My name is Caitlyn, I am 17 years old. I was diagnosed with Chiari Malformation Type 1 on December 1, 2015. So really recently… I am a junior in high school and I have gotten headaches since I was in 6th grade. Every time I laugh or cough. It sucks. The first two weeks of June, I started getting really bad migraines. My mum and I tried everything and they wouldn’t go away. A migraine for two straight weeks. We ended up going to the Emergency Room, where I stayed all day. They did a CAT scan but found nothing. They never found a cause for my migraines. In the beginning of October, I started getting more headaches. Every day. I finally saw a neurologist, who had me do an MRI. They discovered that I had Chiari Malformation Type 1. That would explain my headaches when I laugh/cough. We are seeing a neurosurgeon on the 15th to talk about whether I should get surgery or not. My headaches have been getting worse and worse and I don’t know what to do. I was told not to take pain killers because they are tearing up my stomach and causing stomach pains. Can anyone who has had any surgery to “fix” type 1 tell me anything about the surgery? I’ve been googling it for days but I would love someone’s opinions on it…
The biggest thing I can say is relax and if you are an information person ask questions and ask as many as you want who cares how long his appointments are meant to be. It is in your best interest to learn as much as you can and I mean just ask for anything you can think of. If you are however like myself you will not want to know a thing about any of what is about to happen to you. I was a happy mushroom and even put my fingers in my ears the day of Surgery so they could not tell me what they planned to do. I am not sure if my banging my head real hard after surgery did it or something went wrong otherwise but I had surgery on June 10, 2014. From June until Oct I was feeling better I was not having headaches that I could call headaches some small head pains but nothing real bad. I started the day I got out of ICU working my neck and was excused from PT because I had better range then the instructor. But if your headaches are getting worse I would think long and hard about having it done especially since you are only a Jr in High School. I am an old man and I had it done so feel free to ask me anything but will tell you ahead of time that I have a very high tolerance for pain since I had Chiari so long.
I am by the way Ron
Hi, Caitlyn! I have not had surgery, but I think I've found a great source of info about chiari. https://www.youtube.com/user/CSFinfo2007/videos Check it out! if you have the patience, you can maybe find some answers or at least ideas about what to ask your doctors.