User blog:Zaffie/This Is Another Serious One: Help Raise Awareness

Hey, guys. I know, I know, two serious blogs in two weeks. There must be something seriously wrong with me, right?

Well, there is. This is... hard for me, since I'm sure you all know I don't like to use the self-pity angle or anything like that. But this isn't just about me.

A week and a half ago, I went to have an MRI scan. I'd been having constant, excruciating headaches for a while, and they were getting worse. These headaches are... impossible to describe. They were like no pain I had ever felt, and while they were going on I couldn't move, breathe, speak or see. The headaches would last for maybe 15-20 seconds, and they would come on suddenly after I coughed, laughed, held my breath, yawned, stretched, etc. It got to the point where every time I did one of these things I would cringe afterwards, clutching my head and waiting for the pain to strike. I can't remember exactly when these headaches began, but they have been going on for a long, long time, probably two years or more. In the past 6-8 months, the headaches were getting worse and worse, and I couldn't bear it anymore. So we went to a doctor, and she sent us to have an MRI.

Last Friday, I got the MRI results back. I have what is known as an Arnold Chiari Malformation 1. This means that a part of my cerebellum (the back of my brain, near my neck) is actually falling out of my skull, and pressing on the nerves at the top of my spine. This is what is causing the pain. In my case, the chunk of brain coming out of the skull is 2.7cm long, but it will differ in different people. So far, the headaches only occur when I increase pressure in my skull by doing the things listen above, but they are becoming more permanent. If this continues, I could start to get the same pain or weakness in my legs or arms, and after enough time I could become completely paralysed. I mustn't allow anything to increase the pressure in my brain to a dangerous point - this means no scuba diving, etc - and I must do my best to keep my neck safe and still, which rules out anything remotely dangerous for necks - think horse riding, going on a roller coaster, running, playing soccer, climbing trees. Riding a bike. Driving a car. Anything.

The only solution is an operation - on my brain. Brain surgery is dangerous, and the results aren't always what you intend. I believe that the surgery they advocate for me would involve drilling a hole in my skull to relieve pressure - as you can imagine, the pain after that would be excruciating (think breaking a bone in your head). On top of all this, there is no garuntee that having the operation would stop the headaches or relieve any of my symptoms. So right now we're just trying to work out what to do, and I'm struggling to deal with the idea that my brain is falling out. This syndrome, or malformation, is actually relatively common - but the symptoms that come with it are much, much more rare. There is no medication that can dull the pain of these headaches, and no miracle cure for Chiari. In fact, next to nothing is known about it - there is no research, and a limited number of specialists.

I'm sure you guys can all imagine how terrifying this must be for me, but I'm not asking for sympathy. I'm asking for awareness. Just... do what you can. Google 'Chiari'. Learn about it, talk to friends and family about it, find out if anyone you know has it. Ask your teachers about it, find out if it's ever been mentioned in Science or whatever. Just try and help raise awareness - ANY kind of awareness. I've always heard about these rare diseases, and how they want awareness, and I've tried my best to help. Now it's MY rare disease, and let me tell you, there is next to nothing known about this. There is no research being funded, or even requested. And yet this is a disease which causes pain that feels like torture, it can paralyse and maim both children and adults, and it can even kill people. This is the kind of disease we should be researching. This disease can and will seriously affect the lives of everyone who has it - and now that includes me. Please, guys, just take a moment to look it up - Facebook, YouTube, Wikipedia, Google, the library (what? You didn't think I ONLY meant the internet, did you?), anything. Please help me raise awareness for Chiari. I don't want to pass this disease onto my children, and I don't want them to suffer in a world without knowledge of this, like I am. I don't want any part of this, but I was born with it and there is nothing I can do. But there IS something you can do, and I want you to do it. Just pass it on.