot of people have told me they'd rather have any other pain than a headache. Try to imagine having a headache, all the time, for over a year. I'm not saying that for any kind of sympathy, I swear. Just, imagine how tired and grumpy you might be. I'm usually tired, and pretty low on patience, and despite my sweet exterior, pretty grumpy. I often think of the saying "I'm sick and tired of being sick and tired." I'm just tired of hurting.
Every once and awhile I'll take a motrin or tylenol, and sometimes it does enough to take the headache down to a regular level, but I hate to rely on those and further destroy my stomach lining and liver.

A couple weeks ago I headache that got worse and worse until I was squatting on the floor in tears. The kind that hurts bad enough that it feels like it's going to make you puke. I was close to going to the ER, but a friend got me some motrin, and that cut it down enough to make it through the night.

Mostly, I just try and tough it out.

There have been a few weird things going on like that that I've attributed to reaching all these "one year" milestones. You know, "psychosomatic" things. The headache episode was much like the one that took me to the ER in the first place to discover the tumor, and happened around that 'anniversary'. Just a week or two before that I had a week of nagging chest pain that eventually spontaneously resolved. Last week I had a recurring dream of being in a pre-op before another surgery. I'm thinking it's all in my head.
As much as I love the fall, I'll be happy when the new season passes.

My left ear, of course, is still deaf. Funny how before surgery I thought deaf meant no noise. Instead that constant "hiss" is always *always* there, driving me crazy. The single-sided deafness (which I refer to all the time as being "half deaf"), was one of my least concerns before surgery and, aside from the headaches, is actually one of the biggest annoyances now. It's hard to enjoy going out when you can't hear what's going on (or really, can hear it, but can't understand it). Sometimes it's even hard at work, or home, or anywhere understanding words coming from someone else's mouth is needed. Both "huh?" and the smile-and-nod routine are getting old. Some people even seem offended when they speak to me on my deaf side and I don't respond. Sorry guys, it bothers me, too.

I still haven't checked out any 'devices' for hearing. My right side seems overwhelmed with all the work as it is, and I don't know if something like a transear would help or only serve as more work for the right side of my head.

I still don't sleep on my left side. I can lay on it for a little bit now, which is an improvement. But, yeah, one whole year post op and I can't lay on that side of my head. At least my right hip has toughened up and doesn't hurt anymore.

My face is making the most improvement of almost anything.
At my last visit with Dr F, my House-Brackmann score was up to a 3/6, so I won't be requiring any surgical interventions on my face. Woohoo! I did get a referral to a facial specialist who put a few botox injections in my chin and outside corner of my left eye. The reason for these is that when the nerve heals it sometimes heals in unnatural ways, making the face combine movements it shouldn't (called synkinesis). So, for example, when I tried to smile my left eye would close. The botox works/worked to kind of block the nerve on one part (the eye closing part) while learning to improve the other part (the smiling part). I also went for a session of facial PT.

Though I think both things were really effective, I have no desire to start increasing my time at Johns Hopkins again. It's completely a mental thing (okay, and maybe a little bit an insurance thing). I also am just not ready to work on my face yet. I know what exercises I could/should be doing for my face, but it's hard to look in the mirror at your messed up face and try to force to to move and just watch as it doesn't.

None the less, I think you'll see the improvement (and hair growth!) in these 1 year pics.

I included the new 'pose', puckering, because it shows that there are still parts that are way off. Benjamin doesn't think my "teeth are upside down" anymore, though, and actually has commented awhile ago about it - "Mommy! Your teeth aren't on upside down anymore!" I expect continued improvement, but am highly doubtful that I'll ever be back to 'normal'. Or, if I am, I'm sure it will be at a much older age. I don't mean this offensively, but a 'normal' face at 50 doesn't exactly make up for a messed up face in your mid 20s, you know?

Speaking of hair growth - it's about chin level now (with bangs). Enough for a ponytail with lots of bobby pins on the sides. The interesting part is a spot in the back that was part of what was shaved bald for surgery, which has come back as a weird texture. It's kind of kinky while the rest of my hair is knaturally wavy. So, when it's down, it does this weird flip out thing in that spot. I'm hoping it will one day resolve itself.

