Consequences

Consequence /ˈkɒnsɪˌkwɛns/

noun

A result of actions, especially if such a result is unwanted or unpleasant.

 

Receiving a diagnosis of an AVM leads to a lot of consequences. A lot of them have been unwanted or unpleasant.

My neurosurgeon, Mr Shieff, explained many of the issues surrounding AVMs very thoroughly to myself and my family. Unfortunately, despite appearing to have the capacity to retain the information and understand at the time, I soon discovered that I wasn’t lucid at all during this process and had to rediscover information slowly post discharge. Fellow med students, this was another learning point for me – always, always, always explicitly write down if you have gained consent from a patient, because even though all my notes say that I gave consent to having an angiogram done when I came in, I do not remember it. My boyfriend told me that when they gained consent from me I understood and I even spoke to them about the procedure, but I have no memory whatsoever of this.

Anyway, I’m getting side tracked.

I had so many questions about the implications of my diagnosis. Obviously studying was out of the question for the time being – I had just had a brain haemorrhage, that much was obvious. I had missed an assessed presentation that took place during the week that I was in hospital and I remember getting quite agitated over that, sending email to the relevant people. Somehow my BSc module supervisor and the BSc co-ordinator had already known about my condition though, and assured me that assessments could wait. Mr Shieff had instructed me very strictly not to do anything university related, and to just focus on recovery for at least 2 months. “Recovery should be fun“, he told me. But what could I do in the mean time? That depended on the physical, cognitive, psychological and life consequences of having an AVM, as I found out the hard way.

Physically, I was very weak. Having spent 10 days in a hospital bed, barely moving, had meant that a lot of my muscles had atrophied (wasted away). I lost 6kg in hospital due to this and to my inability to eat for the first few days. Once I was discharged,  getting through each day became a struggle. I spent most of my first few weeks post-discharge sleeping. Walking up stairs would fatigue me to the point where I would have to sit down for a few minutes and afternoon naps suddenly became glorious. Simple actions that didn’t require any thought previously now became more complex, such as sleeping – sleeping flat caused me to wake up with a severe headache, so I had to construct a pillow mountain so I could sleep upright. If I dropped something, I could no longer bend over to pick it up as that caused a rush of blood to my head that lead to dizziness – I became very good at squats. Even walking and taking stairs started needing more thought as I dealt with having less muscle in my legs. I was told that exercise was good, advisable even. But I should avoid things that raised my blood pressure too high, things that involved bouncing, things that involved balls or anything that could hit or knock my head. So that’s most sports. The biggest blow was the realisation that I had to quit cheerleading, a sport (yes, it is a sport!) that had been part of my life for the past four years. Part of my livelihood had been torn away from me, and this took a long time for me to come to terms with. The video below is my team, my family. Oh how I miss it!

Cognition became very, very difficult. I expected to have problems with my memory (short term memory was virtually non-existent), concentration (reading became impossible) and focus (unless if it was one sentence, I couldn’t follow conversations, films or TV programmes anymore). I did not expect the constant feeling in my head that dogged me from the minute I woke up to the minute I fell asleep. It was hard to describe – my family and I ended up making a lot of weather analogies, with me saying that I was “feeling cloudy” when it was bad. It felt like there was a constant fog swirling in my head, but sometimes it felt… fluffy.  The closest approximation I can think of is that state between being tipsy and being drunk, when your head feels simultaneously heavy and light, nothing feels stable or concrete. I also found that when the clouds in my head did clear and I managed to do anything vaguely mentally taxing, it would cause me to become physically very tired. Multitasking was out of the question. And I became incredibly scatter-brained and sometimes didn’t make sense when I was speaking. An interesting, albeit temporary, symptom that I noticed myself experiencing was something called dysphasia – the inability to communicate or process language properly. I was constantly forgetting words, or having words on the tip of my tongue that I couldn’t get out. But this was only spoken dysphasia – I was still as eloquent as before in the written word. I also briefly experienced prosopagnosia – the inability to distinguish between different faces. I would watch a programme or film and everybody would look the same, and whilst this was happening it would make me feel very strange – to the point where I couldn’t watch any more. Of course, my “diagnoses” of dysphasia and prosopagnosia weren’t done “officially” by a neuropsychologist or my consultant – I found myself analysing myself (perhaps it’s med student syndrome!). But analyzing my cognitive defects was utterly fascinating, for I had only ever read about things like this in textbooks or Oliver Sacks books and it was odd to experience them and recognise it so effortlessly!

When I was discharged, my family and I were warned of the physical and mental effects that I would suffer. We were also warned I would experience severe mood swings, which soon showed. But nobody prepared me for how deeply affected I would become psychologically. It descended on me like a ton of bricks one evening in April. This was actually happening. This was actually happening to me. I would have to deal with this for a good part of my life and suddenly I had to rediscover who I was, because the two things that I felt defined me – cheerleading and being a med student – had been torn away from me. I spent a lot of nights crying and entered a state of… well I wouldn’t call it depression, but something quite close to it… for a while. All motivation had disappeared, replaced instead with apathy. I had so much time to do things now, but I couldn’t physically, mentally and emotionally do the things I wanted to. My boyfriend managed to persuade me out of this state though by getting me to start knitting!

Finally, Ralph had caused life consequences. My bleed happened in March, my dissertation was due in April and exams were in May. All postponed now. My BSc organiser had told me I could hand in my dissertation “when I was ready” (does this mean I had an unlimited deadline?) and exams were postponed until the August session. My graduation was also cancelled. But even taking exams in August was subject to my neurosurgeon giving his blessing. Socialising became temporarily quite difficult, as too much noise or sensory input made me feel very uncomfortable. And then there was the small matter of how to deal with Ralph. There were essentially only three treatments for AVMs – surgical removal, endovascular embolisation (sticking a needle into the artery in my groin, threading it up to my brain and filling the AVM with glue) or Gamma Knife radiosurgery. My AVM was too deep within my brain for the first option and too complex for the second, so that just left the gamma knife. The idea with gamma knife is to target the blood vessels that supply the main body of the AVM with a high concentration of ionizing radiation, which will kill the cells in the walls of the blood vessels, causing them to thicken and effectively choke themselves – starving the AVM of blood. Unfortunately, this process takes up to 2 years… and even then it’s not 100% guaranteed to work and could require multiple doses of radiation. There’s also the slight problem that gamma knife works best in AVMs smaller than 3cm, which mine is not. So it looks like Ralph and I are going to be together for a long, long time – it’s time to make life adjustments accordingly. I’m now one of those med students that has “special circumstances” for their clinical placements, something that I never thought that would happen. And travel is now difficult – I’m not even sure if I’m allowed to fly! I’m typing this post three months post the initial bleed and every day I’m still discovering strange consequences and changes that have to be made due to my pesky new friend.

 

It’s funny how going through a serious illness affects you. It seems like such an abstract, detached set of words when you hear about somebody else falling ill or having an accident, until it happens to you. I am learning a lot from this experience. Even though there are a lot of negative consequences, it is human nature to persevere and adapt. And so have I.

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