Tuesday, December 07, 2010

Live with it

Recently, I spent a Saturday afternoon at an acoustic neuroma meeting in San Diego. Only 6 of us attended so I was really glad that I went. With such low attendance, the group could evaporate and that would be a pity.

Our speaker was a physician with credentials galore:  otologist, otolaryngologist, head and neck surgeon. He spoke about diagnosing AN's and about the advantages and disadvantages of surgery and radiation. He answered our questions about the latest research into the cause - (one single cell stops producing a tumor suppressing protein called Merlin - an acronym for something complicated but so fitting), tinnitus (no hope on the horizon), problems with processing information, single sided hearing loss, facial nerve damage, fatigue.  

All of us teeter and stagger and I find I am just about like everyone else in terms of adaptation. The bottom line for all the symptoms is: Live with it, adapt, get used to it. After trying a few things like ibuprofen or small dose of valium I believe this advice exactly right.

Years and years ago, I happened to watch a television program about visual adaptation. A study they presented involved having people wear glasses which inverted everything..in other words, turning the world upside down. I couldn't imagine that a person could cope with this but in a relatively short time...like one day, people were pouring tea into cups. The brain learned to invert the inverted images. The study fascinated me - little did I know that I would be challenged to adapt in a similar fashion. My brother-in-law has a kind of macular degeneration and has adapted to seeing the world out of the sides of his eyes only - no straight ahead vision. He even drives.

Yesterday evening I climbed a ladder and crawled into the attic to get down Christmas decorations. A few waves of vertigo but nothing serious. Last year I wouldn't have attempted this. While crawling around I whacked my head really hard on a beam and I felt nothing. I kept waiting for the pain but apparently whatever nerves transmit that message aren't doing their job. Good deal - I have something new for the resume.  A job in a circus/county fair where people throw pies at your head?


  1. I'm getting my pie ready for the next time I see you.

    It's a great philosophy- "live with it". But I'm sorry you have to live with what you have to live with.

    Did you notice you had a visitor from Kota Kinabalu Sabah? I wonder where that is and how they happened upon your blog.

  2. I wonder too about those visitors, but usually it's someone who comes for 1 minutes, probably by accident. Make it a soft pie for the first trial.

    Happy Holidays.

  3. I look forward to meeting you one day. You said that you would drop in, didn't you?

    I always thought it would be neat to walk on the ceiling...I am not familiar with acoustic neuroma but will read up. I lost my equilibrium once and it was a night of terror. I had to stop scuba because I was losing my balance about an hour after my deep dives.

    Love your writing.

  4. Yes Robert - I'm looking forward to meeting you too. Your blog is positively addictive. I'm such a fan.