How it all started.

Age 12-18:

I still remember the day so well. I woke up and knew something had changed, but had no idea by how much. I had pins and needles down the right side of my body. I hadn't been super healthy previously thanks to my asthma, but this was different. Initially we decided to just keep an eye on things. Personally was more interested in attending school today. We were going to a high school to attend a sports carnival as spectators. So I was just anticipating a fun day of hanging out with my friends.


I remember to this day the running track was bright blue and thats a image that still sticks with me. It was around lunch time my next symptom hit as my friend and I went to seek out the joy of getting some junkfood from the tuckshop. However, this time I needed to keep hold of my friend as I had lost depth perception and was having trouble transversing the field.


When I got home it was agreed that we needed to at least see our local physician. I still remember which doctor it was (I ended up seeing him for many years after). He looked at my eyes and was so interested/concerned by what he saw he brought in another doctor. What he was seeing is an issue called Nystagmus. This is where the eyes flick back and forth (or up and down). They agreed I needed to go to hospital, so we packed off to the Emergency room. I don't remember much of that except the neurological test where I was meant to stand on one foot and walk a straight line. Now that should have been easy, I was a ballerina doing pointe work. It wasn't. They were now working on ruling out a stroke in a 12yr old. Late the night we were released with a a script to get a CT performed tomorrow.


We got that scan (I wish I still had the files) and the neurologist said I had a "perfectly normal brain" boy was I to prove them so very wrong. It was decided I had a cerebellar ataxia from a viral infection. Then to come back in 3 months when I should be better for follow-up. I didn't get better, the neurologist thought I needed more time to recover and come back in 3 months. Yet again no improvements, in fact I was having difficulties reading because the page would white out and my eyes jump all over the page and headaches. I was also very fatigued, spending a lot of time when I went to a camp resting in the tent. We requested a second opinion. It was given, but was even less helpful. They decided it was migraines, my mother disagreed as they were nothing like the migraines she suffered. We left and it wasn't for another 6 years when I turned 18 and I was able to take myself to the doctors that there was any help.


During those 6 years I missed most of high school and the start of university. While it's been too long to remember all the symptoms. I just felt too tired and sick. I also developed pain in my right arm that resulted in me strapping up my arm trying to help. I luckily graduated with a decent enough mark to get into university and moved out of home. Being where no one was watching me I spent more and more time in bed and started missing work more as that pain was too much.


Being in the first year of university I actually did try to attend some parties. It was two alcohol related injuries that got me to see a doctor again. First I had dislocated a finger while opening a screw top drink. Another time I was leaving a bathroom when a drunk girl slammed the door open. I had put my hand up to stop it hitting my face and I dislocated fingers again. So I saw a random physician local to me because I was literally falling apart! On hearing my issues and my family history of Multiple Sclerosis she felt I really needed to see a neurologist again.


So I finally attended this specialists with my mother. I didn't really feel like the neurologist felt it was that interesting, but he sent me for an MRI just in case. So I got to try my first time having an MRI. I remember being so worried as they had me fasting with water and this was my first major medical test.


We attended the specialists rooms not soon after, but this were different this time. When I came back in the neurologist re-did all the neurological tests we had done very recently. He told us he did this because of what he saw on the MRI. He could not understand how I was even walking let alone have only mild neurological issues. He thought after seeing the MRI he had screwed up the tests as they just didn't match what was going on internally. That's when I heard the words "Chiari" "Syringomyelia "Brain surgery". My brain was falling into my spinal canal and cause a cyst to form in my spine causing spinal damage. I needed to see a neurosurgeon and soon to discuss surgery.


I remember going to work that evening for my shift. I was working checkouts at a big supermarket. It was probably a Wednesday, as I chose to work that night knowing it would be quiet and that I liked the team on. I needed the distraction, my mum spoke to the team leader to let them know all that was going on. So that is the "Diagnosis" part of my story and how things started. It is a long story to get up to where we are now in 2019 so the next chapter will be in the next blog.

MRI of Brain with Chiari Malformation
Brain MRI

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