Well, this is my first attempt at blogging. Heaven help us all!! We just got back from our visit to Dr. Fraser Henderson in Chevy Chase, MD. We went to see him so that he could check out Haley to see if she has a chiari malformation. It was an overnight trip that involved a special MRI and a hotel stay complete with "average" Chinese takeout. When we saw Dr. Henderson, we were shocked to learn that there is an abnormality involving Haley's brainstem. It seems that instead of her head tilting like normal heads, hers slides. This is absolutely NOT normal. Also the hole in her skull where her spine attaches (called the Foramen Magnum for all you student-types) is too small (or stenosed). When she moves her head certain ways, he thinks it kinks her brainstem. On the MRI, he showed us that the angles were too sharp to be normal. This could be responsible for her headaches and fainting as well as her vomiting and many of her other symptoms!! Wow. We didn't see that one coming.
We both thought that he would say that she has a messed up neck and tight muscles that contribute to her headaches, but never did we think there was a malformation. He also thinks she has a connective tissue problem like Ehlers Danlos Syndrome.
So for now she is to wear a hard neck collar as much as possible to see if it improves the symptoms. She is also supposed to see an eye doctor in Maryland and a geneticist, also up there. She needs to have a CT scan of her neck and head and some bloodwork done. After all of that, Dr. Henderson will see her again. He is a neurosurgeon, and he said this is correctable with surgery, but, of course, that has not been scheduled yet.
So how does it feel to have a possible answer after more than eleven years? Right now we are numb. She called a mentor/friend and told him and he said it well..."Good news with a side of scary."
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