Jim,

Your experience is why I avoid hospitals at all costs. For some time, I've 
had progressively worrisome cardiac issues that will at some point require 
repair.

In the interim, I shall continue with 'managed care' (my own!) with a 
prescription that has worked well thus far - measured infusions of single 
malt 'medicine' :)

Years ago, I was treated in the ER by a doctor, who after poking me in the 
stomach while I sat in my wheelchair,diagnosed 'indigestion'. She then asked 
me what cerebral palsy is! I wasn't long leaving AMA and filing a complaint 
with the chief of ER Med Services, then calling my own doc at home who 
arranged further consults. I was later found to have Grade Two (two holes in 
the valve) Aortic Insufficiency. It is that GTAI which is 'seeming' to be 
the culprit with current problems, though I suspect that spinal stenosis has 
entered into the mix and is the prime mover of the ticker trouble.

As well, my father (a physician) on more than one occasion, told me to 
never, ever let a surgeon near my back, no matter what was/might be offered 
in terms of relief. Those words resound! Just a few days ago, I was met here 
at my home by an OT for a wheelchair fitting (I use a chair only for mall 
outings to reduce spine stress and combat fatigue). The OT commented that I 
had 'perfect' sitting posture. Again, it's something I work at in aid of 
ensuring that things don't get too far off track with regard to maintaining 
status quo.

Your experience, as horrendous as it was, must be a lesson to all of us as 
we age with cerebral palsy.

Wishing you steady recovery.

Best!

Carla
http://users.xplornet.com/~terrier
There is a destiny that makes us brothers; None goes his way alone; All that 
we send into the lives of others Comes back into our own [Edwin Markham]

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