Hello everyone!
I'm new to the forum and to anything Chiari, so I'll ask for patience in advance, if I'm asking questions I should already know the answer to!
My daughter, River, was born in February, 2011. In March, 2012, she was diagnosed with a type 2 chiari (14 mm) as a result of an MRI for routine screening for a genetic disorder running in my family (unrelated). They discovered the Chiari as well as a cyst in her throat. At the time, she didn't seem to suffer any symptoms that I could identify. Shortly after (about a month), she started having what I can only assume are headaches. She wakes up in the night or during naptime screaming and hurting. She isn't teething and hasn't had any ear infections. I was worried about telling the neurosurgeon because I didn't want to seem dramatic- it happening so soon after diagnosis- but I sent him an email and he asked to see up asap. Our appointment went well. He suggested getting another MRI in a couple months (it will only have been about 6 months since the last). If there is anything more serious showing than in the last, he suggests surgery. If not, we will see other specialist to rule out any other problems and then consider surgery. I guess its harder with a baby because they can't localize their pain (or communicate any details!)
I guess my question is, has anyone had issues that worsened or changed so quickly? Has anyone had their child undergo the decompression surgery so young? Are headaches enough reason for the doctor to consider operating, if no other problems show on the MRI? I see her suffering and of course I'd like nothing more for it to stop- but surgery is a big deal and there is a lot to consider. She is also scheduled for surgery of her cyst over the winter0- will swelling in her throat affect her headaches? (I'm thinking any swelling would aggrevate the tightness of the Chiari?)
I'm looking forward to hearing anyone's two cents. Thank you!