People sometimes ask me "how's your ear thing?". Well the quick answer is "good thanks" but the reality is a little more complicated.
I have a super rare ear disorder called Superior Canal Dehiscence Syndrome (SCDS). I wrote about it here
It's a hugely disabling condition that not only robbed me of my ability to make a living but also of my ability to sing or even listen to live music. It's been horrendous to live with. At its worse SCDS affected my balance and my voice, leaving me unable to drive, unable to listen to music or tolerate any loud sounds at all. It made my singing voice sound like a kazoo through a broken speaker.
In 2023 after a long wait I finally had some surgery to try and alleviate the symptoms. It's a big operation that involves having your head cut open. They plug the hole with a bone paste/cement. Recovery was long and not without side effects (hello tinnitus my old friend). But the positive is that it dialled back almost all of my symptoms to make life feel liveable again.
It's not a cure but it gave me enough back to make me feel hopeful and to be able to start doing work projects again. However I have to face facts that I will never be able to perform live to the extent I used to years ago.
Back when I was first diagnosed I had CT and MRI scans that showed I had a hole in the bone of my right ear. It also showed that the bone in my left ear was very thin. So there is always a chance that it might eventually form a hole in my left side too. Even thinning bone can cause symptoms.
So right now, as of 2025, I am beginning to see a worsening of some of my symptoms. I notice it especially around driving and what is called 'vestibular overload' if I do too much. Anything that involves, walking, talking, driving or being around sound, can leave me fatigued, nauseous and anxious.
I've also developed pulsatile tinnitus in my left ear (hearing your heartbeat) and I notice my left ear is less able to tolerate sharp sounds. In short I think things are getting worse in my non-surgery ear. For now I will be vigilant and see how symptoms evolve but open to the chance I might need another surgery if it gets worse.
Meanwhile I look fairly normal. It's a hidden disability. But given how bad things got, I'm very grateful to be able to sing and play music and to be able to earn a living, albeit in a very reduced way.
