It’s been over four months since my complicated brain and neck surgery.
To those of you who have ask ‘are you better?’ or ‘are you cured?’ and to those of you who say ‘wow you look so normal!’, stop, please. Please don’t project your idea of my health for my recovery. I am not angry, or even remotely upset, mostly just frustrated by your ignorance. Let me clarify – ignorance as in you have not been exposed to this situation and therefore there is no reasonable expectation for you to know and understand. I use the term recovery lightly and so does my husband. He often even refers to me as ‘broken’ – in an endearing, unoffensive way.
You see when I signed consent for my surgery, I also agreed that I understood that the biggest issue with the surgery is it can fail – it is a treatment. Not every human will respond to the treatment similarly, and additional factors must be considered.
If you were wondering, it didn’t fail, but it also kinda did. Chiari is sinister like that. I am sure I’ve mentioned before my neurosurgeon compares the condition to wearing a shoe two sizes too small. You’re wearing the shoe for your entire life, but your foot doesn’t really fit right, it hurts and soon you start to lose feeling in your toes. So you go to the doctor and they untie your shoe for you, but two of your toes are necrotic and will need to be removed. You should really thank your lucky stars you didn’t die.
But you still lost the two toes. The damage is done.
Only, instead of your foot, it’s your brain and your head. Instead they remove small portion of your skull bone, they cauterize the portions of your cerebellum, they remove tissue to make room for your brain, but at the end the damage is done. The reduced flow in your brain has been quietly hurting you from day one.
Now, as I said, the surgery didn’t fail but it did. You see, prior to surgery, my pain baseline was a six out of ten. For those unfamiliar with the pain scale, a six isn’t considering life-threatening. It’s four exhausting points from most excruciating pain ever. But it is considered high and tends to interrupt daily life. It prevents you from socializing, it prevents you from going to school, doing chores and tends to get in the way of everything in general. Six is verging on an inhumane quality of life for someone who is expected to be in pain for the entirety of their existence. So, post-surgery, surgical pain aside, I was down to a two. That doesn’t sound so bad, right?
Right. But also, wrong. The two itself isn’t bad. It is the changes that ensued that are bad. About January-ish, I began experiencing a new headache. Instead of at the back of my skull, it now hangs out behind the eyes, and it’s especially bad behind the right eye. So bad, I am actually experiencing more vision symptoms now than I was before such as extreme light sensitivity, blurry vision, auras, etc. At first, I was a two all the time with a minor ache here and there. But now, my baseline is two and sometimes my pain creeps up towards a four or a five. Now it appears I could still be having intracranial hypertension. We’re following up with a vascular neurosurgeon now who is going to look into equipping me with a shunt or a stent, hopefully, to maintain the low baseline and prevent additional damage or escalation.
So, the surgery gave me back my hope. It gave me back my will to fight and to live. There are so many things it gave me. But it wasn’t a resounding success. Life with chronic illness isn’t a sprint. Hell, it’s not even a marathon.
Before I didn’t imagine I could keep living in pain, I didn’t think I could handle a partial or total failure. I didn’t want to feel the despair of losing another fight. It’s amazing how much I’ve adapted and even more what I’m willing to accept now, versus then. I am not cured. I am not better. I am different.