Cavernoma Diaries
At 1:15am my 8 month old son broke what I had come to consider a divinely gifted streak of relatively painless nights sleeps in spectacular fashion. To conclude a 90min succession of false starts, cries, and attempts at pinching the raw flesh off my arms - after much comforting and a bottle feed - he threw up the warm contents of his stomach all over my chest, the floor and his sleep sack. By the time I’d managed to engineer some semblance of order again, he was back in his cot fast asleep, and sleep was the furthest realm from my reality.
It was in this state between restlessness and exhaustion, having tapped in my wife for breakfast duties, that I chose against my better judgement to mindlessly thumb between the open apps on my phone, with the duvet and closed blinds offering a cloak of darkness from the encroaching morning light. I use twitter on the browser thinking it would produce less impulsive scrolling but the verdict is still out on that. Instagram, I periodically uninstall and download when I feel I have something worth sharing or looking up, but recently it’s become a more firm feature on my daily phone activity and yes, I partly despise myself for it.
The first post on my feed was from The Cavernoma Society - an organisation I discovered a few years after my diagnosis - sharing the fact that 28th February is Rare Disease Day, which according to the standard definition, my quirky brain condition falls under. Over time I’ve become more comfortable talking about my cavernoma. I did a few social media posts talking about it a couple years ago to raise awareness which I hope had some effect, at least within my extended network.
The varying nature of how this disease has affected me since its early signs in 2016, and perhaps my temperament, has meant that the condition hasn’t imposed itself in an all-consuming manner. But every so often I get reminders. Sometimes it’s mundane like realising I’m running short on anti-epileptic medication and wondering if my next order will arrive in time. Or having a few seizures in a day and retracing my timeline of activity to see if I missed a dose in the daily hustle of life. Besides those moments, things just seem to tick along.
When it comes to treatment, I was used to a certain pattern of events: annual MRI scan, a 10min consultation several months later (with a couple reschedules factored in), repeat next year. The plan of action was precisely nothing - to wait and observe how things play out. As it turns out, this was simply the protocol for cases like mine. Given the position of my cavernoma in a very active region of my brain, and its relatively mild effects on my day-to-day life, surgical intervention was considered high risk.
At various points I’d have bursts of more proactive ownership of my condition. I’d research extensively online and eventually (courtesy of my wife’s company health insurance) sought out private specialists. I came across an impressive neurosurgeon who was one of two pioneering practitioners in a novel, minimally-invasive laser ablation procedure to remove brain tumours. Hopeful, I scheduled an appointment but after reviewing my latest MRI scan, he soon concluded that it would be unsuitable for my situation.
With that light of optimism distinguished, it was back to the ambiguous. In some ways it’s good news when things haven’t changed, it at least suggests that there is low risk of a serious bleed in the future, with some precautions of course. Yet, it’s these precautions that introduces its own flavour of tyranny. It is generally recommended to avoid things that increase risk of head injury or excessively spike blood pressure. So continuing the jiu-jitsu classes I was 3 sessions into was now out of the question, but can I go on a funfair ride? Do heavy weight lifting? The vagueness of it all is in tandem with the lack of longitudinal research on my condition, and often other rare diseases. I quickly learned that private Facebook groups where people share their experiences becomes the default resource for many to seek advice and a sense of community. Though I joined them, they never appealed to me enough to fully engage. I was still in medical limbo so to speak. I couldn’t really relate to those who had been through the extremes of brain surgery or suffered multiple strokes, but at the same time Jacksonian marches, the sudden outbursts of twitching, cramping or pins and needles on my left hand and side of face were, again, gentle reminders.
9th June 2022 was different. It wasn’t gentle. It was the kind of reminder that loudly disrupts the muted concern that lays dormant. Before heading to my appointment I told my wife, at that point heavily pregnant, that I’ll record the consultation so that neither of us has to rely on my, at times, patchy memory. This was the first time I’d met my private consultant face-to-face, with previous communication conducted exclusively via video call and emails during the pandemic. I made a point of taking in his speech and body language. He has an air of quiet confidence that reassures you of his competency despite his soft-spokenness. After exchanging brief pleasantries we got straight to the matter.
“I’m afraid your cavernoma is there of course - it hasn’t bled - but it has slowly increased in size”
Listening back to the recording I’m transported back to the room in Harley Street, but even now I can’t tell if I had fully processed it all in real time. In 5 years of repeat scans and appointments there had never been any changes and now there’s growth? My voice certainly doesn’t betray any strong emotional reaction, just curiosity and matter of factness.
“There is some suggestion of change… you should start thinking seriously of taking it out”
The full conversation lasted 15 minutes. There are certain intricacies not worth going into but the gist of developments were; following further tests to map my brain and assess neural activity in the surrounding area of my cavernoma site, it would be his recommendation to consider removal via an awake craniotomy (basically, brain surgery whilst I’m awake).
I was a bit cautious in telling my wife given that we were 2 weeks away from our son arriving but she received the news as well as I could have hoped for - teary-eyed, worried, but optimistic. A few days after I told my parents on the phone as they listened in from their home in Ghana. Everyone’s taking it in their stride. At the time of writing I’m one further MRI scan into the process but it’s still very early in determining whether I will definitely undergo this route.
I’ve previously described the presence of my cavernoma as a “mild annoyance”. I've had seizures in some pretty awkward work situations; its disallowed me from driving; and brought uncertainty concerning the risk of additional bleeds or a stroke at some point in the future. Part of me is excited by the prospect of this looming uncertainty possibly being removed but it’s pretty well compartmentalised as I occupy the space between hospital visits with life - of which taking care of a new one is a big part.
I think it’s fair to say that my underlying faith plays a part in my calm. The first doctor I saw commented surprised by how “well” I received my initial diagnosis in 2017. To be honest, I was probably relieved to finally get some definitive answers, but more than that, my belief that life itself is a Divinely willed test - fleeting in nature - is the ultimate reminder not to cling so dearly to it that we fail to appreciate the beauty in that reality.