Neurosurgeon update

Emily had her appointment today with her neurosurgeon. I've just got to say how much I love this doctor. When she first came in to talk to us, she sat down and talked to Emily for a little bit. She asked her about school and other things in her life, and she was just trying to get a general idea of how Emily was doing neurologically. She did her usual tests on her where she holds her head steady and has her look side to side and up and down. She makes her hold her arms out in front of her with her palms up and then she has to take each index finger and touch her nose. It is kind of like watching a sobriety check on my six year old. Ha-ha!

The doctor and I talked for a while about Emily's symptoms and when they started and what they are like. She asked Emily about her headaches and how if feels when she lays down compared to being upright. One thing the doctor told me is that it doesn't sound at all like her shunt is malfunctioning. She did say, however, that it is possible that we are dealing with an overdrainage issue (which is what I have suspected is going on). The one thing she told me is that there is no way that she can know how to treat her without really getting some definitive test results on a few things.

First and foremost is to have Emily have an MRI. She said that she wants to do this for a couple of reasons. She needs to make sure that physiologically everything is like it should be in her brain. Plus, she also wants to check on her Chiari and an MRI is the only way to do that. Getting an MRI isn't a simple thing. It will mean going under general anesthesia, getting an IV, being intubated, and all of the other downsides of an outpatient type of surgery.

The next thing on her list for Emily is an EEG. This is used to record the electrical activity in the brain (to make sure that the neurons are firing appropriately in her brain). One thing that she is trying to rule out is if these headaches that Emily gets are mini seizures.

The doctor also wants a complete blood workup done. I did ask her, though, if this can be done at the same time as the MRI. They should be able to draw her blood at the same time that they give her the IV. I don't want her to have anymore sticks than is necessary. The doctor said that she understood and that she would make sure that this happened.

And last on the list is for Emily to get a endocrine consult. I talked to the doctor about Emily's lack of thirst and minimal fluid intake. I told her that Emily stays right on the edge of dehydration all the time and I worried that that could also have an impact on the CSF in her brain, and thus the shunt overdraining. The doctor was very concerned about the drinking issue and wants her to see an endocrinologist.

Hopefully we'll have all of these tests back in the next few weeks and then the doctor will know how to treat Emily best. In the meantime, she said that it appears as if Emily is healthy and happy when her head is not hurting her. She said to just continue to have Emily deal with her headaches the way she has been (laying down when necessary) until we can get to the bottom of this. I love the fact that the doctor is being conservative and wanting to know what is REALLY going on before jumping the gun to try and treat her.