My name
is Carol Botts and I have Chiari Malformation. I was
just diagnosed last October. I have always had headaches.
Growing up in the 60s and 70s, my mother never took
me to the doctor, she just gave me aspirin and sent
me to bed.
As I grew older,
I started having so many headaches that it was affecting
my daily life. I went to the doctor for the first
time for my headaches when I was 17 and was given
codeine with fiorinal. The medicine was effective
in helping the headache pain but after a short while
became addictive. I did not want to depend on a narcotic
to live my everyday life so I started taking another
medication that was not as effective but was non-narcotic.
When I entered
my 20s and married, I started having children and
changed my pain reliever to Tylenol. I relied on the
Tylenol to relieve the pain but was taking them almost
everyday for many years. As I entered my 40s and knew
that I was done having babies, I visited my family
doctor again and was given Toradol for emergency room
visits and Maxalt for times at home to manage pain.
I still took Tylenol when I could.
In the spring
of 2008, I started to have balance problems. Sometimes
I would tip over while standing still. Since I had
had cancer in 2007, I feared that I may have a tumor
in my brain. My family doctor was not so concerned
and sent me home telling to come back if the episodes
became more frequent. They did and I went back. He
sent me to a neurologist in October 2008. She sent
me for an MRI and I waited for the news in which I
was certain would be BAD but I was glad that someone
was doing something. I got the call while I was in
bed with the flu. My neurologist's assistant told
me that they had found an abnormality called Chiari
Malformation and asked me to come in the next day.
She briefly explained what it was, but since I had
never heard of it before I immediately jumped on the
computer and serched the internet. Finally, a reason
for my headaches! I felt through the years that my
friends and family had begun to think that I was playing
it up because certainly no one could possibly have
that many headaches. It was my normal. My neurologist
showed me my MRI and she explained everything to me
and sent me to a neurosurgeon in Iowa City. He did
some tests and did a spinal MRI to see if there was
a syrinx present. Thankfully, there was not. However,
it showed that I have a bulge of CSF at T12 of my
spine. I have developed terrible leg pain and wonder
if that is the cause. My neurologist has given me
Gabapentin for the pain. It seems to help a lot. I
am starting to experience dizziness in the last few
months which is another Chiari symptom. I have learned
to live my daily life with Chiari and hope that I
will never feel that I need decompression surgery
but I am glad that today's technology gives me that
option.
My husband is
very supportive and understands how this affects my
life. He is my hero. He jokingly calls by condition
KIWI BRAIN! :0)
