Three  years ago today, my husband and I were sitting in the waiting room at UCLA Hospital along with about a hundred other people. The sun hadn’t yet risen. It was cold, and I was nervous. Tom was scared to death.

The summer between tentative diagnosis and the MRI that confirmed it.

The summer between tentative diagnosis and the MRI that confirmed it.

He’d read more about this procedure than I had; he’d done more research. Since what I had read scared the crap out of me, I didn’t bother to read more than the basics.

An Acoustic Neuroma (or more accurately called a Vestibular Schwannoma) is usually benign, slow growing, and lays on top of the acoustic nerve and the facial nerve (nerves 7 and 8, I believe).

It used to be a rare diagnosis; but acoustic neuromas are showing up more frequently.

There are two types of treatment; surgical, and Gamma Knife Radiation. I chose surgical, because I wanted that thing out of me.

I walked everywhere that summer in Mammoth, always with a walking stick. My balance was beyond unpredictable.

I walked everywhere that summer in Mammoth, always with a walking stick. My balance was beyond unpredictable.

So the surgery lasted 11 hours; for more detail, see this post here.  I had a follow-up visit with my otologist at 9 months post-op – he said my recovery was going well but to keep up my walking and my balance practice, and he sent me to therapy.

That’s when I realized that the 3 to 6 months of recovery time was wrong.

For me, it’s taken a solid three years to recover, but I can finally say I’m good to go. My balance is good; the hearing in my right ear is gone, of course, having been taken out by going through the ear canal to perform the surgery – better than having my skull opened up! – but I’ve gotten used to being unable to easily echo-locate.

I’ve also gotten used to putting people on my left side, and reminding people if they’re on my deaf side that they might have to touch my arm to get my attention.

I didn’t go the “group” route when I was diagnosed; I’m not really that kind of person. But if you’re dealing with an acoustic neuroma, and if you ARE a group type person, there’s a good one called the Acoustic Neuroma Association. They have an interview with Mark Ruffalo, who also underwent surgery for an acoustic neuroma; his story is different from mine and totally fascinating.

I guess I just wanted to do a wrap-up, partly for me, partly for others out there who are undergoing the fear and fascination of having something growing in your head that doesn’t belong there. I do consider myself lucky. But the best part is, more surgeons are getting experience dealing with acoustic neuromas. More information is known. And more information is almost always better when dealing with someone mucking about in your cranium.

May all your days be blessed. Mine certainly have been. Oh – and Happy Anniversary to me. I think I deserve to celebrate.

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