I just recently was diagnosed with chiari one as well, but I've had migraines all my life. I've started having other symptoms now, as well. It sounds like yours are more severe, but from what I've learned about the decompression surgery, it sounds like a pretty good option. I talked to a neurophysiologist locally and he said as least technically it's not super intricate--of course, you want the best possible surgeon you can get, and it is serious
. There are a couple (that I know of ) of Chiari Institutes, one in Great Neck New York (Long Island) and one in Milwaukee, WI. I Know the New York Institute takes a few months to get in, but I'm sure either place would be great.
I have three boys. I'm single, too! (newly) You're not alone! I'm new to this, too. New to Chiari and new to writing on a site like this. I'd be really interested in hearing how you're doing. I'm not sure what I'm going to do, either. I get mixed messages from people. The neurosurgeon said I was a good candidate for the surgery, then my neurologist said I should get a second opinion! what I want to know is, if I've had headaches all my life, and I'm starting to show other symptoms as well, and likely they'll get worse, what would the benefit be of waiting for surgery? Any thoughts? The idea of getting rid of my headaches sounds blissful.
good luck.
Quote:
Originally Posted by reeseszverra
I've never used a site like this so I don't even know if this is the right place to say hey. I have recently been diagnosed with Arnold-Chiaris Type 1 Malformation. I have to say that I am scared to death. I'm a single mom with three kids who depend on me for everything and I don't know what to expect. I am looking for people who have been through something like this or who are currently going through it. I'm pretty sure I have to have surgery but I don't see the neurosurgeon until tomorrow. I'm really scared. My father had Multiple Sclerosis and I was 10 when he was diagnosed. It got really bad really fast and we watched him slowly waste away for 16 years before God finally gave him relief. My biggest fear is that my kids will say that about me one day. They are smart, funny, crazy kids and they don't deserve to have to go through that. Because I have no idea what to expect, I am very anxious and intimidated by this situation. Does anyone have any good advice for someone who can't afford to be sick in any way? My symptoms are pretty bad right now although, thank God, I don't have any paralysis yet. But I can't pick up my kids or cuddle up in my boyfriends arms for comfort. Everything I do gives me a headache. I'm really scared and looking for friends. I hope I can find some on this site. Thanks and can't wait to meet some of you.
Reese
|