I have wrestled with this nonstop since I found this site.  I just want the new people who find this not to be afraid of what happened to Arianna.  I know that death is in the back of our minds all the time.
I want anyone who reads any of my posts or replies to understand that her left side was between 90% and 98% blocked.  We were in the process of diagnosing a genetic defect at the time of her death.
All of her symptoms and signs and strokes went undiagnosed for many years.  
This is a result of "falling thru the cracks".  Her symptoms were severe, yet no one wanted to do the necessary tests.   By the time we got to Dr. Scott, the damage had been done and surgery was her only option.  The risk was very high, but there was no other choice.
I just don't want anyone to freak out if I post that she had some of the same symptoms and problems that you suffer.  She is not the norm.  I didn't even know all of these wonderful physicians existed until I found this board.  I only knew of Dr. Scott.  
I just wanted to try to ease some of the fear my story might bring.
Peace to all.