Hi there,

I am new here and I have a daughter with hydrocephalus. She is now five and had her VP shunt fitted at four months. We are very fortunate to have had no issues with her shunt since it was fitted.

We are visiting a new surgeon in two weeks for her annual review (original surgeon retired).

I am wondering about some vague symptoms she is having and wondered if any of you might have some thoughts. She falls over a lot, she is a bit uncoordinated, but not so terribly that it requires intervention. She is bright and doing well at school. She recently got glasses and that seems to have solved the headaches she was having, so we think that was eyes related rather than shunt related.

I have noticed recently that her eyes look weird, as if they are beginning to sink into her skull, in a downwards direction. I am hoping that I might have some suggestions from any of you as to what this might be caused by so that I might have some terminology to use with the surgeon. We have to travel a six hour round trip to see him, so I want to make sure we get some answers.

So, is this eye thing a 'thing'? My other kids do not have the eye thing, it isn't typical of our family's face shape. Could it be that her shunt works too well, so to speak, and she now has too little fluid?

I don't want to mess with things since we really aren't having any significant issues as such and when we last saw this guy (thinking he was a fill in) he seemed very gung-ho wanting talking about fluid studies etc, but I don't want to not mention this eye issue and then find out it was a problem and it has been left too late.