February 22-23, 2018 "Optic nerve edema #2"

Man, has this boy come a long way!! I remember having to sit in the examining chair with Rayden in my lap, hold his arms and head down for the eye doc to look in his eyes. He would scream like someone was killing him and I would end up soak and wet with sweat! NOW...he sits in the chair all by himself, keeps his hands in his lap and identifies the pictures at the end of the room. It's amazing!


Dr. Grace has been watching Rayden's eyes do crazy things for three years now. She has been mentioning possible surgery but has been very conservative, allowing his eyes to mature. Today she stated that the inferior oplique over-action has gotten really bad. It is time to do the eye surgery. During this surgery her main objective would be to correct the inferior oplique muscle. Although it is under the eye, this muscle is responsible for making the eye go upward. While she is in there she is going to work on the other muscles on the side to prevent his eye from going outward. Unfortunately she believes it may take more than one surgery to correct the issues.

Rayden's vision is 20/50 in the right and 20/80 in the left. This surgery is to correct the misalignment of his eyes. It will not correct his vision, although it is all kind-of related. Children get bad vision because their eyes are misaligned. Therefore, if we correct the misalignment, we will improve how much visual stimulation he's getting. He is not getting enough stimulation when his eye is out or upward. This is not a cosmetic surgery either. His vision is still developing and his brain is trying to learn to use his eyes together. Learning to use the eyes together is one of the most sophisticated things the brain does. Rayden had so many crazy things happening in his brain when he was first born that she's not sure he will ever use his eyes together perfectly because that develops when your are tiny. This all comes from the eye muscle control center in the brain, of which she can't operate on because doctors don't even know where that is!! She says there is nothing wrong with his eye muscles, but by moving these muscles around it tricks the brain to think they are in the correct position. But that is also why it can come back. The surgery will only take about 45 min to an hour under anesthesia. His eyes will be very, very red for a couple weeks afterwards. To minimize anesthesia she would like to do it when Dr. Cuomo operates on his hip and right foot. Ultimately performing three surgeries at once.

At the last appointment, Dr. Grace noticed that Rayden's optic nerves were swollen. She was concerned that his shunt may be malfunctioning. We ended up getting an MRI but it didn't show anything. Today we took nerve photos. In the top photo there is a little, sharp, black line around the circle in the center of the eye. This is a normal optic nerve. In the bottom picture that little, sharp, black line is NOT there. The optic nerve actually looks bulging. This shows optic nerve swelling. These nerve photos allow us to see what Dr. Grace sees when she looks into his eyes. She is going to send these photos to Dr. Elton, Neurosurgeon, because she believes his shunt may be malfunctioning.




The very next morning I received a phone call at 7:30 am from Melody, Dr. Elton's nurse. They had received the nerve photos and Dr. Grace's notes. We had to go back to UNC because they decided to change his VP shunt valve setting from 2.0 to 1.5. This will allow for more CSF to flow OUT of the brain hopefully alleviating any pressure on the optic nerves. The scary part is she said it couldn't wait, it had to be changed now! His shunt has been set on 2.0 since 2015. It is frightening to me because the CSF could be backing up because of a blockage in the shunt valve or tubing. Opening it up could flush the blockage out OR it could allow for more CSF to get stuck in the tubing making it bulge out. There are soooo many different things that could happen. My mind goes to a million different places. The very, very last thing I want is for this shunt to be malfunctioning and they have to do another brain surgery on my baby!!!!! I pray that changing the valve setting is the right decision and that nothing further is needed. We will take more photos in four weeks to compare his optic nerves.