Wanted to seek the groups thoughts on the childhood brain pressure, dysautonomia, EDS connection. Tried to understand the Driscoll theory but it was a bit above me. Well, anyhow, if I don’t have EDS, I definitely have JHS and a whole host of other things that Dr. Dianna talks about (http://prettyill.com/forums/viewthread/108/). What I am curious about is a childhood disorder and how it may have interacted in sort of a Driscoll theory way. At birth, I had a large hemagioma that attached itself to the optic nerve behind my left eye. It presented as a “strawberry mark” on my forehead. Over the first 6 years of childhood, the hemangioma receded. Unfortunately, it trashed the vision in my right eye (brain and eye don’t play nicely in the sandbox). As such, I am non-correctable double ambliopic. What I am curious about is whether the hemangioma could have created other long term symptoms from which I now suffer.
Oh, I’m so sorry you went through that! Your docs will know to watch for glaucoma in that eye, but I’m not sure why your other eye is amblyopic, also… Have you had an MRI? Some conservative docs will want to be sure you don’t have any of these vascular growths inside your skull. That can cause some problems, including seizures. Did you get the “all clear” for that?