So I didn't really explain what Chiari 1 is and while I won't go into all the specifics, it's basically where the cerebellum droops down into your brain stem. The length of the herniation ( drooping) is not necessarily congruent with symptoms. Someone can have a very mild Chiari such as a 1-2mm herniation and have multiple symptoms and some have a herniation in the double digits and feel nothing. Mine is a 6mm herniation with multiple symptoms.

To give you an idea what it's like to have a crowded hindbrain picture this. You're normally a size 10 in jeans, but you find a really awesome pair in a size 6 so you lay on the bed suck in your gut pull them on, bend, squat and mange to get them zipped and buttoned. Then you put on the perfect shirt to cover the muffin top of belly flesh you just created. It's tight, uncomfortable and painful but worth it because at the end of the day you can take off those too tight pants and slip into sweats.

With Chiari it's the brain overcrowding the base of your skull and there is no sweatpants at the end of the day. As I said some people never know they have Chiari or they have it but either believe when their doctor says it's nothing to worry about or have no adverse effects. For those of us who are symptomatic it's an every day fight to function in those too tight jeans and to remind people we didn't choose to put them on. Yes this is real and yes it hurts, and yes it hurts all day every day. No you can't see my hurt and no there isn't a quick fix. I could live on narcotics sure, but really what kind of life is that. Yes I could find a drug regimen that works and probably will but it's a band aid at best. Chiar isn't "curable" it isn't truly fixable. You can have decompression surgery, which is removing part of your skull to make room for your droopy brain. But it doesn't "fix" Chiari and you aren't necessarily better afterwards. Some symptoms might be better but it isn't the be all end all, just ask any zipperhead.

Zipperhead? look up Chiari scars and you'll understand, while being simultaneously terrified. Chairi is not for the weak. If the jeans analogy wasn't enough imagine having a c-clamp on the base of your head every day. Some jerk gets to decide when to tighten and relax it, but it's always there . That is Chiari, when I say I have a headache I mean every day all day. No breaks for me. The list of activities I shouldn't do is crazy I do them anyways and pay for them but that is real life.

The worst thing you can do for someone with Chiari is pity them. You can sympathize, and possibly empathize but don't pity anyone with Chiari. We've got enough to worry about. ;)