So on Monday we drove 3 hours to a
new doctor that specializes in Chari Brain
Malformations. Unfortunately he does not take our insurance so I had
to pay $900.00 out of pocket. Of course paying 900 dollars when you are not
working because you are sick is not so easy, but I have to get better. The good
news is, I could really tell this doctor cared and
understood just how sick I was and everything I have been going
through for the past 6 years. He took the time to review all my MRI's back to 2006 and explain to my husband
and I why I have been feeling so bad. Apparently I do have a Chari as well cervical spondoloysis which may also be the cause of my
balance problems, narcolepsy, and fibromyalgia.
My doctor explained
that it seems my brain is not processing
things the way it normally
would because everything
is being pushed together do to
this Chari.
He informed us I will
need 2 surgeries, one on
the brain and the second on my spine. So on
December 18th I have
another appointment (3 hours away with
no insurance coverage) so he can
review more detailed films
of my neck and brain, this way
he can make a decision on which
surgery to do first. He also
advised us he will make sure to go
over everything with us so
we can play a role in which surgery
I have first.
I am so tired of being sick and I am
really happy to find a doctor
that cares enough to try
surgery to correct these issues. However
having surgery on my brain and
spine when having surgery does not
guarantied I am going to feel better
is extremely scary. Not to
mention I have had several friends
who have had surgeries that have
had made them feel worse. To be
honest I am not sure how I would handle
feeling any worse than I do now.
Of course I am going to do whatever
the doctor advises me to do and just
hope for the best.
One thing is for sure, I have one of
the best husbands in the world. He has taken such good care of me over the
past couple years, I don't know how I
would have managed without him. More
to come after my next visit.
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