It’s Acoustic Neuroma Awareness Week

Acoustic neuromas seem to want to feature into my extended family. If you’re one of my regular readers, you’ve likely heard the story of my sister and her acoustic neuroma, but a different sister found herself with an extra chapter to the story. Two years ago, she and her husband had an appointment with an ENT specialist following up on his own symptoms (headache, ringing in the ear). An MRI had been performed and the doctor now told the two of them, “What he has here is a rare condition, affecting 1 in 100,000, known as an acoustic neuroma. Now, what an acoustic neuroma is…”

“… is a slow-growing, benign tumor, located on the eighth cranial nerve,” my sister finished for him. “Yes,” she added, noting his surprise, “our family knows all about acoustic neuromas. My sister had one removed six years ago.”

So. You add two family members and my beloved character, Dena, from my novel Outside the Limelight to the equation, along with the fact that I’ve pledged to donate 10% of the proceeds for Outside the Limelight to the Acoustic Neuroma Association, and that’s why it seemed important to pause the button on musings about classical music and ballet to give the condition and the association a shout-out this week. Happy Acoustic Neuroma Awareness week to all of you!

What is an acoustic neuroma? Also known as a vestibular schwannoma, it’s a benign tumor that arises on the eighth cranial nerve leading from the brain stem to the inner ear. This nerve has two distinct parts, one part associated with transmitting sound and the other with sending balance information to the brain. The eighth cranial nerve and the facial (and/or seventh) cranial nerve lie adjacent to each other; they pass through a bony canal called the internal auditory canal. It is generally here that acoustic neuromas originate, from the sheath surrounding the eighth nerve. When they grow large, they press against the brain stem, which gets dangerous, as you might have guessed. Acoustic neuroma patients often deal with post-op issues that reflect the state of these compromised nerves: hearing can be compromised or destroyed on the tumor side. Patients can experience different levels of one-sided facial paralysis, as well, based on the condition of the facial nerve, and whether or not it has to be clipped during the extraction surgery.

I lived vicariously in the world of the acoustic neuroma patient for three years while writing and revising my novel, Outside the Limelight. I frequented the Acoustic Neuroma Association’s invaluable discussion board, which is an amazing place, a source of not just information but powerful stories of both struggle and success. Check it out HERE — you will learn so much and have the opportunity to hear the stories of real-life heroes and survivors.

To help celebrate Acoustic Neuroma Awareness Week and increase the opportunity for more people to learn about acoustic neuromas and how they impact a person’s life, Outside the Limelight will be free from Wed, May 10 through Friday, May 12 HERE. It’s Book 2 of a series, and, while easily read on its own, I’ve discounted Book 1 of the Ballet Theatre Chronicles, Off Balance, to 99 cents for the month of May, if you’d prefer to start there.  You can find that book HERE.

Want to hear others’ stories about acoustic neuromas? HERE is a great blog from writer Lucie Smoker, an acoustic neuroma survivor. And actress and fashion designer Tara Subkoff tells her story for Harper’s Bazaar HERE.

Today, and all week long, I will lift my hat to all of you who’ve had to deal with this rare and challenging condition. You are warriors, survivors and heroes, each and every one of you.

 

Me and my sisters. Orange Classical Girl next to white-shirt, acoustic neuroma survivor, Maureen.

May 7-13, 2017 marks the fifth annual ANAwareness Week hosted by the Acoustic Neuroma Association®(ANA). ANA invites you to raise awareness of acoustic neuroma and the challenges facing acoustic neuroma patients, their family members and caregivers while recognizing their accomplishments. Visit www.ANAUSA.org and follow them on Facebook.

2 thoughts on “It’s Acoustic Neuroma Awareness Week

  1. Annette

    Thank you for this, Terez. Interestingly, May is also National Mental Health Awareness month. Seeing as acoustic neuroma patients experience a high incidence of post op depression due to chronic tinnitus and other side effects, it’s natural that the two would go together.

    Thanks for being a voice to a “rare” and beloved population.

    Reply
  2. admin Post author

    Always appreciate your comments, Annette! Interesting that May is also National Mental Health Awareness month – didn’t realize that!

    Reply

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