18 month old- Is surgery the answer?

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!

Thank you! I'm looking forward to making some connections and getting some input. It looks like a great community here. Much busier than I would have expected!

Abby said:

You might want to talk with Lilyannes Mom. She has a lot of input for you.

this is very common! Some other things to watch for are when she is crying does she arch her back, and clumsyness. the clumsy part has to do with balance. Lily was 17 months when she had her first decompression surgery and she did amazing from it. She did have to have a second one 6 months later, which isn't uncommon but I also wouldn't say is common either. Also, Lily's malformation wasn't huge by any means, but her symptoms were. Things I didn't even known were important when I was describing how she acted to our NS we found out were very important that was the reasoning for her surgery. Today, while by no means are we perfect, she is done with surgeries, and she has a much better quality of life. Lily even took Dance class. If you have ANY questions go to my page and send me a message they go straight to my phone and I will get back to as soon as possible. God Bless!!