To Fellow Brain Tumor Warriors,
Surgeons removed a 1″ acoustic neuroma from my ear/brain in May of 2013. Because it was pressing into both my brain stem and my brain itself, we had to move fast. I had little time to think about the process or risks. Online testimonials from other patients were a huge help. Like those who helped me, I’m sharing as many details about the experience as possible. Wishing you clarity with your decisions.
PS: This listing is not really intended for casual readers, but for those facing tough decisions.
Symptoms: Vertigo, Tinnitus and loss of hearing in one ear
November 2012: I began to experience severe vertigo. A sound called “tinnitus” constantly played in my left ear. People like to call it a “ringing” but mine mostly sounded like rushing water. I was unable to sit/stand when congested, couldn’t tell which way was up. Primary doctor diagnosed Meniere’s Disease, a common misdiagnosis. This incurable disease of the inner ear nerve center attacks hearing and balance.
My first book had just been released and the disease wasn’t going anywhere, so I delayed any treatment until after my book tour, then the holidays. I kept the situation private except to my family and colleagues at work.
Misdiagnosis and delay
January 2013: I lost the remainder of my left-side hearing; Vertigo became a more dominant issue. It began to affect my work and my ability to drive. After consulting my primary doctor, I made an appointment with a local ear specialist — I would have to wait over a month for that appt.
Click to read my Blog post from Feb. 2013, “A Silver Lining”
February 2013: Rude office staff combined with the slowness of appointments led me to decide against that local doctor. I am grateful to this day that the nurse was so offensive. Thinking I was facing a lifetime disease,I decided I would need a doctor who was accessible and up on the latest treatments with staff that seemed to care.
The “colour” of MRI
March 2013: My first appt. with Dr Baker at Hough Ear Institute. Thanks to my primary doctor, I only had to wait a few days. Dr.Baker immediately sensed something “different” about my “Meniere’s” symptoms. The “colour” wasn’t quite right. He ordered a brain MRI–and I am terrified of small spaces.
April 2013: I learned only as it began that a brain MRI is different. It involved a helmet and breast plate that made it impossible to move and difficult to breathe deeply. After attempting the scan without a sedative, I gave in to taking valium which allowed me to lay perfectly still for the required 50 minutes.
Meet the Tumor and Its Remover
April 2013: Dr Baker diagnosed the acoustic neuroma. He showed me the 1″ diameter tumor and explained my options. Because of the speed at which my tumor had begun to affect my daily functions, we feared that it was growing unusually fast. He took me to his associate, Dr. McGee, the same day to evaluate me for surgery.
Under the Knife and the Brain Resets
May 2013: My acoustic neuroma was removed in an 8-hour+ surgery. With it, they removed my left hearing and balance nerves. To preserve my facial nerve, so I wouldn’t have the drooped face of a stroke patient, the doctor actually cut into the neuoma and took out small slices from the inside, one at a time. Thanks to Dr. McGee’s skill, my facial nerve was preserved. A 3-day hospital stay was followed by two months of recuperation at home. R
I began to experience many strange sensations, one I call “brain reset.” Like a wave of strange energy washing through my nervous system, it brings a momentary feeling of falling followed by some pain, not horrible pain. I can’t seem to think during the reset but it takes only a moment.
July 2013: Returned to work part-time. Some light vertigo mainly related to the removal of my balance nerve–quite expected. As I increased my work hours, I found that my brain felt overloaded. More “resets” occurred if I felt overloaded. So I cut my work hours back again.
August 2013: Began to feel stronger, more able to function. Almost all vertigo gone. Here’s blog post from this period.
Brain sensations and resets occur more often–along with the fear that one of my “resets” won’t reset. That it could be a stroke. Met with my surgeon who referred me to a neuro-specialist. Takes a long time to get in to see this super-doc, but I hear he is worth it.
The Dark Times
Not every day is great. In fact, one of the things I wanted to share is that it is perfectly normal to feel sad sometimes. This is the brain we are talking about. For my part, I am helped through the rough times by my family, friends and by the very act of writing.
Every morning I wake up feeling grateful for the one gift the tumor gave me: the fact that I CAN wake up feeling grateful. I woke up!
An inspiring story in video:
In March 2014, my pre-surgery symptoms returned: vertigo, tinnitus, dizziness. Quite frustrating. Due to terrible storms and doctor schedules, it took almost a month to get in to see my surgeon and neurologist. They gave me so many balance tests and an MRI.
We found that the surgical area was leaking air and tiny amounts of blood into my brain. Thanks to Dr. Warner in OKC who tried a couple of different things to get it under control. Now, without taking heavy drugs, I can function fully again.
Here’s a post from the first time I wrote fiction again:
And I am grateful. Here’s my latest post about not settling for less than full recovery:
No recovery is perfect. I have ongoing issues with tinnitus and one-sided hearing. My balance is improving with yoga, but if you want a laugh, just watch me doing yoga, falling down every once in a while. Struggling to get into poses I once did easily.
One thing I will share about one-sided hearing: yes, my other ear is awesome now. It hears great, but my deaf ear sounds like a constant waterfall in my head. Most of the time, the sound is quite soft, but on those unpredictable days when it is loud, I can barely hear over it. And apparently little can be done.
Also, brain surgery and recovery is terribly difficult on families. Here’s my latest post on that:
PS: There are many posts in the blog about my experience and I will provide more direct links as I have time. If you are facing this tumor, I wish you the very best treatment. Go to the following site for much more info: