The Craniofacial Surgeon Report

For this latest stage in the cranio journey, we had visited with one of Simon's original neurosurgeons to bring up the concerns, and we ended up seeing the craniofacial surgeon that is now on that team. Both surgeons want to cover the holes in Simon's head, but they had differing opinions on what materials to use. The craniofacial surgeon talked about using a bone material consisting of bone chips, and the neurosurgeon talked about using a bone graft. Both talked about doing it this summer.

Last Friday, we visited Simon's original craniofacial surgeon, and she concurred with the neurosurgeon on doing a bone graft this summer. In Simon's case, it will likely be best to go in expecting to do a bone graft but also being prepared to use titanium mesh. For the last surgery, not enough bone could be harvested for a full cover, and nothing guarantees that enough bone will be available this time around either. The titanium mesh will cover and protect, whether or not there is enough bone.

I asked about why we would do this versus bone material or PEEK implants. If Simon's holes were bigger, we would have to consider implants, as the titanium would bow in the middle. Since the holes are smaller, we can use the titanium, which has been in use for many years and has an excellent track record. Plus, the titanium is tough and durable to protect his brain. The implants have risks into adulthood, including the possibility of coming loose. The titanium doesn't carry the same risks. We will avoid the bone material/bone paste, because it did not stick when used in the last surgery.

Another question I asked is why should we bother to do this at all? Why not just continue to wait and see? More than likely, the holes will continue to grow, and the opening on the right is a safety issue. This summer is a good time to get it done. He needs a good 6 weeks to fully recover and stay away from the germ-infested kids at school, and he needs to have that noggin in good shape as he gets old enough to do more physical activities.

During the visit, the CT scan disk would not cooperate in the office computer. So, I figured it out at home a few days later and sent the pictures to the craniofacial surgeon. Her response, although not entirely unexpected, still felt like a punch in the gut. From those pictures, she could see that the holes have definitely gotten bigger. She sees two things that need to happen: 1. The holes need to be covered; 2. We need to find out why they are getting bigger like that. She requested that I send some axial slices from the scan so that she can look at the size of the ventricles, and she is talking to a neurosurgeon about possibly ordering an MRI to rule out ICP (intracranial pressure). At the moment, all kinds of things are running through my head, and none of them are good. I will save that for a later post.

The neurosurgeon is Dr. Tuite out at All Children's Hospital in St. Petersburg. This time around, we may end up there so that we can have the same craniofacial surgeon along with a personable neurosurgeon. For those of you who follow the story of Jorge Posada's son, Dr. Tuite was on the team that operated on Jorge Luis at All Children's when they were here in Florida. I hate the idea of having to go to a different city and have a new neurosurgeon, but circumstances have changed, that require us to make decisions about where to go and which part of the original team to use. I am confident that God will guide us to the best place, as He always does. Simon seems to have some extra spiritual protection in everything that he endures.