Simon Raymonde on… hearing loss

For most musicians and music lovers, permanent hearing loss is a mortifying prospect – but our columnist’s experience shows it doesn’t have to affect your career, or your life…

Simon Raymonde

In 2003, while producing The Duke Spirit’s debut mini-album Roll, Spirit, Roll, I noticed my ear was getting blocked, as if I was coming down with a cold. A week or two later, it was still bothering me, but I didn’t feel at all ill. I went to the doctors to get my ears syringed, hoping that might do the trick. Nothing doing.

The doctor sent me for a hearing test. I began to wonder… 20 years of loud monitors on stage, listening to music on Walkmans and iPods – was this having an effect? I failed the test miserably in the problem ear, my right. Within a few minutes, I was sent for an MRI scan that day, and figured pretty soon that something was up. “What do you think it is?” I asked the audiologist. “Wouldn’t like to speculate, but always best to get these things checked thoroughly,” he replied. “An MRI scan will quickly tell us if there’s anything to be concerned about, but hopefully, it’ll all be fine.” 

‘I have an ‘acoustic neuroma’ – a tumour attached to the nerves of my brain controlling balance, hearing and facial expression’

Later that afternoon, I lay inside a capsule that looked like something NASA had made, with this strange catcher’s mask over my head as they fed me slowly into the tunnel. They injected me with a contrast dye to make the arteries in my brain appear more clearly on the scan and told me not to move my head at all until it was all over. I was given these horrid ugly green plastic headphones and handed a ‘panic button’, which I was told I could press any time if I started to feel anxious or claustrophobic.

Funnily enough, the minute they gave me the panic button, I started to feel anxious and claustrophobic, and as soon as the radiologist spoke into the headphones: “Okay, first scan is about to start, don’t move your head, this one will last about nine minutes,” my nose felt so tickly I wasn’t sure how I could last 540 seconds without touching it. 

The experience of being inside an MRI scanner is akin to putting your head inside a tiny washing machine filled with large metal balls crashing chaotically around inside the tumbler. Or listening to Test Dept. Eventually, the ordeal was over. Or so I thought. 

The radiologist came out of his glass office overlooking the scanning machines below and said I needed to go back to my Ear Nose And Throat doctor at the hospital that afternoon. When the doctor turned the light on behind the hanging X-rays, I saw my brain from many angles, but all with this weird white egg shape on one side.

“The reason for your deafness in your right ear, Simon, is that you have a brain tumour,” he said. “The hearing is gone forever, I’m very sorry.” I don’t remember anything much he said after that. Immediate thoughts ranged from ‘how do I tell my kids?’ and ‘how can I continue working in music now?’ to ‘it could be worse, I think’.

As it turned out, I have an ‘acoustic neuroma’ – a rare tumour attached to the nerves of the brain controlling balance, hearing and facial expression. Was it a coincidence that the country’s leading brain surgeon of acoustic neuromas, the eminent Professor Bell, just happened to be in the hospital that day, and had space in his schedule the next day to operate and remove the tumour? I asked a lot of questions, such as: “What are the chances of success?” 

“94%,” he said. 

‘I am living proof that you can sometimes find solutions beyond the one you are initially presented with’

The operation involves drilling a hole in your head and carefully removing the tumour (“very glutinous”), taking care not to damage any more nerves. I couldn’t agree to it – too much drama and detail to take in so swiftly, and to make such a life-changing decision. I felt vulnerable; that wasn’t the time to be going under the knife, 24 hours after the news. 

I went home. I didn’t sleep for two weeks, as I researched everything I could and met other surgeons. I consulted with one great specialist in London, who advised me to leave it. “It’s a very slow-growing tumour, it’s benign and unless you’re one of these people who just scream ‘get that fucking alien out of my head now’, and you can live with it in there, go home, go live your life. If things change and you start to lose your balance or get dizzy, then come back and we’ll start some treatment. But why disrupt your life right now?”

His honesty was so refreshing, and while I didn’t ignore what was going on, it gave me much-needed perspective. I have MRI scans every few months to monitor ‘the egg’, and live my life. I didn’t tell anyone outside my family until recently; I didn’t want to burden anyone with feeling sad or sorry for me. I made a double album last year and have signed most of the bands on Bella Union with one ear. 

So why talk about it now? Well, more and more cases like mine are appearing, and I want to give some positive attention to acoustic neuromas. Of course, losing your hearing – maybe more so for someone like me, who makes his living from making and listening to music – can be scary. But it doesn’t need to be. I am living proof that you can sometimes find solutions beyond the one you are initially presented with.

Simon Raymonde is currently in Lost Horizons and was the bassist and keyboard player in Cocteau Twins. He founded the independent record label Bella Union