Saturday, August 13, 2011

Hot nights in Cincinnati

Cincinnati was hot and humid..a typical summer evening - throngs of people dressed in bright red t-shirts and hats walking to the downtown stadium for a Cardinals game. In the Hilton Hotel a couple of hundred people gathered for the Acoustic Neuroma Association meeting. Eh? What's that? Sorry I can't hear you? Could you speak louder? - these were the kind of comments floating in the air. As we waited for the elevator's arrival heralded by a ding,  all 12 people in the lobby started circling around, looking at the lights, having no idea where sound is coming from. Richard was the only person with sound localization and he shouted out, "Walk this way!!". We followed him like a line of chicks following their mother.

Over the weekend, we listened (ha) to lectures and presentations learning a lot. Surgeons, radiologists, epidemiologists, public health professionals and audiologists made presentations. Highlights of general interest from the causation front: childhood radiation is linked to development of brain tumors in adults, radiation from thyroid treatments in particular. There's a huge Israeli study on-going.  N. African children emigrating to Israel in the early fifties were irradiated to treat head lice..lots of data available for study. Smoking may protect against certain kinds of cancer, although nobody is suggesting you risk lung cancer for protection from other cancers. Another development is that is that people who have allergies have less cancer...they speculate that developments in the immune system might have something to do with it.

Just what everyone wants - plastic brains
Cruising the exhibits, we picked up a couple of plastic squeezable brains - I'm thinking of making them into giant earrings - and we saw demonstrations of surgical apparatus that was being sold to the physicians in attendance - cool new cutting, sawing, boring stuff for brain surgery that they demonstrated on a grapefruit, cutting the segments out carefully. Actually, I can do as well with my saw toothed, curved grapefruit cutter (ha). Because everyone has wonkiness and dizziness to some degree we bumped into each other frequently. It was pretty funny watching people veer off into walls or miss a doorway. When the whole community shares a problem like this, it is not longer the problem. The unaffected people are the ones who stick out like a sore thumb.

Met a few poor bastards with NF2...with this condition, tumors- usually benign, spring up everywhere. One fellow had nine in his brain and twenty or so on his spinal cord. These people have as much surgery as they can stand but eventually they are just overwhelmed and things stop working because the neural pathways (and other things) are crowded out by the tumors.

Many of the people attending were "watch and wait" - they have slow growing small tumors and the luxury of time. They can wait until the tumor starts causing symptoms or decides to bolt, like mine did, then get to decide between three kinds of micro-surgery and three or four kinds of radiation. Every procedure has advantages and disadvantages. There are constant improvements in the treatments. In the two years since I was irradiated they are apparently modifying dosage. I received 18 grays and now they are delivering closer to 14 grays during the same procedure. Obviously the lower the better.

It was encouraging to hear that there's hope on the horizon for tinnitus sufferers. Because tinnitus is in the brain - it's actually the brain creating noise to replace the stimulation of sound, the only thing that really works now is a kind of retraining where the brain is conditioned to ignore the sound. Interesting that tinnitus can take so many forms - some people just hear a whooshing, others clanging, others sirens - I have a whistle and a buzz and can mostly ignore it except when I can't.

tinnitus sounds


1 comment: