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Faces of Chiari - Brooke
Brooke
was diagnosed with her Chiari in May of 2008. They found it coincidentally
when her neurologist was doing some initial testing because of her delays.
Prior to her decompression Brooke was a very unhappy little girl. She
would scream with headaches daily and because she is speech and language
impaired she couldn’t and still can’t tell us how she was feeling. When we
got the diagnosis we were overwhelmed like all parents who get this
diagnosis. You are never prepared for someone to tell you that you need to
take your daughter to a neurosurgeon.
After
meeting with neurosurgeons they all agreed that Brooke would be a good
candidate for decompression surgery. At the point of diagnosis her
herniation was between and 7-8mm. It took us some time to decide on which
neurosurgeon to go with but once we made that decision things seemed to
move rather quickly. Before the neurosurgeon would operate on Brooke she
ordered a number of tests to be done. Through the numerous tests we
learned that not only is Brooke Speech and Language impaired, she has the
Chiari, Hypotonia in her legs, Sleep Apnea and was diagnosed PDD-NOS.
(Pervasive Developmental Disorder – Not Otherwise specified. )
The
Neurosurgeon that we chose suggested doing a “Bony Decompression” because
it was less invasive for Brooke and she was concerned that Brooke would be
too upset after surgery and possibly cause a CSF leak. So Brooke underwent
the Bony Decompression on Halloween of 2008. She tolerated surgery well
and came home in three days. She began healing well however about two
months after surgery she began showing signs of symptoms reoccurring. So
three months post op she underwent her first post op MRI. The day after
the MRI I was faxed the results from the radiology department, that is
when I broke into tears. There in black and white it stated that now
Brooke’s herniation was to mid-C2 region approximately 10mm herniation
now. It was larger than what it was prior to surgery. All I can remember
thinking was how can this happen?
So we
felt it necessary to meet with two more different neurosurgeons to get
another opinion. And when we did we got the answer that we had feared.
Brooke would need a second surgery. This time a duraplasty, she would need
to have a patch put in. So on May 28, 2009 Brooke underwent her second
brain surgery and had a full duraplasty. We feel that she is healing very
well however we have learned now to be cautiously optimistic and await
eagerly her post op MRI.
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