My left eye is still doing well, according to Dr L. I still have the gold weight in my eye lid, and I still use Refresh Celluvisc drops a couple times during the day and a thick eye goop at night. It blinks somewhat now, but still doesn't tear. No one knows if the tearing will ever come back. I'm not really sure about the future of my eye, but for now I just keep using those products to keep it moisturized and continue to see Dr L to check it out every couple months.
I had had some concerns a little while back about seeing 'floaters' and light flashes, just in the left eye, but he checked everything out and my retina and all still looks good.
The next time I see him I do need to ask about photophobia though, because my reaction to light is getting worse and worse. Being in the sun without sunglasses is not just bothersome like before surgery, but now honestly hurts.

My balance seems to be fairly normal. There is the random occasion when I clip a corner of a wall. Or in big crowds I feel a little topsy turvy, but fine in the normal day-to-day. I wasn't able to tolerate watching fireworks on the 4th of July, though. Something about the combination of the firework going up and popping across the sky, combined with the smoke blowing across to the side, made me really dizzy and uneasy. I also have the occasional "whoa" moment, of course when standing up too fast or something, but I don't think that's tumor related.

Sometimes I'll have random bouts of nausea. Never enough to make me throw up, but just bothersome. I have no idea if they are tumor related, but probably not since when I brought it up to Dr F at my 6 month appointment is when I had my last MRI and it was clear.

I got my NF2 test back and it was negative. It wasn't that much of a relief, though, because it still only identifies something like 60-70% of cases. So there is the chance I have it and the test didn't catch it.
I've found another cafe au lait on Brodie so I think she's up to 5 now, but she doesn't fit any other criteria for NF1 so it's hard to say if it's a problem or just how her skin is. After this summer, though, I saw more on Benjamin, so I'm still nervous / suspicious. We next see the pediatric geneticist in March. The good thing is they don't seem to have any speech or learning delays, which I believe would be the major potential NF1 issue at this age.

I really have been bad lately with follow-up care for myself and I'll be the first to admit it. I've seen Dr L faithfully, since his office is easy to get to, I like him, and I'm afraid of my cornea melting. Otherwise, I've not been the best patient. I haven't seen Dr T (neurosurgeon) since the six week visit when he upset me. I saw Dr F up until maybe 9 months post op, and then didn't schedule my next appointment for December. Due to insurance difficulties and just plain not wanting to go there, I'm trying to get out of Hopkins.

I finally did what I've been meaning to do for months and months, though, and made an appointment with neurology at University of Maryland. I'm hoping they can help with the headaches, get me my 1 year MRI, and just generally help me be better about follow up care. I just want one doctor handling my case, not a handful. That appointment isn't until October, though.



My advice (at this point) for new vestibular schwannoma / acoustic neuroma patients:

Take a moment to breathe. Research diligently but don't get scared into reacting too quickly. There are many choices for treatment, and not all are the best for everyone. Talk to a couple different teams (not just doctors at the same place, but different doctors at different hospitals/centers) and see what they have to say. It wont really postpone your treatment much to do that, and it probably doesn't matter anyway because the average patient has plenty of time. Talk to other patients and find out their experiences. Make sure you're aware of your options, because they won't necessarily be presented to you.
There is a whole range of outcome experiences, from virtually no problem to really terrible, but almost no one dies. For me, no one could have prepared me for how hard this was going to be. Physically, yes, but especially emotionally. So heal at your own rate. Follow your own schedule. You might be just fine at 1 week, but don't worry if you're not, because you will be eventually. Just don't let anyone push one too far beyond what you can tolerate. That said, a certain amount of challenge helps.
Also, I highly recommend keeping some kind of a journal or blog or list of things that happened or something. There will be good days and bad days, and sometimes on days when you're upset about having trouble driving your car or something more 'advanced', you'll look back and remember when you were proud that you ate solid food, or walked without someone holding you up.
I'm not going to lie, it might be tougher than you think you can handle, but somehow, you will.



Not everything's been bad.
I'm doing fine at work. We've started a new home-school year with Benjamin, and, despite thinking after surgery that it would never be able to happen, I started Mommy-and-Me gymnastics with Brodie. Clearly, life goes on.

One of the best things in the last year has been discovering new hobbies that I really enjoy. I've gotten way into baking and am a pretty good amateur cake decorator if I may say so myself. (Or at least, as I say to myself, pretty good for a girl with one ear, one eye, and half a brain.) I've even had a couple paid cake decorating jobs. You can probably look for a cake blog starting sometime in the next year.

But of course, the best part has been knowing the love of friends and family and even strangers who have been there all the way. I got to celebrate my 25th birthday a couple weeks ago with many of them, something I wasn't sure I was going to be able to do, and it was really great.
Thanks everyone.