Follow Up with Neurosurgeon (3rd time)

We met with the neurosurgeon this morning. As usual, they are happy to see Liam and happy to see how well he's doing, considering how much he's gone through. Liam did all the neuro exercises really well. I can really see the changes in Liam's cooperation as he approaches 5 years old. A year ago doing the neuro exercises was hit and miss. We had a resident do Liam's examination, which was really interesting for us, because the neurosurgeon (Dr Hader) and the resident discussed some details we wouldn't otherwise hear.

The conclusion is we are not doing anything about the hydrocephalus right now. If Liam starts having any symptoms from the hydrocephalus, we will have to do something. Thankfully we don't have to wait for the next 3 month MRI to measure the level of fluid. Liam will go for a "quick" MRI in early July to see where it is at. This will be a less detailed than the MRI that is looking for disease, so it's very quick and won't require sedation.

There is a chance that the fluid could stabilize and not increase, which would be great and we wouldn't have to do anything. CSF is flowing through (or he'd have much bigger problems), but the buildup shows a partial blockage is causing CSF to not fully move from the fourth ventricle through the aqueduct. Since the amount has been increasing since January, it may keep increasing.

If Liam starts getting nausea/headaches/starts walking funny, or if the next scan shows an increase, they will do something to improve the CSF flow. There are 2 options. The first option is to use a scope and create a small hole in the ventricle to allow the CSF to flow (Endoscopic Third Ventriculostomy). The other is to put in a VP shunt, which is a tube that would go from Liam's brain and drain CSF into his stomach. He said Liam is a good candidate for the Endoscopic Third Ventriculostomy. This procedure takes about 20 minutes, and is a 1-2 night hospital stay.

Both options are considered low risk, but poking holes or putting tubes into his brain are still harsh for us to hear and of course both do have risks involved. How much would we love to be worrying about summer plans and not any of this!!