Hi there, this is Tina, your neurovascular nurse. We’ve had a review of your scans in the multidisciplinary team meeting and we noticed that some of the vessels look… bigger. We would like you to come in for an angiogram to get a better look at it, we’ve booked you in for next Wednesday. Call me as soon as you get this message.
This was the voicemail I came back to after temporarily losing my phone one Friday morning. And yes, by “next Wednesday” Tina did mean in 5 days’ time.
To give a bit of context to this message: I was hospitalised for the second time for 5 days at the end of May, during which I had another MRI and CT scan. I was discharged on a Friday, I know my team have MDT meetings on Mondays and I got that message the following Friday. So all in all a pretty short time frame. Of course, I absolutely freaked out after hearing that message. I had just been discharged from hospital and now you’re telling me the bomb in my head looks BIGGER?! Not cool. I called her back ASAP and she explained that some of the venous varices that drained my AVM looked a bit bigger and I had venous congestion, which was causing cerebral oedema. Which explained perfectly why I had the symptoms I did that sent me to hospital the second time, but there was no new bleed on scans. Ooooohhhh!
To the non-medics reading, I must have just spoken a different language. Let me translate. A “varix” is a swelling of a vein, like an aneurysm. I think the two terms are interchangable. The direct shunt of high pressure arterial blood to the veins was causing them to dilate and expand, causing a varix. As the veins couldn’t drain fast enough due to it receiving blood it wouldn’t normally receive, there was a collection of blood – venous congestion. This was causing my headaches – think like a congested M25 (which also causes headaches). Venous congestion in the brain would cause cerebral oedema – oedema is the the term used to refer to fluid retention, which causes swelling to put it very simply. When there is a build up of blood, some components leave the vessels and enter the extra-cellular space, which makes it look swollen. Hence why you get swollen ankles at the end of a long day of standing – the blood pools in your feet. Anyway, oedema can happen anywhere, but when it happens in your brain it’s extra fluid that isn’t meant to be there – explaining my headaches, nausea, photophobia and neck stiffness.
I know it’s cheesy, but it’s not often that you get that one phone call that changes your life forever. I think it’s safe to say that this voicemail and the subsequent phone call was an example of this and will henceforth be known as “The Call”. How dramatic!