There are a few things that I want to talk about in this
update – even if I’m the only person who ever reads it – I need that outlet to
discuss what has happened in the last two and a half months of my life. It won’t all be sad sappy things; I
have a new math resource to share soon!
I know that in my last update I discussed how I had been sick on and off
during the fall. My immune system
was not on the same page as I was this school year. At the end of December, on the 29th, I went to an appointment to get my annual eye exam.
I had actually skipped the year prior because I had forgotten about it,
so I knew that I had to get in this year because I needed new glasses. (My lenses were so scratched from
cleaning my glasses at work with my shirt – I know, I know,
bad move!)
I went in a couple days after Christmas at around 11am. My eye exam seemed pretty normal until
the doctor was finished and told me that I had, what he believed, to be papilledema. Crazy word, right? It means that there is increased pressure
in the brain that causes the optic nerve to swell. While he didn’t think it was severe, he wanted me to go
downtown to the main hospital to have it checked out by a doctor there. He wanted me to go that day. I couldn’t even browse for new frames! I had to leave immediately and go. Now he said he didn’t think it was
severe, so I thought nothing of it and just figured “better safe than sorry.” My appointment with the doctor downtown
was at 1pm.
After a long eye exam that included more tests than I can
count, and pictures of the backs of my eyes, I was back in the waiting room of
the office waiting for some conclusions.
My head was pounding and my eyes were hurting from straining through
testing all day. The doctor came
back and said that he was going to send me down to the ER for a catscan and a
lumbar puncture – I didn’t know at this time it meant a spinal tap. By the time I made it to the ER, was
checked in, and sitting on a bed it was 3:30pm.
My time in the ER lasted from 3:30pm until midnight. During that time I had a catscan
(normal) and they attempted the lumbar puncture, but were not successful and
just seemed to tap a bunch of nerves.
It had that “chewing on foil” sensation. I was tired, I was hungry (hadn’t eaten since before my original
eye appointment at 11am), my head was throbbing so badly that I was clutching
the back of my head, and I was ready to go home! Somewhere in the chaos, at around 9pm, they told me I would
have an MRI at midnight.
Fortunately my girlfriend was with me and stood up to say that they
needed to admit me or put me in a room because I had been in there too
long. At around midnight I was put
into a room.
I don’t know what happened to that midnight MRI, but it
didn’t happen until around 3:30 in the morning. I hadn’t slept much because they were constantly poking me
for something and checking vitals.
I could already see the bruises forming all over my arms from the excessive
amounts of blood drawings I’ve had (I have iron deficiency anemia). Prior to this, I had never had an
MRI before. So when they finally
took me down (and I had to be wheeled there on the bed like I wasn’t capable
for walking) I didn’t think anything of it when they asked if I was
claustrophobic. I now know that I
am. My head was locked into what
seemed like a cage (reminded me of the movie The Man in the Iron Mask).
The MRI itself lasted about 45 minutes. I just tried to count as high as I could – but because of
the noise, I didn’t make it further than 752.
![]() |
My MRI image. |
Lets fast forward a lot – you know, skip the vitals and
further poking – to about 2pm the next day – December 30th. Over 24 hours after my original
appointment to get my eyes checked, just to get some cute new frames, I was
still in the hospital and finally finding out what the issue was. The neurologist came in, while my
girlfriend had ran to get me a change of clothes, to tell me that I had Chiari
1 Malformation. As soon as she
said “Chi---“ I already knew where she was going. I have three nieces and the oldest and the youngest both
have chiari. My youngest niece had
surgery last year to relieve the pressure caused by the chiari.
So what is it?
Well. Sometimes it’s hard
for me to explain, but here is what the National Institute for Neurological Disorders and Strokes has to say about it:
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain.
Kind of crazy, right? Now we are in the month of March and I'm still trying to figure all of this out. I am constantly going to different doctors appointments - today I am seeing a neurological optometrist - and it's a struggle and stressful, but I am going to figure it out one way or another. If that means living with it, having surgery, or taking medication for the symptoms I have - I will figure it out because I won't be defeated.
I'm sorry you have to go through this. Hang in there!
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