Story about Arnold Chiari .

I waited years

Apr 3, 2016


From the age of about 14 I started slowing down physically in sports I used to be really good and coordinated in. I just put that down to my growing body not keeping up. I would get headaches and feel week really often. I would get pressure in my head and face and feel generally off. I was always the friend of my group that had pain relief on me because it was a constant part of my life. When seeing my doctor in my early teens it was always put down to a sinus infection or in my later teens a virus and I would come right. I had sinus surgery when I was about 16 where they scraped out my sinuses and straightened my septem but they said my sinuses weren't that bad to begin with. I kept getting "sinus infections" after that but they weren't that at all. I had my appendix taken out a few months before my first sinus surgery. During that surgery my jaw was wrenched open and became locked when I woke up. I had to see a physiotherapist who helped loosen things up so I was able to open my jaw again. In the first sinus surgery the surgeon used a technique where he took out cartilage from the centre of my nose as I had a deviated septum. This caused the tip of my nose to droop and i ended up with a hole going from one side of my nose to the other. At the age of 20 I saw a specialist to fix the hole and the tip of my nose up and while discussing with him my general symptoms he suggested that maybe my issues were still coming from my jaw. At 21 I went and saw an amazing Jaw specialist. He did everything he could in a minimalist way to try and help me. He isnt a fan of surgery until it is deemed necessary. After many struggled efforts at using bite splints and being on a liquid diet for a month nothing had helped ease the pain and symptoms. He suggested an MRI of the jaw and in a scout scan of the brain they discovered a 14mm herniation of my cerebral tonsils.. Arnold Chiari Malformation Type 1. I recieved the diagnosis just before my 22nd Birthday. Things have happened quite quickly since then. I have done a LOT of research. _The general public, my family and friends had no idea that Chiari even existed. I have met so many medical professionals who have no idea what Chiari Malformation is._ _ONE DR EVEN ASKED IF CHIARI MALFORMATION WAS IN THE UTERUS..._ I was always misbehaved as a kid. I have probably had many of the symptoms since a young child but could not comprehend them back then. _It has given me some form of comfort now knowing why I am like this and knowing there are other people out there. _BUT THERE IS ONE THING I KNOW FOR SURE, THERE NEEDS TO BE MORE AWARENESS IN NZ AND ACROSS THE WORLD._ I will do everything I can to raise awareness in the hopes that other people don't have to struggle for anywhere near as long as I did without knowing._

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