My acoustic neuroma greeted me with a bang. I was commuting home from work on the train one early evening when I was hit with a huge case of vertigo. How I got home that night is a miracle.
You know the rest – the ENT, audiologist, MRI and back to the ENT for the diagnosis. I quickly found ANA on the internet, and began to build a support system (without actually realizing it at the time).
Since I had a small, 4mm tumor, I decided to wait and watch. The first 18 months or so were a nightmare. I began to have severe headaches every day. My quality of life was terrible, and I began to withdraw from much of my personal life as I just wanted to sit home. I couldn’t function normally with the headaches.
I decided I would leverage all the information I was getting and people I was meeting from my ANA contacts – the Willing to Talk List, my local ANA/NJ support group and the ANA symposium, and select three experienced doctors to try to understand why my very small AN was giving me such terrible headaches. Maybe despite the tiny size of my tumor I’d get surgery anyway.
With the help of all my ANA contacts, I was fortunate to identify and visit three terrific doctors I could have confidence in. Selecting and visiting them was a major undertaking, but after a year or more of terrible headaches the mission was worth the effort. I had no choice!
From these doctors I learned my headaches had nothing to do with my AN, but were in fact an allergic reaction to the high blood pressure medication I had started taking at about the same time as my diagnosis. (The culprit was a compound called amlodipine.) I changed medication and the headaches vanished immediately!
It hasn’t all been smooth sailing since, but the bouts of vertigo have diminished, and the balance challenges have been manageable. I feel very indebted to ANA. They enabled me to cope with a really difficult situation – both physically and mentally. Their programs and services made all the difference in the world.
It is for this reason that I joined the ANA Board of Directors, contribute to their fundraising every year and have made a bequest to ANA in my will. Without ANA I certainly would not have been able to cope so successfully with my circumstances.