Although I am still in the process of getting a diagnosis, given that my MRI 6 years ago showed low-lying cerebellar tonsils, I'm pretty convinced I have Chiari 1 or at least, a symptomatic type 0. As I've been researching, I've come across some conflicting information and I'm currently just trying to absorb as much as I can. Hopefully you guys could clarify some things?
1. Is Chiari progressive or not? I have read that it is and that it is not and I'm not sure what to believe. If it's not progressive, how come the symptoms get worse over time? Why would doctors just watch and wait then?
2. I noticed a lot of people have issues with not getting enough sleep. Is anyone like me, where they need excessive amounts of sleep (10-12 hours a night) to function? And still suffer from crazy fatigue during the day?
3. Is it normal for symptoms to feel better when lying down? Sometimes it's the only time I have relief from the dizziness, blurred vision/focusing problems, headaches, but it also enhances the tinnitus.
4. Is it normal to have days that are worse then others? Or should the symptoms be consistent and daily? For instance, I have very bad days where I can barely get out of bed, and when I do, I'm so dizzy I can't walk a straight line, I can barely see anything, etc. But then I can (mostly) function on other days.
5. Is it normal for the headaches to not be the worst symptom? I have issues with fatigue, vertigo, eye problems (focusing, pupil dilation, photophobia, floaters, blurred vision), major cognitive problems with memory loss and slurring/stuttering speech and word retrieval, tremors, neck/ear pain, numbness/tingling, etc. I do have headaches that consist of dull pressure in the back of my head but they are tolerable (most of the time - sometimes they get bad and shoot forward like a tension headache or behind my eyes).
6. I don't even know if surgery is an option in my case, but I'm trying to collect as much information as I can. So I ask - is surgery ever successful in treating fatigue? I've read stories where it helps with dizziness and such, but the fatigue combined with everything else is life-ruining.
7. Is surgery more successful at a younger age? I'll be 21 in a few weeks, been symptomatic for at least 6 years. Is there a chance it would work for me?
Any advice/answers would be greatly appreciated. You guys rock!