So I have failed miserably at updating everyone recently! I had finals for
school (which went very well!), family came in town for Thanksgiving, we went
out of town for a friend's wedding and Christmas, and I had the stomach flu
(TWICE).
So unfortunately I have some not so great news to update with. As I had
updated a couple of months ago I have been having headaches since May of last
year. They came on out of the blue and we were not sure why they developed or
where they came from. Last I had left everyone we thought that my intracranial
pressures (ICP) were high and were pursuing testing to determine whether or not
venous stenting would be an option for me. This procedure would have been done
if there was a venous abnormality present causing my ICP to be high. After
having a special type of MRI done, called an MRV, to check my veins the
vascular surgeon did not see any reason why my pressures would be high and saw
no vascular abnormalities of any kind.
At this point we were left with two options. Go back to our original plan of
pursuing more invasive testing of ICP or continue delving a little deeper to
see if there was something else going on that we hadn't considered. Now this
local neurosurgeon trained under my wonderful neurosurgeon, Dr.
Rekate, in New York and is one of the only surgeons to perform both vascular
surgeries and more traditional neurosurgeries. After he heard my neurological
journey and symptoms through the past several years one point really stuck out
to him: I had immense symptom reduction after my craniocervical fusion. Despite
needing another neurosurgery (my tethered cord release) I was like a completely
new person after my fusion. My symptoms were dramatically reduced and I was
able to function again as a "normal" human being. I had no headaches
after this surgery and my neurological symptoms like ringing in the ears, pins
and needles, weakness in my limbs, and double vision almost completely
disappeared too. With all this in mind this neurosurgeon decided that he wanted to
run further tests to check on my fusion and ensure that it was still doing
well. We thought that since I had such a sudden reemergence of symptoms that it
was possible that something was wrong with my fusion.
The problem with this theory is that I have had numerous MRIs recently and
they have all showed that my fusion looks great! The first and easiest test to
check on my fusion was a flexion and extension x-ray. This is an x-ray taken
with my neck bent all the way until my chin touches my chest and then another
x-ray is taken with my neck bent backwards as far as it will go. The two images
are then compared to determine whether or not there is a shift of the hardware
of my fusion. Ideally no movement of the hardware should occur, which is
exactly what we saw on the x-rays.
Now after the x-ray we were left with two more tests that we wanted to run. Thankfully we were able to have both of the scans done at the
same time which helped to decrease the time we had to wait. The first scan we
did was another MRI. The doctor wanted a special series of images on the MRI
machine to view my venous structures in more detail. After reviewing this scan,
he is even further convinced that I do not have any venous abnormalities and
that that is something we can rule out.
Next, he wanted to have a CT scan done of my fusion to view it in greater
detail. A CT scan takes a number of different x-rays taken at various angles
and combines them together to form a computer generated image of the part of
the body you want to see in greater detail. While MRIs are good to view soft
tissue structures, like the brain and cartilage, it is not ideal for viewing my
fusion because the metallic hardware shows up as bright spots on the images and
can obscure the structures around it. The CT scan, on the other hand, is my
better at showing us my fusion in detail because it shows the bony structures
and the hardware is much clearer on this type of scan.
Thankfully this CT scan did provide us with some answers that we needed!
First, let’s start with a picture of what my hardware looks like:
(You are looking at the back of a skull and the first three cervical vertebrae of your spine)
This is the type of hardware that the new, local neurosurgeon uses, which is similar to, but
not exactly the same as, what Dr. Rekate uses. I have screws (the larger purple pieces at the bottom of the piece of hardware) that go into the
top cervical vertebrae, C1, as well as the second vertebrae, C2, as is shown in
the picture. I also only have two screws (the small purple eyelets on the skull) in each side of the hardware that
attaches to my skull instead of the three shown in the picture. Bone is
supposed to form around the rods that go down from the skull to the cervical
vertebrae, which further stabilizes the fusion and ensures the craniocervical
joint is fully stabilized. Also, how fitting is it that my hardware will be purple?!?! For those who don't know purple is my absolute favorite color!
With that visual and explanation you can better understand what the results
of the CT scan told us. The CT scan showed that on the right side all of the
screws were firmly in place and that bone was formed completely and securely
over the entire rod that goes down from my skull to my vertebrae. This side
looks perfect and exactly what we would expect to see from a secure, solid
fusion. The problem, however, occurs when we look at the left side of my
hardware. The screws in my cervical vertebrae are solidly fused and secure, but
the screws in my skull, on the other hand, are another story. These screws are
fairly short, at only 6 mm long, which is about ¼ of an inch. These screws
should be completely through the bone of my skull and the head should be flush
with the bone. This is how they are on the right side, but on the left they are
only 3mm in the bone. This means that they have loosened and are halfway out of
the bone they should be in. In addition to this there is no bone formation on
the rod as there should be. This means that the hardware is not solidly fused
and the left side of the craniocervical junction is unstable.
We do not know why the fusion has failed on that side and the screws have
come loose. I could have bumped my head and loosened the screws or they could
have just wiggled loose over time. We believe that there was good bone
formation initially, but for any number of reasons the bone has been reabsorbed
(the body just breaks it down and metabolizes it) and the screws have wiggled
loose and are not holding my skull securely to my spine anymore.
Now my symptoms are not presenting the same as they did when I needed my
first fusion. The largest complaint I have had is headaches that are present on
the top of my head. They feel like my head is going to burst and the pressure
is incredibly intense. I have also had some blurry vision and ringing in the
ears. These symptoms all lead us to think that I have pressure issues. The headaches
and pain I had prior to my initial fusion were all in the back of my head, not
up on the top and involved far more neck pain and discomfort. We are not 100%
sure why my symptoms are presenting differently this time. There are a couple
of guesses we have 1) my symptoms are not from the fusion becoming unstable and
this is a completely separate issue to what is actually causing my symptoms
(even if this is the case I still need to address the fusion not being solid
because the loose screws in my skull are at risk for dislodging completely from
the bone) 2) The nerves on the back of my head never regained function after my
last surgery so I have a numb spot on my head. The symptoms that I previously
felt on the back of my head may be being referred up towards the top of my
head. 3) since the instability is isolated to a higher location, only my skull
vs my skull and my vertebrae, and it is only on one side of my head I am
feeling it differently than before. I do not have the neck pain and fatigue
that I did before because half of my fusion is still solid and my brain stem is
not being nearly as compressed as it was previously.
Given those thoughts we cannot know which is truly the reason for my new and
differing symptoms. At this point we have to address the fusion being loose
because like I stated before it is hazardous to leave loose screws in. My
brainstem may also begin to be compressed again by the instability, which is
not something we want to go through again. This will be addressed by performing
a fusion revision. The hardware on my skull on the left will be removed and
replaced with a new hardware and reconnected to the vertebral hardware. The vertebral
hardware will not be touch and the right side won’t be touched wither.
The question of whether or not there are additional issues going on,
specifically issues with my intracranial pressures, is something that we will
have to table until after I heal from this fusion. If my symptoms are resolved
after I have healed from the surgery we will know that the loose hardware was
the cause, but if they do not then we will pursue further testing of my ICP. I
will go into that more in another post, but unfortunately we cannot do the ICP
test during this surgery and subsequent hospital stay as we are worried
that the post-surgical pain I will be in will give us inaccurate numbers and
thus cause the test to be invalid.
Well now that I have written you all a novel of an update I will write a subsequent
post shortly with the information about the surgery and details pertaining to
that for those that did not want to make it through my novel to just get the
date and essential details! Thank you as always for all of your prayers and
well wishes, they mean the world to my family and I!
