Andrew's story
In 2019, my life took an unexpected turn when I was diagnosed with an acoustic neuroma—a rare, benign brain tumour that would challenge not just my health, but my sense of self. Over the next five years, I came to understand that while“benign” may be medically accurate, it doesn’t begin to describe the impact this tumour — and its removal — would have on my daily life, my confidence, and my identity.
Diagnosis
It started quietly in 2018 when I noticed a gradual loss of hearing in my left ear, but like many, I brushed it off. It wasn’t until it began affecting my work and home life that I sought help. A hearing test led to scans, and soon after, I was told I had a 1.8 cm brain tumour.
After consulting with specialists, surgery was recommended. I understood the risks — complete hearing loss and potential damage to the facial nerve—but with fewer than 6% of patients experiencing permanent facial nerve damage, I felt reassured. As an engineer, the numbers made sense. I went into surgery with cautious optimism, believing I’d wake up with the tumour gone and my life back on track and in some ways, I did. The tumour was successfully removed, and initially, my facial nerve appeared intact. But within 24 hours, everything changed.
The Reality of Recovery
I had done my research, but nothing prepared me for the reality of facial palsy. It wasn’t just about losing a smile—it was about losing control over everyday functions I had never thought twice about:
- Speech and Eating: I couldn’t close my lips, which made speaking clearly difficult. Eating became frustrating — I struggled to keep food in my mouth, couldn’t whistle to recall my dog, and even drinking from a glass was a challenge.
- Loss of Taste: I lost taste on one side of my tongue. Foods I once loved became unpalatable, while others—like tinned pears—tasted unexpectedly amazing.
- Eye Care: I couldn’t blink or produce tears. My eye became painfully dry, and I wore a pirate patch for months. Eventually, I needed a gold weight inserted into my eyelid to help it close.
- Emotional Toll: I never considered myself vain, but the visible and invisible consequences were hard to ignore. I avoided photos, noticed people staring, and struggled to communicate—especially when tired.
The Long Road Back
Recovery wasn’t linear. It was slow, frustrating, and at times disheartening. I developed synkinesis, where facial nerves regrow incorrectly, causing involuntary movements and further distortion. Smiling made my eye close. Blinking made my mouth twitch. That’s when I met Dan, a specialist in facial palsy. From our first meeting, I felt hope. Dan didn’t just offer treatment — he offered understanding. He spoke to me in a way that made me feel heard. He welcomed my questions, respected my curiosity, and set realistic expectations. Together, we built a plan:
- Botox Therapy: For two years, I received Botox injections every three months — up to 28 injections per session—to manage synkinesis and reduce facial tension.
- Surgical Interventions: I underwent two procedures—one to sever misfiring nerves and another to remove overstimulated neck muscle. These surgeries brought back symmetry and eased the tightness in my face.
- Rehabilitation: Dan connected me with physiotherapists trained in facial recovery. Through targeted exercises, I slowly retrained my muscles and reduced strain.
Where I Am Today
Now, I receive around 9 Botox injections every three months. My face may not be exactly as it was, but I’ve regained control, confidence, and a sense of peace with who I am today. This journey has taught me to advocate for yourself, trust the professionals, the importance of relationships with the medical professionals you deal with and above all else to remain positive and optimistic.