Wednesday, August 07, 2013

Acoustic Neuroma Memoirs

I'm getting ready to attend a symposium in L.A for the Acoustic Neuroma Association. One of the attendees just self-published a book on her experiences with one of these tumors  like mine. Doing a search I was surprised to find a three more such memoirs - I've listed them below with the short Amazon descriptions - not that they'd be of great interest for anybody but a fellow tumor-owner, but for my own record.  For a rare tumor, seems like more than you'd expect. 

1. Diagnosis: Brain  Tumor: My Acoustic Neuroma Story by C Micheal Miller:

Since I wasn’t allowed to move my head or upper body at all, I was watching my toes wiggle a little dance in my sneakers while I sang, in my head, the song that the Typewriter Guy used to sing on Sesame Street. Nooooney, Noooney, Nooney, Noo... T. Toes. I chuckled a little. I was in the middle of getting a cranial MRI scan and was watching my toes do their little dance in my sneakers in the angled mirror that I think was supposed to make me feel less claustrophobic. I just thought it was handy for keeping an eye on my toes while they wiggled and danced to the song I sang in my head. I’m guessing that’s not what the company who designed the MRI machine really had in mind, but I wasn’t worried about it. A sudden movement in the smoked glass window beyond my feet caught my eye. The silhouette in the control room was pointing and gesturing at something. There were quickly other shadows that came over to gather around and see what had attracted the first silhouette’s attention. My song faded off into nothing and my toes stopped dancing as the profile of a man wearing a tie came into view and started pointing and gesturing as well. This can’t be good, I thought. Pointing and gesturing during medical tests like an MRI is generally bad, even if it’s just pointing done by silhouettes and shadows. Little did I know what the future held in store for me.

2. An Acoustic What? One Patient's Acoustic Neuroma Journey by Yvonne Tommis

Just how did an uncontroversial and mild mannered piano teacher become the first UK patient to cross the Atlantic to be treated by Dr Gil Lederman using Fractionated Stereotactic Radiosurgery? The journey began in 1995 when I was diagnosed with a benign brain tumour; an acoustic neuroma. At the time I was advised to have it removed surgically; a long and complicated procedure with serious side effects. So I searched for a less intrusive treatment. It was a very lonely and difficult journey as friends and family wanted me to follow medical advice and have surgery. It took two years to find the treatment, during which time I was denied information, given misleading information and given false information. This book tells the medical and personal story. I hope it will help those who are facing difficult medical decisions, and their friends and family.

3. A Whole New acoustic  neuroma journey by Marla Bronstein

When I was first diagnosed with an Acoustic Neuroma, I went straight to the internet. I found out what it was, treatment options, and read personal stories of resulting complications from long, frightening surgery. I wanted a map to help guide me through the months ahead of surgery that might show me a light at the end of the tunnel with a happy ending. I don't think anyone will read this and come away with “the answer” to all of the questions that arise when deciding how to treat an acoustic neuroma. I hope my story will help people find their own path in dealing with any life-threatening/changing situation.

About the Author

Marla makes her home in the Pacific Northwest. She lives in Bellingham, Washington with her husband Ken. Her favorite children are Zoe and Caleb. She is still trying to figure out what she wants to do when she grows up.

4. Hell in the Head: My War with a Brain Tumor and Other Evil Things 
 by David Douglas Shannon

He got sucker-punched, blindsided with something that only happens to other people. Actor David Shannon had a brain tumor. It was called an Acoustic Neuroma. In late 2007, he had surgery to have it removed. All should have gone well. It didn't. Gradually over the next two years, Shannon made one disturbing discovery after another that left his acting career and his former life in ruin. Hell in the Head is his story. With a knack for story-telling, Shannon takes us along on his medical misadventure with irreverent wit. As he weaves his way through his newly found post-surgery world, he shares heart-rending losses and his dashed hopes for recovery as well as stories of achievement and inspiration. From learning the bitter truth to running a half marathon to meeting Crooked smile and others facing the same ordeal, Shannon tells the good and the ugly with the same wry humor that will have you laughing and crying at the same time. In the end, after a three-year-ride on a roller coaster of emotional chaos, he presents an advocacy for improved care and counseling for Acoustic Neuroma patients. Hell in the Head is a story of wit and inspiration for all readers and a must read for Acoustic Neuroma patients and "posties."

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