Ramsey has a spinal anomaly. His skull is fused to the C1 vertebra (the top of his spine). Also, the C1 is smaller than it should be. I was referred to Neurosurgery where I set up the first available appointment on December 7. I asked for someone to talk to, someone who could explain what this might mean for Ramsey. I was told I could talk to someone but they wouldn't be able to answer any questions until our appointment. I was left to make the only illogical decision we all make- googling. I found some scary info which, in hindsight was probably a worst-case scenario or perhaps an unreliable source. After panicking, I googled again. I found people who discovered a skull/C1 fusion decades into their life, after headaches began. I found lists of other symptoms that, although undesirable, are less worrisome than what I originally thought.
I was advised to remove the helmet and to stop doing any types of therapy on his neck. They feel his head will naturally continue to round out on its own. As far as the length of his head, that's still unresolved. We are having another scan to take the current measurements. I believe that's just how his head was meant to be shaped. Our family has long heads. His head wasn't meant to be round.
Today, I talked to our awesome pediatrician who always knows just what to say. I asked her about the fusion. She said Ramsey might face limited mobility or headaches. If he needs surgery, she said it would be a mild surgery to release any impingement. This is just her observation based on my information, but at least it's something.
It's ironic that they even found this issue so I am thankful that they did. I will pray that if he needs surgery, that it is an easy surgery. To me neurosurgery doesn't sound like it would ever be easy (guess that's why I sit behind a desk all day).