A Bit About My Brain

As I've mentioned in my first post, I have recently been diagnosed with Chiari Malformation (type 1), which is a rare brain condition. And I have since discovered I also have an even more rare spinal condition (which is related), called Syringomeylia. I am going to attempt to describe both conditions, but I would like to say now that I am in no way a medical professional, the descriptions are purely based on my own research and experiences.

Chiari Malformation is a condition where the cerebellum is positioned lower in the skull than it should be, so it actually sits into the spinal cord. From my research it is believed to be a condition that forms in the womb, although they don't seem to know whether it's the brain or skull that doesn't form correctly. The brain is basically too big for the skull, or the skull is too small for the brain - whatever way you want to look at it.

In my case the cerebellum is acting like a plug in the top of the spinal cord, so the spinal fluid can't move around the body as it should do. I understand that this can sometimes cause fluid on the brain (hydrocephalus) or even more rarely it can re-direct the fluid into the spinal canal, causing a cyst in the centre of the spinal cord known as a Syrinx and the condition being called Syringomeylia. This in itself is a very serious symptom as Syringomeylia is a degenerative spinal condition that if left untreated will lead to paralysis.

Often Doctors are quite torn about whether to operate on someone with Chiari and no symptoms such as pain or headaches, like myself. The deciding factor can sometimes be whether the person has a Syrinx or not. Hence why they want to operate on me even though I don't have any pain at the moment. My Neurosurgeon is unsure of how long my condition would take to get worse - it could be a couple of months, or I could go my whole life until I am 85yrs without problems, they just don't know. All they do know is that sooner or later the Syrinx will grow and it will cause paralysis. By the time it causes me pain in my arms/hands/wrists it would be too late to operate.

For me that's actually quite comforting because it means there is no tough decision for me to make around whether to have the surgery or not. It's just not up for discussion.

So 2.5 weeks and counting.

S x