Hi everyone! The neurosurgery saga continues! This is a long update, so if you have any questions please let me know!
If you all
remember I was supposed to be in a cervical collar for six months in order for
us to see if we could get my craniocervical fusion to stabilize since my screws
from my fusion revision last February (2017) came loose again. I made it to 4.5
months and was feeling so rotten that I decided to call my surgeon and get in
sooner. I saw him last month (2/6/18) and he ordered a number of imaging tests
on my neck and spine. I had a couple of different x-rays done, a CT scan, a
full spine MRI, and a bone density scan.
After we got all the results back we decided to move forward
with a more extensive cervical fusion. The x-ray showed that everything looked
the same as it did back when we imaged in September. We then did a flexion
extension x-ray in which they took images of my chin tucked into chest and bent
my head back as far as it would go. This shows differences in your neck with
movement. The results of this x-ray showed that despite my loose screws my
fusion was holding everything in place well enough that nothing is moving.
Next, we did a full spine MRI. This shows the spinal cord and discs in your
spinal column, which you cannot see on an x-ray or CT scan. This showed my
tethered spinal cord release in my lower back was still ok and that my cord did
not reattach itself to the spinal column (which there is always a chance it
will). It also showed no pockets of fluid have developed in my spinal column
(called syringomyelia), and that my Chiari 1 malformation (the back part of my
brain (cerebellum) descending into my spinal column) still had plenty of room
from past surgeries we have done to give my cerebellum more room. The one thing
this MRI did show is that I have a pocket of cerebrospinal fluid (CSF) called a
pseudo meningocele in the very back of my skull. I did not realize that I have
actually had this for a while now. This pocket of fluid got slightly bigger
since my last MRI a year ago, but it definitely changed shape. I will talk more
about this pocket in a minute. Finally, we did a bone density scan to ensure
that I did not have low bone density causing my fusions to fail. This test came
back perfectly normal for my age and sex.
I had gotten a surgery date of April 6th, but got
a call at the beginning of this week that they had a cancellation and wanted to
change my surgery date to Friday 3/9/18! I had to rush around to get everything
scheduled that I needed to and was able to get into clinic this past Tuesday to
discuss an exact surgical plan and sign consent forms. Once we started
discussing the surgery my surgeon admitted that he was not 100% sure that this
surgery was going to fix my symptoms. We always know there is a chance that surgery
will not help, but he said he felt like he was missing something. He had talked
with many other surgeons and other medical professionals and just felt like
there was something else we weren’t looking at correctly. I love my surgeon and
he highly values my opinion and knows that I am well educated on my condition
and the nervous system. We discussed all of my imaging, past history,
surgeries, and symptoms. The one thing that has always stuck out to me is that
I have symptoms of having high pressure in my brain. I have headaches that get
worse with laying down. I had a lumbar puncture done to check my pressure and it was considered
borderline. The problem with lumbar punctures is that they only take a reading
of the pressure in your brain and spinal column at one instant. It is like
taking your blood pressure: you may have a good reading in the morning but have
high blood pressure in the evening. The medication used to treat high
intracranial pressure is a medication called Diamox. It essential pulls the
extra fluid off your brain and spinal cord and drains it. I am on this
medication but I can only be on a super low dose. This medication lowers the
CO2 levels in my blood, so we cannot increase the dosage at all. The dose I am
at is not high enough to control my symptoms or conclusively tell us if the
symptoms I am having are from high intracranial pressures.
In order to conclusively determine whether or not I have
high pressures in my brain we did something called invasive intracranial
pressure monitoring. The specific type of monitoring we did is an external
ventricular drain (EVD). During an EVD a small tube is place into a ventrical
in your brain. The ventricles are where CSF flows through your brain. This tube
is hooked up to a system that allowed them to monitor the pressures in my brain
and also drain off extra fluid to see if decreasing the pressures in my brain
provided me symptom relief.
This surgery was actually done last Friday and we have been
in the hospital since. I was in the neurological ICU until Monday. We monitored
my pressures for those three days and determined that my pressures were normal.
They went up when I laid down, but were still within the “normal” range. At
this point the surgeon was not sure what he was going to do. We decided to open my drain to see if lowering
my pressures would help relieve my symptoms. My drain was opened on Monday and
within an hour enough fluid was drained out of my brain to provide relief for
the headache that I have gotten every single time I lay down for the past two
years. After having the drain open for almost 48 hours my surgeon made the
decision to go ahead and place a shunt later today.
This is my CSF after one day of draining. As you can tell it has the color and consistency of water.
A shunt is a device that pull fluid from within my brain and
drains it down a catheter into my abdominal cavity. It is implanted within my
brain and there will be a valve that can be programmed in order to set the
pressure that my surgeon wants in my brain. He is thinking to set it low
because that is where my symptoms seem to be best resolved. He then will feed
the catheter down through my neck, down my chest (around my port), and into my
abdominal cavity. The fluid is then absorbed by my body. This type of shunt
will allow my fluid to only drain when my pressures go high, which is important
since my pressure is not high when I am sitting or standing. The surgery will
be short (between 2-4) hours and recovery should not be too bad. The biggest
risk from here on out is infection. I will finally get to go home from the
hospital after 24 hours of antibiotics, which should mean I will be released
Friday morning. This has been my longest hospital stay yet and I will have had
two surgeries during this stay. Joseph and I are ready to get home! The other
difficult part about this stay is that my service dog Reilly is not allowed to
stay with me. He stayed with Joseph’s brother and family for a couple of days
and then has been with my parents for the rest of the week. I have never been
away from him for more than one night in the last 3+ years, so I am VERY ready
to be reunited with him!!!
After I am healed from this shunt surgery my surgeon and I
will go back in and have a fusion revision and extension done. I will make a
subsequent post about that, but we are thinking that could be as soon as 6-8
weeks from now. Thank you all for your continued prayers and well wishes throughout
this journey!
