So it’s been very well established by now that I’ve had a stroke at an unusually young age. But why?
My whole life, I’ve been fascinated with the brain, its anatomy, how it works, just everything to do with it. When I suddenly found myself with a neurological condition… on the one hand, yeah it’s utter crap that I’m going through this. But on the other hand… I couldn’t believe the irony! I found it so ridiculously cool that I could study myself!
It turns out that I have a condition called an arteriovenous malformation, or AVM for short. This is a congenital condition, meaning I was actually born with it, and is pretty rare – only about one in a million have it. So when my boyfriend tells me I’m one in a million… I guess he’s been right all along! An AVM is an abnormal tangle of blood vessels that should not exist. Instead of blood going through arteries, then the capillary bed, then through veins, there is a direct flow of blood from artery to vein. Which is bad. This can cause blood to be taken away from its intended destination, which when that destination is the brain… can cause dramatic consequences. Furthermore, when high pressured arterial blood goes directly into the thinly walled veins that are more accustomed to low pressure blood, the veins can dilate and get stretched out. The thinner the walls are, the more likely they are to rupture. Which is what happened in my case – imagine like a water balloon that was filled too much. AVMs tend to be discovered by accident as they don’t cause any symptoms – until they become too big and either rupture, or steal blood from a part of the brain to cause seizures, headaches or other weird effects. They do however tend to be discovered around my age group – the 15 – 25 group – as that tends to be the point at which the AVM becomes sizeable enough to cause a problem.
In order to make light of the situation, and to have something to blame, my boyfriend and I decided to name it. Ralph. He came up with the name – perhaps inspired by the titular character of the film Wreck it Ralph. Because let’s face it, Ralph has kinda wrecked my life! But I was still fascinated. I had to know everything about it. The opportunity arose for me to get a copy of the scans and of course I took it! The radiology report was as follows:
“There is a large, deep, diffuse right temporal lobe AVM. The abnormal vessels are centred on the right anterior temporal pole, with a maximal diameter of the malformation at over 3.7cm. Multiple feeding branches from the right middle cerebral artery are noted, and there are both deep and superficial draining veins. There are several aneurysms arising from the abnormal vessels, the largest measuring 1.8cm in the temporal white matter arising from a vein that continues to drain to the deep venous system converging with the great vein of Galen. The large aneurysm demonstrates surrounding parenchymal haemorrhage, and this has dissected into the temporal horn of the right lateral ventricle. There is blood tracking within both lateral ventricles, third and fourth ventricle, with some blood extending into the subarachnoid space. There is early mild hydrocephalus.”
Which can be basically summarised as: My AVM is HUGE, and bled a LOT. It scared me to read that the main arterial supply to my AVM came from my right middle cerebral artery (MCA) – the MCA is one of the main arteries that supplies about 1/3 of a hemisphere. So if that blows… there’s no coming back. It was also a shock to read how big Ralph was. There’s a grading system for AVMs to help determine the course of action, and whether or not to leave it alone. Mine is Grade IV, and the worst – Grade VI – is essentially seen as untreatable. Things are pretty serious.
Even though I understood the radiology report and understood how large Ralph is, I didn’t quite appreciate how big it was until I saw the images:
These three images show just the blood vessels in my brain. In the image above, the dotted line represents a line running through the middle of my brain. Everything on the right of that dotted line is normal. Both sides are meant to mirror each other. Yeah. That’s what a 4x3cm AVM looks like.
These three images show the bleeding that happened in my brain – the white stuff that I circled in red is blood. The ventricles are normally filled with CSF, the liquid that bathes the brain. But there’s only a limited space for fluid, so if that gets replaced by something that isn’t meant to be there – like blood – the poor patient suffers from excruciating pain, vomiting, dizziness, neck stiffness… much like I did. I was not surprised in the slightest that I felt so awful after I saw these scans!
Even though these images came out of a truly awful situation, I find them really beautiful – especially the CTA scans of my blood vessels. It’s almost like abstract art, but it’s so strange to think that that alien like blob is still in my head and very much active.