Wednesday, April 01, 2015

Story 1. My Decision for Radiosurgery. (for the Acoustic Neuroma Association)

Brain tumor awareness month is coming up in May. The Acoustic Neuroma Association asked me along with others to recap my experiences in three parts: The first part is "How I arrived at a treatment decision."

My Decision for Radiosurgery

My husband was trying to tell me to move into a line in the customs area of the Denpasar, Bali airport. I could see his lips moving and his hands waving, but I couldn’t hear a word he was saying. My ears were buzzing, hissing, and a roaring sound was coming and going. We’d just gotten off the plane and I thought the ear noise (I’d rarely if ever heard the word “tinnitus”) would diminish. But it didn’t.

We were choosing materials for a house remodel in California and had a busy schedule meeting with designers and exporters. In the evenings, I would sit in our hotel room and cry with the frustration of suddenly being in a nightmarish surround-sound of chirping, screeching and whistling, unable to concentrate and wondering what was happening to me. My husband was bewildered but understanding. We made it through a torturous two weeks of me dazed and confused, repeatedly asking, “What?”; I hoped once we were back home, I’d improve. But the noises remained, and I realized the hearing in my left ear was diminished. I went to see my doctor who looked me over, listened to my symptoms and said, “You’re going to the ENT. It might be a viral condition or there’s a very slim chance it could be something called an acoustic neuroma.” I’m very thankful for having a personal physician who was familiar with the symptoms of an AN. Within two weeks of my first appointment, I had a diagnosis.

That diagnosis -  a .5 cm. acoustic neuroma was unsettling, but it was so much better news than all the nightmare scenarios I was fearing. I’d had several friends die horribly of malignant brain tumors, and my worst fear was of ending up the same way. Compared to malignant tumors, almost anywhere in the body, my benign and reputedly slow-growing AN meant I had plenty of time, many options for treatment and could expect to move forward in life with a future. As my otolaryngologist told me, “If you’re going to have a brain tumor, this is the best one to have.” I was pretty relieved and happy.

I was 66 years old and recently retired. I have always enjoyed research and attacked the Acoustic Neuroma Association website with a vengeance, reading about my options.  I concluded, as did my doctors, that the best approach for me would be watch and wait, given my age and the slow growth rate of AN’s. My hearing loss, at that point, was minor and I began reading about tinnitus and how to cope with it.

Six months later, I woke up with severe vertigo; I could only leave my bed by hanging onto the furniture, staggering from bed to the dresser to a door jamb. After two days of being barely able to move without triggering severe episodes of room-spinning, I was back having another MRI. The tumor had more than doubled, growing to 1.1 cm. This news was more shocking for me than my initial diagnosis. My doctors recommended I select a treatment as soon as possible. This path was not going to be as easy as I thought.

Once again, I practically lived on the Acoustic Neuroma Association patient forum which helped me conclude that radiosurgery was the way to go. The surgical options scared me when I read about the side-effects people experienced. I’m one of those lucky people who’ve never suffered headaches: I was afraid of triggering them and more. With radiosurgery, I could expect to stay the same as I was, except I did stand a roughly 30% chance of losing all of my hearing in my AN ear. At that point, my symptom line-up was -  some dizziness, wonky head, tinnitus and slight hearing loss. I was no longer in the workplace and lived on an avocado grove with my husband and two cats. The longer term effects of radiation treatment, if any, would not be an issue for me because of my age. I was willing to live with my symptoms, plus deafness in my left ear should that occur, rather than take the chance with conventional surgery of side-effects which could be worse.

Looking beyond the treatment, I anticipated undergoing vestibular therapy to decrease the dizziness and from what I read, people learned to live with tinnitus and wonky head. Should my hearing disappear, there were several hearing aid options or the possibility of implants I could pursue. I was satisfied that I could live the rest of my life with my dead tumor as a constant companion.

I was ready and moved forward, selecting Dr. Chang at Stanford for my procedure. Many people have already written about their experiences with radiosurgery; on the forum one can read excellent detailed accounts. My procedure progressed very easily. After two “prep” days, I had three treatments on three consecutive days of less than 45 minutes each, to deliver 18 grays of radiation to my tumor. Only mildly uncomfortable in the facial mask, it was fascinating lying on a gurney with “Cyberknife 1” moving up and down and around as opera music soared through the room. My husband and I had a great time in Palo Alto at Stanford, almost a vacation: I experienced a kind of euphoria after the first treatment. We went out for dinner every night, wandered around the town, window shopped, and felt very grateful that everything went so well. We got home on Friday night after the final treatment and Saturday morning I woke up early, full of energy, relieved to have the procedure over with and behind us. I spent the weekend in our almost completed house, painting cabinets while singing golden-oldies along with the radio; about as happy as I can ever remember being.

As anticipated, my tumor has been stable for over five years, and my outcome is just about as expected. I did lose all the hearing in my left ear. My other symptoms remain unchanged
and I’ve adapted to live with them, utilizing various coping mechanisms and strategies, many of which I’ve learned about as part of the ANA support group in San Diego.

IMG_0010 radiation.JPG
Bolted down and ready for Cyberknife1


  1. Cookie -- this is quite a journey and so glad you shared how you researched your decisions. I've had tinnitus for a few years now -- and simply live with it. I was surprised to find that vertigo was an occasional companion and that it was attributed to "stone-like" inner ear formations - or, literally, rocks in my head. Take good care -- and hope to see you and see some pictures of your fascinating travels.