It’s not like I had an option. I had a tumor, acoustic neuroma. It was already almost three centimeters big, pressing my acoustic nerve, my trigeminal nerve, my balance nerve, my brain. It was already causing tinnitus, hearing problems, balance problems, head aches, neural problems (numbness points in my face).
Had it grown much bigger, bigger problems would have started. Delirium/disorientation (see Carol’s story), eventually whatever problems a tumor in the head can cause. Brain blood circulation problems, worse neural problems, worse any of the above, and eventually probably failure of all sorts of functionalities and death, I guess.
So yeah, I didn’t think twice when they told me it needed to be removed. And to be honest, I didn’t do much research on the operation and what life would be like after it. I didn’t want to know. I was scared enough of the surgery without knowing it all. The surgeon and ENT doctor did prepare me some, so no, I wasn’t totally clueless. But I only started reading other people’s stories after my own operation.
And now? Almost three weeks after that golf ball was removed? I walk the stairs ok, I have taken the dog out once yesterday, and will again today, for a couple hundred meters walk. I can stand (as opposed to sitting on a stool there) in the shower and wash my hair ok. I have energy enough for some normal house hold tasks, one at a time and then I need to rest again.
Some things that are lost to me right now will return. Like my balance, that is getting back to normal in leaps and bounds. And my energy levels will return back to normal eventually, if more slowly than the balance. And most probably I will be able to drive my car again. Unless I start getting seisures (again, see Carol’s story). Or if my hearing problems become too high of a risk in traffic. We’ll see.
Hearing is the major loss here. Even though the surgeon said after the operation that my acoustic nerve was not damaged badly in the surgery, I have come to realize what the ENT doctor said is true. My left ear will probably never hear properly again. It’s not 100% deaf, but not much short. I don’t know how much of a chance there is for that to change during my recuperation here, but I don’t have my hopes up. I am prepared to be half deaf.
It causes confusion to me, when I don’t understand where noises come from or even what they are, always. Walking down the street yesterday with the dog, I kept her close to me all the time, for I did not hear the cars as I have before, so just to make sure she didn’t jump to the street at a wrong time, just because I didn’t know to hold her tight at the right moment, I held her leash tight all the time.
I can’t hear our daughters speak if they don’t speak up or stay on my right side – haha, staying on the right side of me has got a whole new meaning now. Last week when I had made them some dinner and they were chatting at the table while I needed to rest on the sofa, I could not make out ny words even though I heard them talk. Only because I was resting my head lightly to a throw pillow, right ear down.
With any amount of background noise or people talking at the same time, I lose ability to understand words. My brain doesn’t separate fonetics; i.e. my ears don’t deliver the message properly to my brain. This has been something of a problem to me even before the operation, but now it, too, is worse. I have lost stereo and my good ear has yet to learn to compensate. If it does, and how much, I don’t know.
There might be help for hearing problems. Different types of hearing aids. I read about this implant for the deaf ear, that transmits the sounds to the hearing acoustic nerve wirelessly and creates a somewhat authentic stereo effect. But I guess those kind of apparatus cost a whole lot, and I should’ve had the right kind of insurance to get something like that. I didn’t, and don’t.
The ENT doctor at the puclic hospital said the hearing aids don’t help in these AN cases, so I’m guessing they don’t (yet?) issue those high-end thingamajiggies. So I guess I’ll just have learn to live with this.
And not having a navel piercing anymore. It bugs me a bit too, as stupid as it may sound. But I had a navel piercing, I liked it, and now it’s gone. They needed a bit of fat from my stomach in the surgery, to prevent CFL (cerebral fluid leakage) inside my head. And for that I had to take the thing out before the surgery, and naturally they had to take the fat from right next to my navel, so it was bandaged and bruised and stitched and whatnot for way too long.
Yeah, I can always get a new one. Maybe I will, maybe I won’t. Right now I don’t think I will. The first months of that were so uncomfortable. And right now I’m done with uncomfortable. Well, not done as in reality, unfortunately, but mentally most definately. Sick and tired of feeling sick and tired.
What more? The surgeon could not safely remove all of the AN from my head, with the risk of causing brain damage too high. So, though the tumor in itself is benign and won’t be metastasizing, the remaining part may well start growing back. So, want it or not, I’m still an AN patient and not over and done with it after the op. I will be monitored and with any amount of bad luck, need another operation sometime in the future.
In the mean time, my job here is to preserve my life as it is and as I best can. Get my balance back, learn to cope with the mostly deaf ear, get my energy back. Avoid stress, above all. As for right now, less than three weeks from the operation, I still am at some amount of risk for complications like meningitis, CFL, blood vessels breaking in my head. The most vulnerable times are over already, but still. And above of all, stress feeds the remnants of the tumor.
All in all, I could be much worse off. They say that if you need to get a brain tumor, AN is one of the best ones to get. It is benign, can be operated (or radiated, while still relatively small), and generally does not cause too huge damage once removed. And I am recovering quite nicely.
But when people ask how I’m doing and I respond “quite ok”, it does not mean that I’m enjoying my sick leave as an extra vacation. It means that I’m able to walk, shower, fix cappucinos in the morning, am not sleeping all day long though need to rest a lot, my head ache is moderate (to almost none due to pain killers), I’m slowly but surely taking small steps every day to full recovery. As full as it will ever get.
And that’s what I’ll need to learn to live with.
System Failure for the Masses 