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UPDATE: 08/10/06
Bryson had his Chiari Decompression
surgery on March 29th of this year, and we are happy to say that
things have improved dramatically! Though the doctors had told us
before the operation that some of Bryson's worst problems were not
related to the Chiari, it has now been shown that they actually
were. The short-term memory loss issues are gone now. His moderate
hearing loss and the ringing in his ears had changed - the ringing
is gone, and the hearing loss is down to a very manageable mild
level. What we had previously thought was ADD was apparently
something to do with the pressure, because since his operation he
has been able to function on a fairly normal level - he no longer
loses focus, forgets what he's supposed to be doing, etc. He does
still have some learning disabilities that he will always have -
mild dyslexia and a condition known as Irlen Syndrome which affects
the way his mind comprehends what he is reading under normal
lighting conditions. But he is learning to deal with the dyslexia,
and a colored glare-reducing laminate sheet placed over his reading
material corrects the Irlen Syndrome so that his brain can focus on
the words and not the glare.
One of the most unexpected things is
that Bryson will actually be starting 8th grade in another 2 weeks!
We had suspected that he would miss so much school, and that he was
already so far behind, that he'd never be able to pass 7th grade.
But, Bryson healed from the surgery faster than expected, and once
back at school, he kicked it into high gear and managed to not only
complete all of the current work, but also all of the missed
assignments, and he passed!!!
Bryson is doing very well since his
operation - both physically and mentally. He continues to be a
wonderful young man, and we are so proud of him!
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February 28th, 2006 - UPDATE -
It has been close to a year since I originally wrote Bryson's
story, so I wanted to update a few things. Last September,
Bryson was diagnosed with Chiari Malformation, Type I. This is
a condition in which the cerebellar tonsil portion of the brain
has gotten pushed down into an area it is not supposed to be in,
and is, in effect, being squeezed. It has also caused a
syringomelia (pocket of fluid) to form on his spinal column. He
will be having a Chiari Decompression surgery on March 27th,
2006, in which his neurosurgeon will remove a portion of the
posterior base of his skull, and part of a vertebrae in his
spine, to allow room for the cerebellar tonsils, and to allow
the fluid to drain. Luckily, Bryson's Chiari Malformation was
found by accident during a routine (for him) CT scan. I say
'luckily' for two reasons - 1) it needed to be found, and 2) I'd
rather it be found by accident than because he was having
problems and they had to go looking for a cause. There are
quite a few different symptoms, and he's been lucky enough to
not have any of the worst ones, because it was found early
enough.
Unfortunately, over the past few months, his learning
disabilities have gotten drastically worse. We do not know the
cause, though are hoping that perhaps there is some connection
between this and the Chiari...if so, perhaps this operation will
help that, too. If not, he will be having full testing through
school to determine exactly what his disabilities are, and what
the best course of action is, to help him learn. After trying
several different ADD medications, he is now going without
medication for that issue. None of them agreed with his system,
and one actually put him in the emergency room, so we decided it
was time to stop testing them! He will be repeating 7th grade
next year, because of the learning problems and his upcoming
surgery (he will miss 4 weeks or more of school), but in a way
he's actually looking forward to getting a 2nd chance at school
and being ahead of the game for next year.
Through all of this, Bryson remains a wonderful young man! He
is now 13 & 1/2 years old, and looking forward to summer
vacation. He has a lot of friends, and (in normal teenage
fashion) loves to talk on the phone. He continues to enjoy most
of the things he liked last year, though occasionally exchanges
one love for another when it comes to sports. Right now he is
back to loving basketball, after a few months of liking football
more. He continues to make us laugh, and to teach us - though
don't let him know that, or he'll start thinking he's in charge!
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