Well where to start. I was recently diagnosised with arnold chiari malformation and wanted to know if anyone has any advice on it. I suffer with really bad headaches everyday. Coughing and bending over makes it worse. I work full time so i cant take anything that will make me sleepy or more dizzy then i am. Also if you know if a car accident could have made it worse. Thanks inadvance for all the help you will give me.
My daughter had Type II Arnold Chiari Malformation (I'm assuming you are also Type II) and she had surgery to widen the existing opening at the base of the skull. She is asymptomatic now and I'm so glad we did the surgery. It's not dangerous but if the headaches bother you and you feel it is debilitating, the surgery is a good option.
If you live in the LA or surrounding areas I have someone who might be able to help you. Email me back if you are interested
I think Chiari Malformation can run in families. At least, I know a man with 5 kids and he and all of his children have it. He was not aware that Chiari can be hereditary when he was first diagnosed, and didn't realize that his children should be checked out for it as well. He ended up losing one of his sons (age 4) to the disease as a result. So my advice is to have your children seen by a doctor as well in order to make sure they don't have it too.
My good friend's daughter just had the corrective surgery for it 2 years ago.
(She had the kind where parts of her skull were ground down to make more room for her brain, and then a skin "sling" was made that holds her brain upward even more. The "sling" also protects her brain from smacking into her skull during trauma.)
She's doing FANTASTIC. No killer headaches at ALL for the past 2 years, and only a couple normal ones. From an aesthetic point of view, the scar is under her hair (only had to shave a few inches.) Quick recovery time.
And yes. A car accident could *absolutely* make it worse. Much much worse. It wouldn't necessarily make it worse, but it very easily could.
I've been told I may have a mild form of it (for now, could get worse). Since it's a huge trigger for migraines, it'll probably become a much more common diagnosis in the coming years.
R
