Today we went to a follow up appointment with Scarlett's neurosurgeon. After last weekend's wild ride, we were a tad nervous about what he might say. After an annoying scheduling mix-up, we got her quick-scan MRI (only takes 5 minutes, requires no sedation, a parent can stay with her, and no radiation exposure like CTs...the fancy pants at Stanford don't have one!) and headed up to the clinic.
The physician's assistant, who has seen Scarlett at every visit, took the basic details, and then, after a quick look at her, he said, "I just don't know. I think we just need the doctor to come in and decide." Hmm.
At this hospital, this surgeon is the top of the food chain. Even his office is on the top floor. No one makes any decisions that might compromise his patients...and Scarlett is one of his pet projects, I think. Understandably: he has spent more than 30 hours in her brain. He saved her life. It's his turf.
When the surgeon came in, he told us that he feels this shunt is not working properly. After the pretty major change he made to the adjustable setting last Friday, there has been almost no change. True, Scarlett seems to feel better. She is not throwing up, is going to bed without a screaming fight (something we had never struggled with until last week) and seems to be in a better mood most of the time. However, the bubble on her head is still just as massive as it was last week. Her fluid-filled ventricles are just as enlarged. Something is just not right.
I am no brain surgeon (obviously!). I don't understand the intricacies of how shunts work, why they don't seem to be very reliable, and why Scarlett's little brain is so difficult to properly regulate. He showed us two images side-by-side to help illustrate the problem: on the left, we saw an older image, where it looked like a third of her brain (the tumor) has been scooped out with a spoon; all the fluid was accumulated in one large space (which later allowed the bones to collapse). On the right, we saw her most current imaging, which showed a few smaller spaces, divided by thin lines (membrane of some kind, I think), as the fluid has redistributed itself. The shunt glows bright in the MRI images, and we could see in the first image it was placed in the big fluid space, but was now in a smaller space. With all the changes her brain has made since the first shunt was placed, the catheter was no longer in the most effective space. Or at least that's what I took away from it all.
He then said something very enticing. Scarlett may not need this shunt. She may not need any shunt. Her brain is showing that it is reabsorbing the vast majority of fluid on its own. Really??? You mean she could be a completely medical device-free kid eventually? I wish I could do something to make this a reality, but it's up to her brain to do the hard work and manage itself.