Random

So, initially after my surgery I found that for a few months I could laugh, cough, sneeze, etc. without feeling as if my head was going to explode. Lately though, I can feel the headaches progressing. My eyes constantly jump around in my head, I’m restless, weak, horrible memory, having panic attacks, obviously pain, etc. etc. Honestly though, I think the most frustrating thing to me is that no one I love truly understand. Either they avoid it, talk about it as if I can fix it or idk. It is very frustrating not having anyone to talk to without them thinking you are trying to be a victim or anything. Also it makes me afraid to have children. I don’t want my children to live like this.

Sorry your symptoms are so bad after the surgery. Even though the surgery isn't a fix, keep checking up with your doctors! It's supposed to be very hard for doctors to guess how much bone to remove and whether to open dura. And that's probably not all there is. My point is- some people need more than one surgey. It may be useful to go for 2nd opinion. Maybe your doctors missed something.

As for your loved ones- try to find some resources(an article or something or make them listen to a part of some CSF.org youtube videos) that they hear or read from a medical proffesional what it means to have a chronic illness, what it means to have Chiari- it's not something that has a cure or a fix. Find something that makes them see Chiari is not a couh-like illness that can be treated by throwing medication or surgery at it. In one of the last CSF videos a doctor, Chiari specialist, was talking about how difficult and poorly understood the Chiari problem is. Try to educate them, but don't think they learn and accept it fast. Give them time and don't give up! Meanwhile, you have many understanding eyes and ears here! :) You are not alone.