22/06/2023
my diagnosis journey
In january last year (2022) i noticed that my right eye had started to twitch on and off and throughout the year, it became constant, making my eye tired and causing headaches and fatigue. I had a very weak glasses prescription for headaches at school which everyone saw as normal (because i was looking at screens for most of the day). Fast forward to december 2022, I went to a routine opticians appointment where i brought up the eye twitch and severe headaches and they ran a visual fields test as they saw no abnormalities in my regular eye test. This came back showing that i have little to no peripheral vision in my right eye. They then made a referral to burton hospital.
My first appointment there was another visual fields test and other eye tests and scans. I then met the opthalmologist who then booked me an MRI.
This MRI showed that i had chiari malformation and a pituitary tumour- but they hadn’t found the craniosynostosis yet. After a while, we hadn’t heard anything but people around me had noticed that my pupils were really dilated and weren’t changing so after a day, i went to see my gp who told us to go straight to burton hospital. we were in and out of here for a week where they did another MRI and more tests. Then after Birmingham Children’s had gotten in touch, they requested a CAT scan. My next appointment was then at B*H where i met my surgeon who told me i have craniosynostosis. he explained it really in depth and explained that i will have to have surgery sooner or later. After yet another MRI and a set of eye tests, i was taken into a room with 8 medical professionals (surgeons, students, nurses etc). They told me that this summer, i will be having surgery. and that brings us to the present day and i am having surgery on the 13th of July.
Moral of the story, please go and get checked if you feel anything abnormal with yourself and please do it sooner rather than later.
And most importantly, Keep smiling 💜
