Monday, September 23, 2013

Diagnosis in a Dream

Mark Ruffalo is among those of us afflicted with an acoustic neuroma.

Here's an interview with him about his unusual experience.  He dreamed he had a brain tumor and it turned out he did! Read about it here:

Interview with Mark

Bionic Ear

Caption: Scientists This "bionic ear" is capable of receiving radio signals. Photo by Frank Wojciechowski
This “bionic ear” invented in a lab at Princeton University is capable of receiving radio signals.                                                            Frank Wojciechowski photo 

PRINCETON, NJ—Blending electronics and biology, scientists at Princeton University have used readily available 3D printing tools to create a functioning “bionic ear” that can detect radio frequencies far beyond the range of normal human capability.
In a May 1 news release, John Sullivan of the Office of Engineering Communication at Princeton reported that the primary purpose of the researchers was to develop an effective means of merging electronics with biological tissue. The scientists used 3D printing of cells and nanoparticles followed by cell culture to combine a small coil antenna with cartilage, creating what they termed a bionic ear.
The lead researcher is Michael McAlpine, an assistant professor of mechanical and aerospace engineering at Princeton. He told Sullivan, “There are mechanical and thermal challenges with interfacing electronic materials with biological materials. However, our work suggests a new approach–to build and grow the biology up with the electronics synergistically and in a 3D interwoven format.”
The Princeton team has been doing research in cybernetics for several years. This promising field seeks to design bionic organs and devices to enhance human abilities. The bionic ear project was the first effort by McAlpine and colleagues to create a fully functional organ: one that replicates a human ability and then uses embedded electronics to extend it.
Writing in the journal Nano Letters, the scientists said that cybernetics, “has the potential to generate customized replacement parts for the human body, or even create organs containing capabilities beyond what human biology ordinarily provides.”
In order to replicate complex three-dimensional biological structures, the researchers turned to 3D printing. A 3D printer uses computer-assisted design to conceive of objects as arrays of thin slices. It then deposits layers of materials to build up a finished product.
One example of this approach is CAMISHA (computer-aided-manufacturing-for-individual-shells-for-hearing-aids), which was invented by Soren Westermann at Widex, and is now used to build 95% of custom hearing aids.
According to Princeton, the bionic ear project marked the first time that researchers have demonstrated that 3D printing is a convenient strategy to interweave tissue with electronics. The researchers used an ordinary 3D printer to combine a matrix of hydrogel and calf cells with silver nanoparticles that form an antenna. The calf cells later develop into cartilage.
The initial device developed by McAlpine and colleagues detects radio waves, but the team plans to incorporate other materials that would enable it to hear acoustic sounds. While it will take much more work to develop a bionic ear that could restore or enhance human hearing, McAlpine said that in principle it should be possible to do so.
The team that developed the bionic ear consists of six Princeton faculty members, two graduate students from Princeton and Johns Hopkins University, and Ziwen Jiang, a high school student at the Peddie School in Hightstown, NJ. McAlpine said of the precocious teenager, “We would not have been able to complete this project without him, particularly in his skill at mastering CAD designs of the bionic ears.”

Saturday, August 17, 2013

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

Wednesday, August 7, 2013

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 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.

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."

Friday, August 2, 2013

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: 


Tuesday, July 30, 2013

Cyclist Rides to Advance Acoustic Neuroma Research

Endurance Cyclist Prepares to Ride 466 Miles to Advance Neural Tumor Research

Released: 7/22/2013 6:00 AM EDT
Source Newsroom: House Research Institute
Newswise — Los Angeles, Calif. – July 19, 2013 – Steve Meichtry is one of the rare breeds of extreme athletes who enjoys testing the outer limits of distance endurance. When he discovered that he had an acoustic neuroma - a tumor on his left balance nerve that leads to the brain- he thought his cycling days were over.
What – After Steve Meichtry was successfully treated for his acoustic neuroma by Neurotologist Derald E. Brackmann, M.D., of the House Clinic and House Research Institute, Steve wanted to help others with acoustic neuromas by raising support for neural tumor research at the non-profit House Research Institute in Los Angeles, CA. To accomplish his goals, he is taking on his toughest endurance ride yet by entering the Inyo Ultra 466, a new 466-mile ultra endurance bike race in the High Sierra.
When – Right away, people can follow and support Steve as he trains for the
August 14th Inyo Ultra 466 race at
His training blog can be found at
Where –The Inyo Ultra 466 Race is a mind- and muscle-bending 466-mile course through the steep Eastern Sierra mountains northwest of Bishop, CA!
Race route info. is at
Steve resides and trains in So. California’s San Fernando Valley.
About House Research Institute –
House Research Institute is a non-profit 501(c)(3) organization dedicated to improving the quality of life for people with hearing loss and related disorders through scientific research, patient care and the sharing of knowledge. For more information about the House Research Institute, please call (800) 388-8612 or (213) 483-4431, or
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Friday, July 26, 2013


We are getting ready for the big ANA symposium being held August 9 - 11th, almost in our own back yard this year. The program is excellent and the event is a must attend for anyone with an acoustic neuroma.

Find out more here:
Acoustic Neuroma Association Symposium

Test Post

San Diego Support Group

This is a test post for the blog. We have plans to post stories of individual's experiences during their AN diagnoses, treatments and recoveries. If you read this, please post in the appropriate spot at the bottom of the blog so we know you have visited.

Thank you.