My
Medical Adventures
In
2010, I married my DH (dear husband.) Prior to this, my medical
problems were contributed to other random coincidences (familial
arthritis, exercise-induced asthma, etc.) Shortly after getting
married, I went off BC and went with “all in God's timing.” Well
after two years, God's timing wasn't coming along and neither was
ours. So I started seeing my regular OB/GYN for these issues. I had
several tests and there were never any clear results. Some bloodwork
showed PCOS (poly-cystic ovarian syndrome.) Basically it's an
overproduction of eggs that don't grow big enough to become viable.
This was shown through various levels of hormones that were outside
normal range. All the mid-cycle ultrasounds looked good though. So we
went with metformin and clomid for a while.
Fast
forward to almost 2 years ago. I was moving furniture to clean the
backs of the dressers and entertainment center (very dusty and
gross!!) After moving them, I got this crazy rush of pain in my
forehead and nearly passed out. I just thought I had over-strained
and maybe pulled something. I didn't think much about it. I started
getting pretty significant migraines that were attributed to eye
strain and stress from my job. I got glasses (DH says I was nearly
blind---it was pretty bad!) The migraines got better, but were still
occurring 2-3 times a week. I asked my family doctor about them and
we tried several different things over a few months (different
medications.) The only thing that ever has worked was Imitrex for
migraines after the fact-no prevention. So she ordered an MRI. The
MRI was completed in March of 2013 by our lovely local hospital. It
came back as normal with only mild sinusitis.
From
that point, I started getting these crazy sharp pains in my forehead
any time I strained. At first it was just with heavy strain-lifting,
pushing, pulling, etc. They then began getting more frequent and
happened when I coughed, laughed, sneezed, stretched, etc. So at
another regular visit to my family doctor we continued talking about
these sharp pains. She had no ideas so she referred me to the
neurologist....also at the lovely local hospital. The neurologist met
with me about 3 months later. She said she was a little concerned
with the initial MRI (done a year ago at this point) because of a
significant bend in my brain stem. She was baffled and promised to
research it a little and prescribed Elavil for sleep-because I
clearly have trouble getting tired and sleeping normal. I went back
after a month and I am pretty sure she had forgotten about me and we
did the same thing all over again-as if she thought a month would
solve my problems on their own. So we then went another month and she
decided to do an MRA to check for aneurisms and blood flow. This came
back normal. So another two months because of course we had to wait
for insurance to approve it. She then did a little research (with me
in the room on the internet---webMD much!?) So then we went for a CSF
flow study via X-Ray and CT scan. This was AWFUL. I was placed face
down on a metal table, strapped my ankles down, numbed the small of
my back and then placed a needle into my spinal column to inject dye.
I had to lie on my stomach but kink my neck at a 90* angle to prevent
the dye from going to my brain. They then did a number of X-Ray's and
the CT scan. Afterwards, I was sent home and rested when I had some
pretty significant pain like two days later-thankfully my family
doctor gave me a Rx for Tramadol for pain.
At
this point I notice through different approaches a number of other
symptoms. I have the balance/coordination of a 1 year old-I trip,
stumble, wobble, etc. all the time. I cannot walk in a straight line.
I have a “thrumming” in my left hear that coincides with my
heartbeat and when I press on my carotid artery, I can hear the blood
whistle through the artery. I have short-term memory lapses. I can't
remember anything past 24 hours or so unless it was substantially out
of the ordinary and even then it is kind of fuzzy. I have a loss in
judgment, sometimes it's hard for me to tell how far away something
is-50 feet looks the same as 500 feet. I have less hand strength and
fine motor skills. I am unable to pickup small things from a flat
surface. I sometimes get confused and forget what I'm doing mid-way
through it (walking into a room, mid-sentence and I can't remember
what I'm talking about, etc.) I get easily choked, especially on
fluids-including my own saliva. And oh the pains. They are so
frequent that they occur probably 20-50 times a day and are worse
when I am more active. They happen when I laugh, cough, sneeze, yawn,
stretch, strain, exert, etc. in any form. They only last a few
seconds but the pain is so crazily intense that I cannot move, talk,
anything. The more frequent they happen, the more likely I am to have
a migraine at the end of the day.
So
with my slew of symptoms and complaints, my lovely local hospital
neurologist decides to send me to Ohio State University Neurology. I
meet with them a few more months later. They are a teaching hospital
so at first I meet with the student doctor guy and then the actual
doctor. They do ((what I have found is the normal)) neurological test
of reflexes, walking, etc. After only meeting with me for 15-20
minutes and looking at the MRI completed by my lovely local
hospital-they are fairly certain of the cause. They just said
“low-lying cerebellar tonsils.” and order another MRI as well as
an MRI of my auditory canal because of the thrumming sound. They also
refer me to a neurosurgeon because they deal with the condition far
more and want to get their opinion. Note, at this point surgery is
not even mentioned-so we think more of a consultation type thing.
I
have the two MRI's completed at OSU (on a SUNDAY!) Then the
neurosurgeon agrees to take me on as a patient. The surgeon is
actually a director of the neurosurgery department at the hospital. I
meet with his student doctor first and he mentions surgery- Posterior
Fossa Decompression surgery for the official diagnosis of
Arnold-Chiari Malformation. At this point I had also done my own
research. The diagnosis is given with the cerebellum or cerebellar
tonsils (the little brain that sits in your skull above the neck in
the back-think of the “nape” of your neck and that little dip
where hair grows like a tail) lie below the foramen magnum (on an
MRI, they draw an imaginary line where the spinal column starts.)
It's a fairly common malformation and not always medically necessary
to treat. Many people's lie within 3-5mm below this line. According
to the OSU MRI, mine are almost 10mm below this line.
The
OSY MRI also included a CSF flow study which showed limited CSF flow
in the back part of the canal and possibly limited mildly in the
front. The neurosurgeon explained it as when I strain, the muscles in
my head and neck press in on my neck and down on my brain causing
these tonsils to completely block the CSF flow. This causes a buildup
of pressure within my brain. So the actual neurosurgeon agreed with
the student doctor and recommended surgery.
The
surgery itself is explained like this: a 4-5” area is shaved at the
base of my head/neck, in a 2” wide path. (Like they just mow down a
streak of hair!) They then make an incision in the skin and push the
muscle away instead of cutting through it. Then a small section of
the skull bone is removed. They cut into the sac that contains the
cerebellum (dura) and place a patch of dermis. This is like adding a
patch to pants that are too small to make them bigger. If necessary,
they shave off a portion of the top cervical vertebrae. Then they
place a titanium mesh plate where the skull bone used to be and
stitch everything up. It is a 3-4 hour procedure. Then there will be
2-3 days in the hospital followed by at least 4 weeks at home
recovery. The recover can be painful due to the stretching of the
muscle and it being tender and tight. They will prescribe medication
to aid in the pain which is scary because most medication completely
wind me up.
So
my surgery is scheduled for October 24th. My doctor is
going on vacation the week before, so he should be well rested! I
know that a lot of my family and friends are concerned, but I am so
excited. The surgeon said this should resolve the mega intense pains
I get throughout the day so I will be thrilled with just that! I look
forward to being able to laugh again! I also will be pampered at home
by my husband who has taken two weeks off and my mother who will be
staying for at least a month. That's not to mention the rest of the
family and church family that I am hoping will keep me (and them)
sane over this time!
I
am hoping to keep up with this blog over the course of the next few
months so that not only will it remain a resource for others, but
also a nice little diary of this journey. Keep ya posted y'all!
