Founding of the Acoustic Neuroma Association

If you haven't seen or heard Ginnie Fickel Ehr talk about her experience and how she founded the Acoustic Neuroma Association, you should watch this 8 minute video.

Ginnie was at the recent symposium in Los Angeles and celebrated her 84th birthday with the group.
What a woman!

Founder of the Acoustic Neuroma Association

Acoustic Neuroma Patient's Memoirs

Following are the titles and Amazon summaries of three memoirs written by Acoustic Neuroma patients. The fourth, "A Whole New Normal..." is not on Amazon but available on-line from Village Books in Seattle. 

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.

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.

A Whole New Normal..an acoustic  neuroma journey by Marla Bronstein

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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

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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.

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."

The social toll of hearing loss

 

 

News DeskFriday, August 02, 2013
From Print Edition

 

 

 

Straining to catch the gist of conversations is frustrating enough, but a new study shows that seniors with hearing loss are also at increased risk for hospitalization, illness, injury and depression.

Researchers analyzed data from more than 1,100 American men and women aged 70 and older with hearing loss, and found that over a four-year period they were 32 percent more likely to have been admitted to the hospital than more than 500 adults with normal hearing. Hearing-impaired seniors were also 36 percent more likely to have prolonged stretches (more than 10 days) of illness or injury and 57 percent more likely to have extended episodes (more than 10 days) of stress, depression or bad mood, according to the study, published online June 11 in the Journal of the American Medical Association.

“Hearing loss may have a profoundly detrimental effect on older people’s physical and mental well-being, and even health care resources,” said study senior investigator Dr. Frank Lin, an otologist and assistant professor at the Johns Hopkins University School of Medicine and Hopkins’ Bloomberg School of Public Health. “Our results underscore why hearing loss should not be considered an inconsequential part of aging, but an important issue for public health,” Lin said in a Hopkins news release.

Hearing deficits can lead to social isolation, which in turn contribute to physical and mental declines, Lin said. Hearing loss affects as many as 27 million Americans over age 50, including two-thirds of men and women aged 70 years and older, according to Lin. The study doesn’t prove that being hard of hearing directly leads to other health problems, but it does show an association between the two. And health policymakers need to consider the broader health impact of hearing loss when making decisions for older people, study lead investigator Dr. Dane Genther, a resident in otolaryngology/head and neck surgery, said in the news release. Genther’s recommendations: expanded Medicare and Medicaid reimbursement for hearing-related health care services, wider installation of hearing loops in various facilities, and more accessible and affordable approaches for treating hearing loss.

From the News International: 

Read more here