A
new blog for a new chapter.
Chiari
Malformation... Such a strange diagnosis and so many questions. So I
will start off in the beginning, about two years ago.
I
was working in a group home for individuals with developmental
disabilities. I had been in this line of work for about 6 years. The
basement in the house had flooded several times and have leaking
plumbing for waste. I began getting migraines at about 2 a week or
so. I blamed these on the fact that there was probably mold growing
in the basement. We, at the time, were staying in the basement of my
in-laws which was also damp with mildew and some mold. One Saturday,
I was doing some deep cleaning and moving furniture to clean the
backs of and under them. Immediately after moving the dresser, I got
this really sharp headache. It only lasted a few seconds and went
away. This began happening randomly when I strained, probably once a
day.
I
did see my family doctor about the headaches and migraines. She did
an MRI. We tried a preventative medication-Topimax. It worked for a
very short while and I was up to 4 pills/day and started getting the
tingly nose and fingers, so that was the end of that. She prescribed
Imitrex for the migraines. The MRI was read and came back as normal
with the exception of mild sinusitis. The headaches continued as did
the migraines.
About
a year after the onset of the weird headaches (I call them ice-pick
headaches,) I noticed that I was losing some of my motor skills. I
had lost some of my fine motor skills in my fingers and hands. I have
always been clumsy but it started getting worse to where I was
falling into walls and doorknobs, tripping over nothing, etc. I
started losing my short-term memory, anything over about 24 hours
that was not totally out of the normal.
Finally
after battling these ice-pick headaches and frequent migraines for
almost two years, my family doctor referred me to a local
neurologist. She was very nice and brought up the MRI images just to
make sure. She was baffled the minute she pulled it up because the
brain stem was curved significantly. She said she had no ideas as to
why, what would cause it, or what it was. She was going to do more
research and in the meantime, gave me Elavil to help me sleep. Most
medications that make you tired give me a lot of energy and jitters.
Benadryl, Codeine, Phenergan, even Tramadol make me energetic and
bouncy.
I
go back for a follow up with the local neurologist and I don't think
she did any research because she was still confused and baffled. She
did a referral to OSU Neurology. It takes a while to get in there so
in the meantime, she ordered a CT Myelogram. This is a test done
where they inject dye into your spinal column and take a CT scan to
check for leaks of CSF. This test too, came back normal.
Finally
in June of 2014, I made it to OSU to see the Neurologist there. They
looked at the local MRI and immediately made the conclusion of Chiari
Malformation, or low-lying cerebellar tonsils. They ordered two more
MRI's, one was to check the CSF (cerebral spinal fluid) flow and the
other of my auditory canal. The ear one is because I actually hear
myself breath, chew, pop joints, and even my heartbeat. They also did
a referral to Neurosurgery. A couple weeks later, I followed up with
the Neurosurgeon and he suggested surgery in the form of posterior
fossa decompression surgery. It is now scheduled for the 24th
of October. I wanted to save up some leave time and still keep it in
the same deductible year.
As
for the Chiari Malformation itself, I am not a doctor, but this is
what I have gathered from my own research. The diagnosis is a little
misleading because many people have the “malformation.” The
cerebellum is the small part of the brain that controls
“thought-less” actions such as balance, coordination, fine motor
skills, etc. It sits in the back bottom of your brain, just above
your hairline in the back. The cerebellum also has tonsils, or small
pieces that protrude downward. Normally these still remain above the
spine. There is (an imaginary) line drawn from the base of the skull
to the top cervical vertebrae. This is called the foramen magnum. In
people with Chiari malformation, the cerebellar tonsils lie below
this line. Many people have the tonsils that lie below the foramen
magnum. But if they lie further than 5mm below, they will give the
Chiari diagnosis. In my case, my symptoms (the ice-pick headaches,
balance, motor skills, etc.) come from a restricted CSF flow. CSF is
the fluid that cushions the brain. It is made in the brain, then
circulates by gravity and the pulsations of the heart down the spinal
column and is eventually reabsorbed into the body. With the low-lying
tonsils, the flow is limited. When I strain, it is completely
blocked. The headaches are caused by a rush of fluid and drainage.
Imagine wrapping a string around your finger tightly, this is the
complete blockage of the CSF. The when you quickly remove the string,
you get a painful rush of blood into your finger. This is like the
return of the CSF flow.
Mine
were at 10mm below foramen magnum. The condition itself has no cure
or source either. They are unsure how people develop it because most
people never have any symptoms. Those that have symptoms generally
have no previous MRIs to compare it to. The only treatment of the
malformation is posterior fossa decompression surgery. This is a
procedure where they surgically remove a small section of the skull
bone that covers the cerebellum. They also open the dural sac, which
is a small covering over the cerebellum, and place a patch over it to
allow the cerebellum to pull up out of the spinal column and back
into the expanded room in the skull. This will allow for more room
for the tonsils as well as the CSF flow.
I
am looking forward to the surgery and I'm hopeful that it will at
least allow me to really laugh again. Right now, laughing is one of
the things I try very hard not to do because of the pain. More to
come later...
But
please note: just because someone is given the Chiari diagnosis
doesn't mean that they will require surgery. Surgical treatment is
used as a last option for management of symptoms. Many people (likely
more than documented) live with Chiari for a lifetime with no
symptoms. Symptoms vary greatly and are different for everyone. My
suggestion is this: if you have migraines, frequent headaches, and
other neurological symptoms, demand an MRI and then have it read by a
good doctor (generally not found in rural areas) that have a
background in neurological disorders!
