This post will include my Chiari surgery and recovery. In
December of 2012 I decided to follow the advice of the rheumatologist and go
back to Loyola University Medical Center and see Dr. Anderson again. He was
happy to see me back and concerned that my symptoms were not getting better. He
was extremely kind, looked at my new MRI from August and said that my
malformation had gotten worse and my cerebellum was now descended about 8mm
beyond the bottom of my skull. He debated again as to whether or not I would
benefit from the surgery, but in the end he apologized and said that he thought
he had made the wrong decision nearly 2.5 years ago and that he should have
done the surgery. I ended up scheduling the surgery for 12/21/2012. I cleared
all the pre-op tests just fine except for the anxiety!
Ok before I go into my experience with the surgery I will
explain what the surgery is. This is the explanation that I sent to friends and
family: “This
surgery is called a Chiari Decompression surgery. The surgeon will increase the
opening at the base of my skull, the foramen magnum, using a high speed
drill. I am not clear at this point if he will also be removing the top arch of
my first vertebrae as is commonly done during this procedure. He will then take
a piece of pericranium tisue (a piece of deep scalp tissue just outside
the skull) and use this to patch the covering of the brain (the dura) and
create a larger space for my cerebral tonsils. The goal of this surgery is to
increase the space for the cerebral tonsils and decrease the intracranial
pressure while at the same time allowing for an easier flow of cerebrospinal
fluid”.
The surgeon ended up not removing the top arch of my first
vertebrae.
I was extremely nervous, but I was also ready to go do the
surgery! The day of I was very dizzy from being dehydrated and my nerves were
on edge from being overtired and anxious. Both of my parents, my fiancé, and my
future mother-in-law were all with me, which helped tremendously. The surgery
ended up being later than we expected which was hard since we were just sitting
in the waiting room. I ended up crying numerous times during those two hours,
but hey who can blame me? The surgery was supposed to start at 10 a.m. and I
was to be called back at 9. I was finally called back at 10:30 or so and I said
goodbye to everybody but my mom who was going back with me. It helped to be
doing something finally! I changed into my gown and started signing all the
papers and receiving all the instructions. They then put the IV in, which is
never easy with my small veins and made even more difficult because I was
dehydrated. They finally took me back to the O.R. this was the first surgery
that I actually remember being in the O.R.! That was interesting, it is really
cold and quite intimidating, but at this point I was not scared, just ready to
get it over with.
The surgery ended up being closer to 6 hours than the
anticipated 4… This freaked out my family, but obviously it didn’t faze me at
all. The next thing I remember is waking up in the recovery room with the BEST
nurse ever. I really was not in that much pain at all and felt great from all
the meds I was on. I was actually really hyper and things only got worse when I
got my morphine button! It took forever for my family to be able to visit me,
but finally they came up and it was really nice to see them. They neurological
intensive care unit was full so it took a long time to get me a room for the
night. Finally at about 9:30 I got settled into a room. I was still feeling
pretty well and not using the morphine button very often. I forgot to tell the
nurse that anesthesia made me vomit… that was a surprise to her when at about
10:30 I began vomiting over and over again and it wasn’t controlled by the
nausea meds. I didn’t like her very much, but the look on her face when I was
vomiting ALL night was really priceless. My mom wasn’t able to stay which was
sad. I hardly slept that night due to the meds and the vomiting, but other than
that I was doing ok. As long as I didn’t move it wasn’t too bad, but honestly it
felt like I had a cinder block strapped to my head. Moving my head was not fun
at all and I was very grateful for the catheter so I did not have to get up to
use the restroom.
The next day the neurosurgeon did his rounds and said I was
ready to move to a regular room. Yay! He said the catheter and the arterial
line in my wrist could both come out. This was very good news since it was two
less lines I was attached to! I was then able to get out of bed with my mom’s
help. I was terrified to get out bed, but it was actually very easy to do and I
had no problems. I was then transferred to a regular room. I had a PT
evaluation, which I passed with flying colors. I did stairs just fine and could
walk up and down the hallway with no issues. The only thing I didn’t pass with
regards to that was that I was not allowed to be in the dark because I would
get dizzy. This was an easy fix; I just had to sleep with a nightlight on.
An unexpected issue from this surgery was that I could not
swallow anything solid! It would get stuck in my throat and I would cough it
back up. The speech-language pathologist came to evaluate me. As sad as this
sounds I was VERY happy she came! It was fascinating to see her work and be on
the patient end of therapy as this is what I want to do after college. She said
nothing was wrong and that it was probably due to weakness from the muscles in
my neck being cut. I just had to drink protein shakes for a couple of weeks and
this issue resolved itself.
Ok I guess I have made the pain seem like a non-issue at this
point, but that was not the case. After the meds from the surgery itself wore
off I was in a lot of pain. It hurt to even roll over and holding my head up
was difficult. I got a soft collar neck brace to help support my head. This
helped and at this point I was ready to go home. I spent one more night in the
hospital and was discharged on December 23. This was great since it was in time
for Christmas :)
Ok this is already really long already so I will finish up the
rest of my Chiari surgery journey later. Reminder we are at the end of December
of 2012 at this point.
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