i'm assuming you've read up on it, and i hate to say any of this like i know all about it. i'm NOT a doctor, but it's been explained to me like this as was what was happening with my case. i had headaches, the dizzyness, and the pressure, but none of that lead to a chiari I diagnosis. as far as the rarity of this defect, it's my understanding that not everyone with a chiari I has life-altering symptoms that lead to seeking medical help, meaning that just because you have it does not guarantee you'll get "sick". everyone's case is different, so i can only lend my experience with it and hope it may give you some insight.
my problems with having a chiari I malformation started as a sort of symptom of a symptom. explaining that at it's most basic in terms of me:
i have the chiari I malformation where the base of my cerebellum is longer/bigger than usual, and because it sticks down so far it crowds the base of my skull where the cerebral spinal fluid (csf) tries to flow around my brain, there's less space for the csf to get through, so a symptom of this is a back-up of csf in my spinal column (i believe it's termed syringomyelia).
a symptom of the build-up in my spinal column was that i experienced tingling in my side, which didn't seem really serious, just odd, sort of weird, but i wasn't having a lot of pain. i'm an athlete, so i'm kind of used to just brushing stuff off, but i went to the doctor after that seemed to spread and the tingling started to fade to a numbness. i got an mri which showed the chiari I, but that wasn't the cause for concern so much as the build up in my spine.
the build-up in my spine was what was causing the numbness in my side, and because mine seemed to be causing neural degeneration, and, i think i'm remembering this correctly, the blockage was so big/so much that had i been hit the wrong way or been jarred in just the right way i could have been paralysed (which i do not say to alarm you in any way. again, this is just my experience, and i was lead to believe it was somewhere on the more extreme side of the scale. a scale that only refers to chiari I malformations, there are chiari II's, III's, and IV's which are considerably more severe. as far as chiari malformations go it's good to be a I) it was recommended that i have surgery.
the idea was that if they make more room at the base of my brain for the csf to get through, the flow would regualte, and the blockage in my spine would resolve itself.
the surgery was very basic (as far as neurosurgeries go), not really invasive since the area of question is right there at the back of your head. they removed some bone at the base of my skull, not much, a semi-circle about the size of half a quarter, and a little of the very top of my spinal column. the incision's relatively small, maybe 3 inches, at least as far as i can tell, it's a bit hard for me to see the back of my head! i was only in the hospital for 2 days, and as soon as i proved to them i could walk and everything, they sent me home. my neck was sore for a few weeks while the incision healed, but that was the worst.
i got an mri a few weeks later, and since everything looked okay he cleared me to play ball again.
i was 17 when all this happened, i'm 21 now. i've since started having the symptoms again. whether i just wanted to believe it at the time or i was lead to it i don't know, but i assumed the surgery was a quick fix and that afterwards it would never be a problem again. whatever's going on with me now could be something, or it could be nothing; i won't really know until i go see the doctor again (which i plan to do as soon as i can), but my point is that some people do get a quick fix; they have the surgery (if it seems their condition warrants it), and symptoms go away, but it's not a guarantee. i think in my case i'll have to just get regualr mri's (something i've failed to do since my surgery cause i didn't think i needed it), and make sure that no more problems arise.
do your own research, but make sure you understand what you're reading, so ask doctors, plural, get more than one opinion, as to what your symptoms may mean. again, i'm NOT any sort of expert on this subject, but some of the questions you have i've already had to ask. do you understand what exactly you were told? after you've had time to deal with it go try and talk to the dr again. i think if you've had these symptoms this long the mri's are maybe just a precaution.
i'm not sure of the quality of the hospital you went to, but i'd suggest doing some research about the best one in the area (just how broad the area is up to you). it shouldn't be hard, the goods ones usually want to let you know it, and usually just word of mouth. check the neurological staff, the way i figure it the more they have on staff for a certain area, i.e. neurology, the more specialized the staff is, so you may find someone who's had experience in chiari malformations. in my experience, if you know your stuff it takes away a lot of the what if's my crazy imagination likes to come up with. that might help you can understand your fear a lot more and come to terms with it.
here's a good starting point: http://conquerchiari.org/index.htm
i really wish you the best and hope some of this can help.
BTW, I had it done at Duke.
But seriously I've just turned 20 had no symptoms ever but a week after my birthday I just got very sick and we decided I should see a doctor I had been vomitting heavily was very unstable and dizzy and my left arm was numb like as if you woke up having slept on it all night etc.
Anyway what started out as a possible ear infection turned out to be a Chiari Type 1 malformation so the friday of that week I had surgery to be honest I was not worried at all because the way I saw it was I wanted fixing as soon as possible by any means and this was it.
So it's been a month and 3 days since the surgery and i'm better but still not uber (great/excellent).
At this moment I still have double vision although very mild and it's not quite double it's more like stacked e.g if I look at someone out the corner of my left eye they appear to have a overlapping ghost coming out of them so another set of eyes in their forhead etc.
I'm wearing an eye patch over my left eye and my only concern is people don't go look that poor young man has lost an eye lol.
I also still have a numbness in my left arm though I'm not having spasmodic movements out of my control like I had before surgery.
I'm holding my food down more consistently but I still occasionally feel ill especially when I get hiccups which were painful at first but milder now.
I have a long way to go retraining my body and getting my balance back etc but I'm looking at the positives.
Parents at beck and call
Lots of lazing around in bed
Playing video games
watching tv and movies
Lots of tasty snacks and treats
No work or lectures
so it's not all bad your daughter shoul be looking forward to it lol as for the hair thing there is no reason why they would shave it all off if anything wear it up then after where it down to cover it.
There is basicly nothing to cover anyway my hair has almost grown over the area completely (I had it cut relatively short days before I became ill)
As for the soccer thing firstly it is called football :p you cannot take an existing sport and change the name even if you already have a sport you call football which is actually a wussier version of another sport called rugby lol you americans and your name changes.
Seriously though she will be able to play again I would think though I myself get tired easily at the moment that will pass as I move around more and get my strength back.
I am a 20 y/o female. I have been recently told that I have a Chiari 1 malformation. Since I got my results, i have no been able to get in to speak with my neurologist, so I dont really have a lot of information. All i have so far is what I can gather from the internet and these pots. I am very scared! for the past few months I have been having horrible pain/pressure in my ears/jaw/face and non stop pressure under my chin and in my throat. The Chiari was found by accident while trying to figure out all of these problems. Do these symptoms soundl ike they would be coming from the Chiari? Also, I am a atv/dirtbike racer. I am afraid that this disease may put a stop to my racing... does anyone know.. do physical activities affect the Chiari? Am i thinking too far ahead? I would really appreciate someone giving me answers if you have any. I am waiting to see the neuro but i really dont like waiting! especially now!
Thanks to anyone who responds!