Would love to know your symptoms

[cyberpyxi]

One of the hardest things (besides everything) about having a rare brain malformation is having these strange symptoms and feeling like you're the only one. I would really, REALLY love to hear a list of everyone's symptoms related to Chiari's. Every time I research and read symptom lists, I always find something that I didn't know was a common thread, but makes me feel less alone in this crazy thing. For example, the one that really sticks out here of late is that in one study, most people with ACM had a tendency to walk on their tip-toes when they were younger... that floored me! I was nick-named tippy when I was a kid for that very reason! And then today, I read the thread regarding "weird symptoms", and found even more things that I didn't even associate with Chiari's, but turns out, some of you have as well!
Anyways, I know I have a list a mile long of symptoms that are either Chiari's for sure, or those things that I assume are related. What are yours?

[cyberpyxi]

The scalp thing is KILLING me. I finally broke down and drove from pharmacy to pharmacy until I found tar shampoo. So far, it's working like a charm. I could actually wear my hair down today, which I normally don't do because I have flakes from scratching my head raw, and when it's down, I get that crawly feeling again from the hair moving.
Here's to hoping i have one less thing to deal with, lol

[*Stormy*]

I beginning to believe EVERYTHING is related to ACM!! It is strangely comforting in a way~ my first leg problems started in my left ankle it would go stiff and hurt a lot, that still comes and goes now... The scalp thing too, my hair always hurts!! I had that for years along with being itchy...I just can't believe how far back I am starting to track this stuff..

[selmaS]

As I read these I keep thinking I was not a toe walker, but, I did put more weight on teh balls of my feet...that is y I went to the drs in 2000...and they said I had tarsel tunnel....I had surgery to correct it...and wound up with something left inside the ankle.....but the balls of my feet were my issue...and I guess can be considered toe walking to some...but it is something that makes me curious.

[cyberpyxi]

The depth perception really bothers me. I'll be walking down the stairs, and I can see the stair is just under my foot, but it looks too far away and I stop myself so I don't fall, and almost fall in the process!
And the scalp, I have actually pulled a piece of my scalp up. I freaked out and went to my doctor. They said it was probably a fungus, so gave me meds and shampoo. When that didn't work, they actually looked at my scalp. As it turns out, I've scratched it open, and the oils irritated it... so I scratch it more. This has been going on for almost a year (maybe more, no real sense of time, lol). I've tried the strongest anti-fungal medications available, nothing. I've tried anti-fungal shampoo, no avail. I've tried Psorisis shampoo, dandruff shampoo, oily scalp shampoo... I just can't stop scratching it. and it looks like i have monster dandruff now. The doc (dermatologist) suggested I just stop scratching at it to give it time to heal. Wonderful advise... wish I would have thought of that (end sarcasm).

And I'm with you on the ankles. Up until recently I just thought I must have walked too much or worn the wrong shoes, or set on my legs the wrong way. I find it amazing that even with the Chiari's, I still don't associate many things with it. Sure, the headaches, neck pains, vision problem, and mental issues (cognition, memory, focus, etc)... but the other things, I always write off as something else.

[northernstarmn]

some of the things i had going on which surprised me were
my hair folicles actually hurt,and my scalp itched so bad i nearly scratched my scalp off...dizziness,headache,tremors,inability to find words, loss of concentration, loss of understanding, intense need for bathroom suddenly, pains EVERYWHERE, neck,shoulders,jaw,back,  tendon (ankles) issues (i read that somewhere), unsteady gate, loss of depth perseption, shaky hands, numb hands/feet, screwy eyes.
jaw pains got so bad id stop eating because of it.

i do have TMJ but didnt know it could be associated to chiari, I too was a toe walker i remember being braced as a child to stop it.

[cyberpyxi]

Yeah, that tip toe thing really hit home for me. And there have been others, like the tightness/pain in the jaw and around the ear. It doesn't matter if i have a headache or not, my jaw ALWAYS hurts, and when I'm not feeling well, my daughter knows to massage above, behind, and below the back of my ears. I had no idea that was ACM related until I found it in another article. And "intense itchiness"... I've scratched my scalp raw on many occasions because it feels like it's either tingling or crawling (to the point I had my husband check me for lice!).