Acoustic Neuroma? What the heck?

(The image above is “Patient Girl,” by LA artists, the Clayton Brothers. Experience more of their work at Print Magazine or their website. Used with permission.)

This is AN Awareness Week, part of Brain Tumor Awareness Month, so I wanted to share a few facts about that little stowaway inside my head. First, an acoustic neuroma (AN) is a tumor of the ear/brain/balance/facial nerves. Here’s what a small one looks like:

Photo from Mayfield Clinic

Mine was the size of a golf ball when we found it. Here’s a drawing approximating it inside the brain. (It was actually bigger, but I want you to see the labels).

Acoustic Neuroma in red

I’ve marked with red the actual tumor and circled or labelled in red the most affected areas: the vestibulococochlear (balance/hearing) nerves, the facial nerve, the trigeminal (eye control among other things) nerve and the brain stem.

My AN tumor was mostly removed with my left-side balance/hearing nerves in a surgery 3 years ago. Like many patients, I retained a small piece of AN in order to save my facial nerve. Without it, I would have no control of the muscles on that side if my face and the drooped appearance of a stroke patient. I am forever grateful to my surgeon for removing the tumor so skillfully.

Non-malignant doesn’t mean harmless

Like most ANs, mine was not cancerous, but that doesn’t mean I don’t have serious, ongoing issues.

One-sided hearing: Like most patients with a large AN, I lost all hearing on that side. The actual hardware for hearing had to be removed to remove most of the tumor.

Loss of direction from sound: Because I have only one ear, I cannot tell where a sound is coming from. That means if you call my name, I cannot tell where you are. If I hear a bus or bullet, I have no idea which way to turn.

Ringing in my ear: Like 60% of AN survivors, I hear a roaring/rushing/ringing sound in my affected ear. Some days it’s soft and doesn’t bother me. Other days it ROARS and even though my other ear hears well, I can hardly hear over the noise.

Vertigo: Like 40% of AN survivors, I have ongoing issues with vertigo. Imagine waking up and not knowing which way is up. Imagine turning a corner and everything starts spinning for a moment. Mine is minimal now but varies. That can change at any time.

Headaches, big ones:  My brain feels like it’s exploding regularly, like maybe four times a week.  Sometimes it’s accompanied by what I call a “brain reset.”  It feels like everything shut down instantaneously, then starts back up but I have to start rethinking where I was.  Luckily the brain resets are rare now after three years.

Balance issues: My balance is one-sided. I have done therapy and yoga (hilarious, believe me!) to improve it. I will never have great balance again as I lost 1/2 of my body’s balance apparatus, but I can keep improving it.

Little things:  Like my left eye cries uncontrollably when I exercise now.  It didn’t used to.  I suddenly have trouble doing one particular exercise while counting out loud.  No big deal. There are a myriad of small things that have changed forever. One was depression, but luckily I am like the world’s biggest optimist so have been able to fight that off.  Others not so much.  Here’s a complete list from an AN patient study:

My Stowaway

But the biggest issue I face like many folks is the presence of a teeny bit of tumor inside my head, wrapped around my facial nerve. What does that mean? I recently experienced a sudden upturn of vertigo, headaches and much-louder tinnitus only to find my tumor had grown slightly. It is not operable at this point. And the problems are minor compared to having another brain surgery.

For more information, contact the Acoustic Neuroma Association:

For more about my experience, visit this page.  I don’t link to it except on the “About Me” page of this site normally,

because it is a part of me,

but I won’t let it define me. 

PS:  I’m editing at the moment so may not post again for a week or three.