Hello everyone,
Wanted to let you know we saw the specialist last week and she has ordered a "full MRI for Chiari" which I guess means something like 3 hours under general anesthesia and they do flexion and extension. We also have an apt in a special clinic called "Brain Injury Clinic" because she has had 3 concussions in 6 months. The surgeon said that her Chiari measures approx. 7-8 during the regular MRI and it may drop a lot more with flexion or extension.
They did start her on amitriptyline at night to help with sleep and the headaches. It seems to help some.
She has headaches daily, dizziness worse first thing in the morning which the doctor said made sense as she is increasing her ICP while sleeping and cutting off flow.
School is being great about this but we go to a private school. They are listening and letting my daughter advocate for herself. At 16.5 years I think that is great. But they are also watching for her to look like something is bothering her because she will just keep going until it gets so bad she has to vomit. Trying to get her to realize if she takes a few minutes when it starts she can maybe keep it at bay.
Thank you everyone for all your support! We have a long way to go.
Kari