Larry:
Because different people have different conceptions of what 'brain tumor' means, you'll get very different responses when you tell people you have one.
Some will assume that you actually have a malignant tumor in your brain, which is usually fatal and very debilitating when it occurs. An acoustic neuroma isn't technically a 'brain tumor', more like a skull-based tumor, but we use 'brain tumor' as a sort of shorthand because explaining exactly what an acoustic neuroma is would cause most folk's eyes to glaze over before we finished the explanation. I know, I've tried doing that - with unsatisfactory results. Lately, if the subject arises, I just say
"yeah, I had a brain tumor. I'm fine, now". Its easier that way but it does risk getting the kind of slightly ignorant remarks you mentioned. This never happened to me but If I had said it's benign and was told to "leave it alone" I would respond by saying that would be impossible, because the tumor grows and makes big problems. I also would mention that, left unchecked, an acoustic neuroma can kill you. This is factual.
Like many fairly serious medical problems, our AN's don't carry a visible manifestation other than the imbalance factor, which sometimes makes us walk like a drunk. My wife got me to the doctor because of my imbalance problems that became glaringly obvious. My severe loss of appetite and noticeable yet unexplained fatigue were also a factor but, to the casual observer (not living with you day-by-day), none of these would have been obvious. Frankly, after my diagnosis I didn't want to look sick and, like many AN patients, just soldiered on with my AN issues, both before and after surgery/radiation. Fortunately, my post-op issues were few and minor. I consider myself blessed and tell people that, when asked how I made out
"with that brain tumor thing?" Now, over two years later, my AN experience is a fairly distant memory and just about never comes up in casual conversation with friends. I look good, feel good and appreciate every day.
Jim
