Chiari Type 1 Advice?

[ZL9685]

Hi,
I suppose first off I should mention that I am in New Zealand, 18 years old, and as far as my mother and I can tell, there is no Chiari specialist here. A few years back (6, I think) I had an MRI and the head Neurosurgeon diagnosed me with Chiari Type 1. He mentioned that as I also have a slightly twisted spine and feet issues (high arches), it was most likely all related to an unknown syndrome.  Having read through the forums, there are many things here I have never heard of before, such as to avoid rollercoasters. The only thing I was told to do was to avoid chiropractors and sports such as rugby. Due to moving away from the neurologists that know anything about Chiari, I have started wearing a medic alert bracelet saying "No handling back of head and neck". I do have a few questions -
What should I avoid?
Does anyone know of a Chiari Specialist in my area?
And, When I get tired or really stressed, my hands shake and my eyes twitch. Is this related? (Does anyone else get this?)

Thanks.

[ZL9685]

I don't know, but that's what we were told, that I didn't need another unless any new symptoms came about. I've been seeing another neurologist, but no-one mentioned needing another MRI so I think things are just being left unless they get worse.

Penguins57 - Thanks for the advice. I'm lucky in that I've never had a headache in my life, we always passed this off as a good symptom of my Chiari, but it may not be.

[Penguins57]

I'm 16 and have chiari. some things I try to avoid is definitely roller coasters that are rough or jerk u around a lot. the less violent ones aren't that bad...depending on ur type of chiari...something else is to look into different wayys of sleeping. I found out tht the way I was sleeping made my headaches worse so I had to get a special pillow to adjust my head and neck just right while i slept. Hope this helps. Good Luck.!

[selmaS]

If u have ne changes u should have one done...by changes I mean in symptoms....so, I have no idea y they would not want to monitor u...unless everything is the same...symptoms and the status of ur chiari, but how would they know if it was 6 yrs ago?

"selma"

[ZL9685]

Thanks for all the advice! I was told I don't need to see the neurologist anymore unless things change, and my last MRI was 6 years ago, so I think for now we are basically just not doing anything unless things get worse.
- Dana

[n40066]

welcome to our family!  before i had my surgery, i had multiple symptoms, including twitches and shaking hands.  after surgery, most of my symptoms went away until i was rear ended in a mva.  the twitching has returned, but is mostly involved with my lips.  so in answer to your question, yes!  it can and most often is related!  this is a symptom of brainstem compression....which is directly caused by your chiari malformation.  cm is actually the malformation of your skull...in a nutshell, your base of your skull, at the foramen magnum, is too small.  because of this, the bottom portion of your cerebellum, the cerebral tonsils, have been forced out of your skull and into your spinal canal.  this can cause the restriction of csf and a lot of different symptoms.  because it is so crowded inside your skull, it also caused compression of your brainstem that causes many symptoms as well.  if left untreated for too long, it can cause a syrinx to develop and permanent nerve damage.
i hope you can find a cm specialist soon and get the care you need!  good luck!
elizabeth