First of all, take a deep breath. I remember so well how scary this is. My daughter, now 11, was diagnosed at age 4 with Chiari I malformation and associated thoracic syrinx. Her spine looked like it had sausages in it. Her tonsil desent was 8-9mm. Just after her 5th birthday she had the decompression surgery. She went to church the day before she checked into the hospital and she was back in church the next Sunday! Amazing. The surgery went very well and just last December (07) she went in for her regular check up and is completely recovered. No syrinx whatsoever. She has had an MRI every 2 years and we have watched it shrinking over the years. It was really gone after 3 years, but we still have her checked, especially if she starts having headaches again.

All your symptoms indicate Chiari- but just remember I am no doctor. They are very familiar symptoms to me. I would be so frustrated if I had to go through another surgery after what you have already been through, but it does not get better on its own. Go on-line and find out as much as you can. Take your health into your own hands and ask for what you think you might need. Make the doctor explain in detail what the MRI indicates and what it means and what needs to be done. Tell him to use English so you can understand! The best way to conquer fear is to educate yourself so that you know what is going on and are not just the body everyone is operating on, you know?

The University of Washington has a good website on chiari, but I'm not allowed to post links yet. Try Googling Dr. Ellenbogen, who is the head neurosurgeon and who did Emily's surgery.
Hope that helps,
Deb