The Crazy Road I'm Now Traveling On

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 29^th, 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 30^th.  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.