Out of Left Field

Two weeks ago Matthew had a MRI of his head to rule out (or in) mild cerebral palsy as the cause of his gross motor delay as well as several other issues. Nobody was expecting what the images showed. It turns out Matthew has what is called a Chiari I malformation. Essentially his cerebellum extends below the base of his skull. Many people have this and are completely asymptomatic. Others however, have severe issues related to this condition. Unfortunately it looks like Matthew falls into the latter category.  His excessive drool, low tone in his mouth and face, and choking on thin liquids are all signs that his Chiari malformation is causing issues.  His gross motor delay and spasticity in his legs may be caused by a related condition called Syringomyelia (fluid filled cysts along the spine) and/or a tethered spinal cord. He will be having a complete spinal MRI in the coming weeks to check for those related conditions.

After spending some time researching this condition and finding a Facebook group (because there are Facebook groups for everything) I found a pediatric neurosurgeon in our area who specializes in this condition. Thankfully his pediatrician is able to write us a referral to this doctor, as she has worked with her before.  I have already emailed the neurosurgeon asking what additional images she would like to have completed prior to his initial appointment. She was extremely quick to respond so now it is a matter of getting the MRI scheduled.

So what does this mean for Matthew? It may be as simple as watch and wait while limiting certain activities. It may be as complex as brain and spinal surgery to prevent further neurologic damage. The truth is, at this point we just don’t know. Someone asked if he was in pain. Honestly, I don’t know. He could very well be living with chronic pain, but because it is normal for him, he doesn’t complain.

Before his MRI, my biggest fear was it would show an inoperable, malignant brain tumor. This was my second biggest fear. Something that may not kill him, but will make his life even more challenging. There is no cure for this. Surgery will only prevent further damage. It may not even alleviate current symptoms. And no amount of Google searching could find a connection between food allergies and a Chiari Malformation. Trust me. I tried.

I don’t know much yet. We need to wait until the MRI of his spine is completed and we meet with the pediatric neurosurgeon. I do know that my son is the strongest, most stubborn child I have ever met. He has already fought through several challenges in his short life, and he will fight through this one. I just wish he didn’t have to.