So I just got back from the center and I have Chiari Type I.
He said the average Chiari patient has a growth of about 4mm, and mine is 14mm, which he had never seen before?!
So they are sending me to a professor at Harvard Medical School for experiments because apparently it is very rare for one that large?
The surgery to fix it has only been done about 400 times worldwide so I'm kind of nervous.
Does anyone know of anybody that has had this? Or anything?
I was not expecting this news today, I can tell you that!

oh wow.

i had never heard of that before, so i just looked it up - sounds weird, like you have a bad case of the least-bad type, which is... confusing. so were you having symptoms?

good luck, and tell more when you know more.

Yeah I know, its weird how its only Type I, but it is considered "extremely severe" because of the depth and length and I don't have the compression under my skull. My fluids are still flowing somehow.

They told me I was born with it, but they think my car accident in January stirred it up and made it begin 'functioning'.
I was struck in the head in the accident, so all of my problems are linking to this. They said theyre not 100% POSITIVE that those symptoms are because of the accident, but thats their only logical explanation.

Apparently they don't know much about the one I have. Thats why theyre sending me to Harvard for testing and study.

I'll know more Sunday, because I have to have an MRI on my neck to see if anything's seeped lower than they thought. Thanks a bunch though, really.

"This treatment is well recognized and accepted with many studies published (involving a total of hundreds of patients) in well-respected peer-reviewed medical journals showing that about 80% of patients obtain improvement." -Wiki

Good thing! And since it's a class I the chances are better? Crossed fingers.

__________________

Breathe in, come out

Yikes! I really hope it works for you. It sounds like they know what they're on about. It'd be nice if your post-crash symptoms could be surgically removed!

__________________

Wow, that's no fun

I hope everything goes well for you!

Keep us updated, you're a very sweet girl.

__________________

Wow. I could imagine how scared you are. I hope everything will work out and you're okay. Stay strong! And yes, keep us updated.

I don't know what to say, other than good luck with the (inevitable) surgery.

Wow, that is pretty scary stuff. No one wants brain surgery! But at least it is a benign growth. Good luck with the surgery!

The Chiari Institute - North Shore-Long Island Jewish Health System - Welcome

i didnt know there was a whole institute dedicated to chiari.

insomnia is right no one wants brain surgery, but i have cared for a few of these patients who have had surgery to correct the condition and numerous who were dx with the condition but no surgery was necessary, and i haven;t seen complications. i'm glad that you're going to harvard to have this checked out. are you having trouble walking or just headaches?

__________________
When I awoke, the Dire Wolf
Six hundred pounds of sin
Was grinning at my window
All I said was "Come on in".
Grateful Dead

Well prior to them discovering the disease, they found that my responses to moving the left side of my body was slower than my right. (Thats the reason I was sent for the CT scan and MRI, where they found it) I also get extreeeeeme numbness/tingling all the way up my arm and throughout my fingers so they have to poke me with little needles.
I get headaches, but only these like 10 minute violent ones that happen after I bend a certain way, or try lifting something heavy.
Then apparently somehow my memory problems and depression are involved...but I dont really get how.