I’ve been away from blogging and doing any real work outside of my day job recently. This is mostly because I was recently diagnosed with a type of low-grade (non-cancerous) brain tumour, an Acoustic Neuroma.

What is an Acoustic Neuroma?

An Acoustic Neuroma is a rare benign brain tumour which usually affects the nerves joining the inner ear to the brain. It is most common in women between the ages of 40 and 60, which as a 26 year old man makes it particularly rare. It grows slowly, so it isn’t cancerous, but it can permanently damage the hearing, the balance and the mobility of the face on one side by pressing upon the relevant nerves. It can also grow to such a size that it follows the nerves along to the brain stem and presses upon it, which can pose a threat to life.

There are currently three available treatments:

‘Watch and wait’, where the tumour is actively monitored every 6 months with MRI scans. This is because often the tumours never grow, or grow very slowly and the other treatments are invasive and damaging.

Radiotherapy, which stops the tumour from growing for a period of time, but doesn’t tend to reverse its effects and risks causing cancer elsewhere due to the firing of high energy particles at your head.

Surgery, which is quite invasive, can involve the removal of a section of skull, and the permanent destruction of most of the nerves in the area, with only the facial nerve partially recovering. The recovery can take a long time, with many patients having one-sided facial palsy (immobility of the face) for 12 months or more afterwards, with a possibility of some permanent loss. Hearing and balance is usually permanently impacted.

How has this affected me?

My Acoustic Neuroma has rendered me effectively permanently deaf in my right ear. I also now need to have MRI checkups every 12 months for the foreseeable future. It is very small, and a ‘long’ distance away from my brain (relatively). I’ve not had any facial effects yet, and any balance effects are still minor enough to allow me to cycle for hours at a time. As the tumour progresses, it is possible that my facial nerve will be impacted and I may not be able to ride, or at least not as well/for as long as I do currently.

Single Sided Deafness (SSD) is a strange thing to suffer from, and it catches you in odd ways. In general my hearing is worse as you might expect, although my left ear is actually quite good still. I’ve had to switch off stereo mode on all of my headphones, as when there was a wide sound stage (you could hear the guitar in just one ear for example) I couldn’t hear half of the song. I’ve slept through several alarms and caused several delivery people to get quite angry with me because my good ear was pressed into the pillow, rendering me effectively deaf. When cycling I have to make extra sure that I look to my right, as I can’t trust that I’ll have heard everything coming from that direction. Face masks often render me unable to understand people, particularly if the background is noisy like in a pub or shop with music on. Attempting to understand people in this situation causes very deep fatigue, which is best explained by the spoon theory.

What have I changed to mitigate my disability?

I make use of the auto-captioning feature in Teams and switch on captions for every video that has it (not as many as you’d think!). This helps reduce the cognitive load for me.

I’ve also rigged up a little system to amplify my flat doorbell with a telephone splitter (most commonly used for training call centre staff) and a speaker:

I’m thinking of trying out bone conduction headphones, and getting an alarm that vibrates under my pillow too.

My fiancé and my parents are very supportive, and we’ve all begun to learn sign language for the first time. This is because communicating is going to be difficult for me in noisy spaces like bars or even my upcoming wedding next year, so having a core of us able to communicate via sign language should help me a lot.

Noisy meeting rooms in future are something I’m worried about too as the current eternal WFH situation has actually benefitted me really. Hopefully good meeting etiquette will help, as will holding more meetings in a WFH style: i.e. not all in a room.

BANA, the British Acoustic Neuroma Association, is the registered charity that supports sufferers of Acoustic Neuroma. They do a lot of great work, organising support meetings and advocating for patients. I’ve joined the association and attended several of their recent seminar’s to find out more about the illness and speak to other people in the same situation as me. There’s also the excellent Brain Tumour Research Charity, who highlighted an important fact to me: Brain Tumours kill the most adults and children under 40 of any cancer, but receives just 1% of the total cancer research spend.

Overall getting a brain tumour has unsurprisingly had quite an impact on my life. One of the biggest things for me has been realising I am now disabled, and will be for the rest of my life - if anything things will get a bit worse. For someone who’s never broken a bone or been seriously ill, that’s been a big change for me. I’m fortunate however that I can still do the things I love and that I’m surrounded by supportive people. I’m not going to let it beat me - in fact I’m planning a long cycling holiday at this moment to make the most of it before any balance symptoms start to affect it. I’m also keen to get back in to delivering good content for the community and helping people out with Serverless on Azure.