Symptoms of an acoustic neuroma (a sensation of fullness in the right ear, some annoying dizziness) began for me in 1989, but it wasn’t until 1998 that I had my first MRI. That’s when my 1 cm tumor got diagnosed. I’ve been Wait-and-Watch since then for 23 years, or even 32 years if you date back to first symptoms. In 2001 I was interviewed for the ANA/NJ Newsletter by Kristin Ingersoll, and that great memory is still available to read on the website. For this brief postscript, I’d like to add a few updates and some more recent reflections about my experience.
It's incredible to think that this accomplished man has navigated the roadblocks he has to get where he is today. Anyone would be proud to be a CPCU and Vice President at a major insurance company at the age of 45, with a lovely wife and two fine sons. To have gotten there despite incredible barriers is a testament to the human spirit and to the will to carry on and seize opportunity where others would find only defeat. This is Bob's story.
Loyalty to family, friends and place are strong threads woven through Victor Mankoski’s life. He lives close to where he grew up, has been married for 34 years to a woman he has known since kindergarten and maintains friendships that go back even further. Victor and his wife Linda were in the same high school class, had many of the same friends and will soon attend their 45th year HS reunion together....
My story began in 1993 while at a pediatric ENT appointment with my daughter. I mentioned I’d had mild ringing in my left ear for a couple of years, and the doctor tested me. A very slight hearing loss was detected and he advised yearly exams. For some reason, I kept that report but didn’t have more hearing tests. I had young children, was working, and I was “BUSY”.
Karyn grew up in New Jersey but moved south, first to Florida, then on to Texas, to pursue her education. From High School on, she was plagued with headaches, visiting numerous doctors with varying diagnoses, tests and treatments. She even had two CT scans in those early years, both of which were negative. Despite the pain, Karyn went on to pursue a nursing degree specializing in respiratory therapy, at Texas Medical Center.
It was the night before she was to enter the hospital for brain surgery, in early 1993. She was alone and frightened. Her mother had just died unexpectedly and she did not want to burden her four grown children with her fears. She remembered a letter she’d read in an ANA/USA newsletter and picked up the phone. The voice at the other end was an AN surgery survivor in Chicago, and to this day Wilma doesn’t know who she was, but this stranger gave her the hope and courage to carry on.
Imagine what it must be like for someone whose life and livelihood is music and the performing arts to be told she has an acoustic tumor. To make matters worse, her first doctor went on to tell Jane that if she didn’t have surgery to remove her 8 mm tumor as soon as possible, she could die!
Phyllis met her husband at the age of 22 and was married four months later. It is apparent that although he died 23 years ago, she still feels the loss profoundly today. She was only 38 years old when he died of primary brain cancer, and she was left alone to raise their two children, June and Paul, then 14 and 12 years old. Somehow between teaching school and tutoring, she not only supported them but saw that they got through college...
Nancy wants to use her medical expertise to open doors for others to follow her through. Her knowledge of the medical insurance industry and terminology has allowed her to push the coverage envelope, getting full coverage for her BAHA surgery and instrument. The road to that place was a difficult one but Nancy has barely allowed it to slow her down although she acknowledges a change of priorities.
The bottom line is that being deaf is hard and it’s tiring. If it wasn’t for a wonderful, supportive, close knit family, Cindy wouldn’t have overcome so much. She had a close family growing up and her Mom is her best friend. She has a supportive husband and two grown children now and throughout her ordeal they held her together.
Harry Springfield was diagnosed with an Acoustic Neuroma in March, 2000. He was fortunate to have been diagnosed fairly early once he started having symptoms in his left ear. His primary physician, after listening to Harry describe his loss of hearing, immediately suggested an MRI to rule out a tumor. However, as Harry was surprised to learn, the problem was a tumor an acoustic neuroma, approximately 2.5 cm
It was a proud moment in January of 2001 when Jodie graduated from computer school as class valedictorian and was selected to give the speech. A year earlier she had been so crippled by indescribable headache pain that she had to be hospitalized for five days to try to find a treatment regimen that would allow her to live her life. It has been a long road to where she is now and she tells us her story so that someone else "will see the light at the end of the tunnel."
When Phil Stern speaks of his family, his love for and appreciation of them is palpable. He is profoundly grateful for the love, patience and support he has always received from them. He says that if there is a silver lining in all that he has gone through since his diagnosis with a 2 cm acoustic neuroma, it is that it was the catalyst for him to start his own law practice. This has given him the freedom to make his family his priority.
Kathy can’t wait to turn on her cochlear implant when she wakes up in the morning. Attaching the speech processor portion to the implant opens up the world to her. Until that time she is in a silent world devoid of the sounds others take for granted like the birds chirping, rain on the roof, or even the sound of her alarm clock. In a few short years her world has changed in mysterious and sometimes frightening ways. It has been a challenging journey requiring her to redefine her priorities.