My story - Diagnosed aged 12

Hi everyone, just thought I’d tell you my experience.

I’m Hannah. I’m 18 years old, and live in England. It goes without saying that I suffer from Chiari Malformation. I was diagnosed with Type I Chiari in August 2008 when I was 12. I had been symptomatic since I was a young child, but since the main symptom I did (and still do) get is headaches, and since migraines run in my family, nobody was too concerned. However, when I was around 11 I began to develop pretty poor coordination. I was constantly tripping over my own feet. After several GP visits I was finally sent for an MRI, where my Chiari was discovered. I consider myself to be fairly fortunate, as while I do suffer from some mild symptoms, they do not impact my life to a particularly large degree. I AM still pretty clumsy, with coordination that leaves a lot to be desired. I am appalling at any sport that involves throwing or catching a ball. When bending over I will still occasionally get a throbbing in the back of my head, which feels like someone is banging a mallet against the back of my skull from the inside, though this doesn’t always occur. I also suffer from migraines/headaches (these are probably the worst symptom, as they can and often are severe) and some mild difficulties in eating/swallowing. It’s odd, but sometimes while I’m eating I’ll ‘forget’ how to swallow, almost as if I’ve lost the reflex. I stumble and trip over my own feet a lot, and sometimes one of my legs (most often the right) will buckle under me, almost as if I’ve suddenly lost all feeling or strength in it. This, mercifully, only lasts a few seconds, but I have had a few near misses where I’ve had to grab onto a friend who’s walking beside me to avoid falling flat on my face! When I move my head from side to side I’ll hear a weird clicking/crunching sound. I’m sure many of you are shaking your heads and thinking ‘Man, this kid’s got it easy…’ Ha. I do feel fortunate, as I can see that many of you suffer greatly with this (and other) conditions. Oh, and I don’t know if this is related to Chiari, but sometimes my eyes will suddenly move left to right and back again REALLY fast. I cannot control this. It only lasts a couple of seconds. Is this a symptom of Chiari? I also have mild strabismus (lazy eye) in my right eye. I have not had any kind of surgery, as I do not believe my symptoms are severe enough to warrant such a major operation. Like I said, I live a RELATIVELY (if somewhat clumsy, accident prone) normal life. Thankfully, my Chiari has remained stable for the past few years.

It’s nice to be part of a group of other Chiari sufferers, as the vast majority of the people I know/meet have never heard of Chiari. Most people just think I’m a klutz who needs to pay more attention to her environment, not that I’ve got an actual medical condition and CAN’T HELP IT. I just tell people that my brain is so big and awesome my skull can’t contain it. :wink:

I wish you all luck and happiness! :slight_smile:

I love to see how positively positive you are! No one here should tell you that you have it "easy!" Any symptoms are usually bad symptoms. I would think "good" symptoms would be smelling bacon cooking or being able to fly or x-ray vision (HAHA-right!?) I have found so much comfort here in knowing that I'm not crazy! I got so tired of telling doctors my symptoms and they look at me like I'm from another planet. I know more and more people are hearing the name here in the states, but not sure if that's just my little circle because I talk about it a lot! I didn't think my symptoms were getting worse until I almost lost my job because I couldn't remember what I had done yesterday! :O. Thankfully I have an awesome employer.

Best wishes to you as well! XOXO