Originally Posted by bigsexybrain

Hi everyone! My name is Ambyr. I'm new here, and just found out I'm a Chiarian a few months ago. I'm a 31 year old mother of 2, a computer programmer/marketing specialist, and avid geek.

I am, as mentioned, a total nerd, and when I got a strange notation on the bottom of my MRI results (“Tonsillar Ectopia with Cerebellar tonsils extending between 3mm and 4 mm below the foramen magnum” to which my doctor said was nothing to worry about), I set out to learn what it meant. I was the one that found out that means I had Chiari's Malformation, and I was the one that explained it to my doctor! Fortunately for me, I have a doc that doesn't mind learning, and we are going through this together. Not as good as if I had an expert, but that's what my neurologist is for .

After doing a CSF study, we found that I actually have a 7mm decent of the left tonsil, and 4mm of the right. I have good days, and I also have some very, very bad ones.

Since October, I've set out to become an expert on Chiari's. I've read everything I can get my hands on, started reading medical reports, papers, and case studies... online articles, and anything else I can get my hands on.

I have a whole list of symptoms which I won't bore y'all with... and my case of Chiari's is hereditary. I lost the greatest man in the world, my father, to complications with Chiari's just a year ago this past July, and it looks like at least my daughter has it, if not my son as well.

I have a blog where I try to keep up on what I'm going through, because I have found that the most comforting thing to me through this journey is not feeling alone. I keep a blog to connect with others, and hope that others can feel better by reading what I'm going through mirroring what they deal with.

My neurologist and I have elected to try medications before surgery. I've been on a med to limit the amount of CS fluid I produce since November. It's actually done a pretty good job. I'm no where near 100%, but I am much better than I was. I go back to the neuro in Feb to reassess and rediscuss the surgery. On my good days, I know I don't want it... on my bad days, I'm ready to schedule it right then. I'm pretty sure that in the end, I'm going to do it. I don't want to live with the pains, the mental problems, the limitations and fears, and I don't want to end up like my dear papa.

So that's me... my intro. I look forward to getting to know you all better!