“So umm… how exactly are you disabled?”

In this blog so far I’ve explained a lot about the technical details of what a Chiari is and how it is diagnosed, but I haven’t yet described exactly what it’s like to live with day to day and how it disables me. To be truthful, I’ve been avoiding the subject, as it’s something I’ve … Continue reading

Under the Chiari

So far, all I’ve done in this blog is rant about the story behind my illness and how it affects me, but believe it or not there is a person under all of this medical drama. I’d like to take the time to write a little bit about who I am, what I’ve done with … Continue reading

Diagnosis Nightmare: final chapter

(Forgive how long this is!) After a long and painful few years of attempting to get neurologists to understand my symptoms, I’d all but given up on finding any treatment for my disability. It seemed that no matter how hard my family and I tried to insist that these problems were severely disabling, no doctor … Continue reading

Diagnosis Nightmare: chapter three

Phew! Things have been pretty hectic and I haven’t had much time to post, but now that I have a moment… on with the story! Where we left off, I believe I had just finished seeing my second neurologist, who had once again given me the verdict that my Chiari was not serious and that … Continue reading

One month today

Forgive my lack of posting, it’s pretty busy around here at the moment and my health isn’t treating me too kindly either, so I’m not quite with it enough to continue the epic diagnosis story in any coherent form. Today marks one month before I go into hospital. I’m still not sure whether I’m terrified … Continue reading

Diagnosis Nightmare: chapter two.

So, where we had left off last time, I had just been diagnosed somewhat clumsily with a Chiari malformation but had been sent off and told to go visit a psychiatrist for the majority of my symptoms. Well, instead of doing that we went to another neurologist for a second opinion. This one ran his … Continue reading

Diagnosis Nightmare: chapter one.

Have you seen the TV show “House”? It’s good, I recommend it. In it, a team of doctors work to diagnose difficult cases admitted to a teaching hospital in New Jersey. The doctors can be cold, standoffish, blunt and borderline irresponsible, but they always get the job done and try their hardest to solve the … Continue reading

Show and Tell

Today I managed to get my hands on a digital copy of my CSF flow MRI (that means a scan of my noggin). The first time I looked at an MRI of my own brain I honestly felt a little nauseated, but now I actually find it pretty cool so I thought I’d share some … Continue reading

WTF is Chiari?

That’s a damn good question! Hi everyone, my name is Ella, and I was born with a somewhat rare brain condition called Chiari type I malformation. Unless you’ve known someone personally affected by it, there’s a good chance you’ve never heard of this problem. As my brain surgery date looms ahead of me, I’ve decided … Continue reading