Six Months Post-Op

Happy Six Months Post-Op to Me!

Check that out, it almost looks like my face isn't messed up! It still is, but at least it's not as obvious now. I've had people ask if I had more surgery (like to fix my face) and people who don't know me not automatically know that I must of had something mess with my face in the first place. I mean, it's not perfect. There's still something very 'off' about it. But I'll take my new House-Brackmann score of 3-4/6 over 6/6 any day.I saw Dr F and Dr S (ENTs) last week, and they were happy with the progress. No reanimation surgery for me! They said if they had done reanimation surgery, this is about as much 'recovery' as I ever would have gotten, but since the nerve is (miraculously) recovering on it's own, I can expect further improvement throughout the year.I do have some synkinesis (involuntary movements that go along with voluntary movements, as a result of mis-wiring of a nerve) starting, where when I blink the left corner of my mouth goes up. Nothing I can do about it, and that's how it will always be. It's hardly noticeable, but look for it next time you see me, because it's kind of funny / neat.

For comparison to before, here's the six month 'face face', smile, and eye closing.

My left eye is still doing well. Dr L (corneal specialist) is still amazed with how good my cornea looks when considering how much is it exposed. That eye still doesn't really blink, and for all intents and purposes as far as it's concerned I'm still totally paralyzed on that side. Dr L thinks it will improve, though. He said if he and Dr D (the surgeon who did the gold weight) hadn't thought it would improve, they would have just sewn it shut it the first place. Awesome. Target still enjoys getting about $20/week in sales of eye products to me.

Headaches are still there but seem to have 'leveled off'. I pretty much have a constant pain level 2-3/10 headache that never goes away, ever. Then about 3ish times a week it goes up to 5/10, and that's when I usually take something. I was up to 1000mg tylenol + 800 mg motrin taken together and it wasn't doing anything (except killing my liver and stomach lining) so now I take an Excedrin Migraine, and it seems to help enough that I get back to my normal 2/10 pain state. About once a week or week and a half I get a real 7-8/10 killer headache that makes me want to cry. I pretty much have to attempt to fall asleep when that happens. (Ps - On my pain scale, acute appendicitis = 8/10, childbirth = 9/10, and there will never be a 10/10 while I'm conscious.)
In the last three weeks, I've been nauseated on and off all day long. In the last week and a half, I've had increased dizziness and imbalance, clipping the walls, stumbling, and feeling weird when laying down.
I mentioned all this to Dr F, and he did his normal battery of tests and isn't really sure what's causing it all. He wrote me for another MRI, which I will get on Thursday. He and Dr S gave me a worksheet of neck stretches to try and see if they help the headaches. Apparently there is a theory that the disected neck muscles, when reattaching to your head, pull on head coverings and things they wouldn't/shouldn't naturally, causing headaches. So the hope is that these stretches reduce those adhering spots and therefore the headaches. We'll see. Of course my fear is that it's really another tumor causing all of this, but it's probably just a bunch of related things. either way, the MRI is coming up.

I got my lab slip for the neurofibromatosis testing, so hopefully I can get that done this week, too.

Despite the headaches, my mood has been much better. Going back to work has helped. I've finished "reorientation" and last week worked my first 12 hour shift. Things are going fine so far (unless someone is making complaints behind my back that I'm not aware of..) and next month I should be back to my regular full time schedule.

My hearing is what it is. Gone on the left and nothing I can really do. At home it's not much of a big deal, but when I'm out and can't control which side of me people are on it can be a problem. I've tried to warn most people at work that if they talk to me and I don't answer it might be because I honestly never heard them, not because I'm being mean. Also, places where there's a lot of noise/conversation around are even more of an issue than they used to be. I want to learn lip reading. That would be a helpful skill.

The options for single-sided deafness (at least the kind I have where the nerve is just dead), are mostly bone-conduction aids. The one most recommended is the BAHA, which works through a surgically implanted titanium piece with a sound processor attached. I really really don't want anymore surgery to that same site, especially since it's still tender. I can't even sleep on my left side yet. So for now, the BAHA is out.
There's also something called the CROS which needs two hearing-aids to take the sound going into the 'bad' ear and send it to the 'good' one. I'm not a huge fan of that idea, either, because I've read of people feeling like then their 'good' ear was muffled from the aid in it.
A somewhat new thing is the Transear, which is what I want but not many people seem to offer it. It works on bone conduction but is just a piece that goes in one ear. I need to find an audiologist who will do it. Add that to my list of doctors appointments that need to be made.

My tinnitus sometimes drives me crazy but I'm told it should subside somewhat over my lifetime. It's basically like a constant hissing/white noise in my left ear. It never, ever stops. They say that it's more tolerable when there is background noises to drown it out, which is somewhat true, but also sometimes it just gets louder when people are talking to me. It's best to just try to ignore it. U of MD Medical Center has a tinnitus program I may check out at some time.

I'm doing pretty much everything that I was before surgery. When Matt's at school I can confidently drive the kids and myself to the park and to lunch and to the store. Hopefully this week's tests will go okay and this blog will be coming to a close.