We heard back from the chief of neurosurgery in Boston. He let us know that his team reviewed Lucas’s situation at a conference, and he was able to clearly see the ventral cyst in the spine canal. They believed it to be an arachnoid cyst (something our neurosurgeon here was quite adamant about it not being). The Boston surgeon believed the cyst "could be seen either on a congenital basis or related to some type of focal obstruction to the flow of CSF." He didn’t believe the cyst had anything to do with the hydrocephalus (this is the first opinion we’ve heard like this, all have said it they believe it was the cause of hydrocephalus). He believed given the location of the cyst, it’s rarely the site of an infected focus, as he’s never seen that. He basically said that they leave these types of cysts alone unless they are causing symptoms or are expanding. Symptoms, in a child of Lucas’s age are difficult to "sort out — but typically there might be an increase in leg spasticity or weakness, a change in the vigorousness of leg movements, etc." He suggested Lucas be carefully followed by a neurologist and that a follow up MRI happen in three months, unless of course there are symptoms or reasons to do it before then.
This is tough because a neurosurgeon at NYU, a neurosurgeon in Cincinnati and our neurosurgeon here in TX believe it was the cause of the Hydrocephalus. All agree to watch it closely, though surgery has been suggested by the neurosurgeon here. We’re holding off for now. We’ll see what happens. We have a meeting with Lucas’s neurosurgeon here in Austin to discuss all these second opinions. And then we’ll really see where we are(or be equally conflicted). It seems there may be nor right or wrong answer.
We leave for New York next Wednesday… which makes me nervous. Just the flying, the pain of travel and packing and germs in the air. Normally, I wouldn’t think twice about such things, but after being in a hospital answering so many questions about TB, it gets me thinking differently.