There are two types of surgery I said I never wanted to need in my life: eye surgery and brain surgery. Eye surgery took place early in 2016 and brain surgery … well, spoiler alert for this post: early 2019.
Yep! It turns out that my brain is too big for my skull, or my head is too small… either way, 2019 looks to be the year of neurosurgery for me.
In May of this year we discovered that I have Chiari Malformation. Essentially, part of my brain is herniating down my spinal column through what is called the foramen magnum: the hole in the back of the head. I spent a good 4 hours laughing about it and then a few days singing ‘Brainstem’ from Pinky and the Brain (see: https://www.youtube.com/watch?v=snO68aJTOpM).
My foramen magnum is half the size of that of a grown woman and therefore already struggles to allow room for the brain stem and spinal cord to pass through. Add in the crowding of the cerebral tonsils and we have some issues.
You know the saying “I need this like I need a hole in my head”? Turns out I need a bigger hole!
The other complication is that the anterior part of my spine at the top of C1/2 (dens/odontoid) is deformed and pushing on the brain stem and further crowding the space of the foramen magnum. I certainly don’t do anything by halves.
There is a very crowded space where the brain stem should ‘float’ freely in cerebral spinal fluid (CSF). What I’m left with then, is compression of the brain stem and spinal cord as well as a reduced flow or blockage of CSF at that point. Welcome constant and persistent headaches that when at their ‘best’ must be straight from the pit of hell (read: severe neck pain, high pressure in the head, tinnitus,…); as well as dizziness, blurry vision, peripheral neuropathy, balance/coordination issues, breathing regulation and swallowing issues… just to name a few. Oh yeah, and the beginnings of memory recall issues … one of my worst nightmares. Fun stuff.
Admittedly, the diagnosis came as a massive relief. Whilst completely left of field as it was an incidental finding, it explains the nightmarish headaches of the last 30 years. Too often have I asked to drill a hole in my head to relieve pressure, or simply cried that I would rather die than endure the pain. It is somewhat satisfying to know why I get them and why certain activities exacerbate them.
In late October, decompression surgery or neck to skull fusion were put on the table as options to prevent further damage and reduce the persistent headaches. The fusion is by far the scariest option and threw me for six for a short time. I had never considered that fusion might be needed. I can’t imagine not being able to move my neck, even with my current limitation.
Long story very short, I found an amazing neurosurgeon who sought advice from others in her field to ensure we take the best step forward. She recently told me to go and enjoy a good holiday for Christmas with the kids and plans to conduct decompression surgery early in 2019. This will mean removing part of my skull, possibly part of my spine (C1/2), resecting or shrinking part of the brain and then putting a patch in to close everything up. We’ll then need to monitor and pray that there is no further deforming of the spine so that I can avoid a neck to skull fusion.
I am, however, excited at the prospect of getting rid of these headaches that I’m convinced only those with CM will understand. I’m also extremely thankful to have found a neurosurgeon that I trust and with whom I had an instant rapport. She is amazing and has even agreed to operate in the public system at the RAH. Praise God for these mercies!
So, to my local friends: I’m sorry if I have forgotten anything this year. It has been and I’m sure will continue to be a bit of a ride. I’ve still tried to be present but there have been some distractions.
As for life at the moment: I’m trying to take one day at a time. Some are much better than others. I’m no stranger to pain and complications, but this is a bit more than I am used to!
I don’t have a date yet, but when I do I’ll be sure to let friends and family know. I am thinking we might need a bit of help along the way. Those that know me well are aware that there is a bit of control freak in me … maybe I’ll finally learn to let go. I suspect this will bring a whole new level of vulnerability.
Peace and health to you all
– Ang xx
Psalm 73:26
PS. For those who are game to watch, this is the basic procedure : https://www.youtube.com/watch?v=x3l2YMUuwfs&feature=youtu.be&fbclid=IwAR2CtRj6V1E-IGagaPvmvnwwKoN73XX4InaE5egCuF6yMsjGU15sfwf38M0