Rachel’s Story

I first noticed something was wrong when I started experiencing this horrible itch deep in my ear – honestly, it felt like a spider was crawling around in there. Then came the vertigo, the pins and needles and I started to worry. Then one day, I stepped out of the shower and realised I couldn’t move my arms to dry my hair. It was like my body had just forgotten how. That’s when they diagnosed me with an acoustic neuroma.

In 2019, I had emergency surgery to remove it. The doctors warned me there’d be facial palsy, but they said it wouldn’t be too bad. They were wrong. What I ended up with was severe synkinesis – a condition where the nerves in my face misfire, causing muscles to contract in strange and painful ways.

The surgery also left me deaf in one ear. During Covid, the world was so quiet that it almost didn’t matter, but once everything started getting loud again, I became overwhelmed. Noises feel like they come from all directions, and it’s so disorientating.

I started physiotherapy and began getting botulinum toxin injections to manage the spasms. The synkinesis spread to my neck, and I couldn’t even close one eye. I had to tape it shut every night.

I used to teach cheerleading, but I gave that up. During the pandemic, I hid away from everything and everyone. I’d never experienced anxiety before, but it hit me hard. And then my partner left – he couldn’t cope with what was happening to me. That broke me more than I thought it would. My confidence just… vanished.

I ended up dropping down to six stone because eating became difficult – my cheek was too weak. I’ve since been told I’ll likely need surgery because the muscle is wearing down. I can blink now, but very slowly, and my eye is always dry. I have to use drops every day. Cold days are the worst – my face is so painful. Summer is easier, but I have to wear sunglasses constantly to protect my eyes.

The tumour has come back now, and it’s made the facial palsy worse. At least I don’t have to fight for Botox anymore. I’m going for radiotherapy – Gamma Knife treatment. I’m worried, though. They say it’ll likely affect my balance, and I’ve already been told the tumour will keep coming back. That means more treatments… possibly more surgeries.

The worst part? I knew it was back a year ago. The itching, the balance issues – they all came creeping in again. I told my consultant, but they brushed me off. I ended up in A&E with severe facial pain, and finally, an MRI showed the tumour had returned. I just wish someone had listened. You know your own body.

I was offered another surgery, but I just couldn’t go through it again. I asked for alternatives, and they recommended Gamma Knife, but that’s only available in Leeds – not Northern Ireland. So I’ve had to arrange a three-day trip away from my kids and home just to get it done. It feels like Northern Ireland is so behind when it comes to treating conditions like this. I gave my life to the NHS – I worked as an auxiliary nurse – and it’s heartbreaking to feel like this condition, and people like me, just don’t matter.

It’s been hard to accept all of this. I’m 47, and you’d think I’d be past caring about how I look, but I do. I hate having my photo taken. I always use a filter. I used to be so outgoing – always out dancing, part of clubs and groups. But it all just stopped.

Counselling and talking to psychologists has helped a little, but I’m still me. The same person inside, just dealing with a lot more. I’m lucky, though – my new partner is so supportive. He comes to all my appointments and really listens. That means everything.

This is the first time I’ve ever spoken publicly about having facial palsy. I got it in 2019. You can’t hide your face. It’s the first thing people see, and I’m always aware of it. I turn slightly when I speak to hide it, or I cover my mouth without thinking. New spasms happen all the time, and I never know what my face is doing anymore.

The nerve healing after surgery went wrong – some things got crosswired – so I’ll most likely live with synkinesis for the rest of my life. But I’m lucky in some ways. My family is incredible. My neighbours too. After my surgeries, they took such good care of me. My mum knitted me snoods to keep my face warm in winter. Small comforts mean a lot.

I’m part of the Brainwaves charity, and my 12-year-old daughter is running an event through her boxing club to raise money for them. I’m so proud of her. She tells people, ‘You have to talk to Mummy on the left side,’ and she jokes that my favourite word is ‘What?’

Life has changed so much. I can’t work anymore, though I loved nursing. My balance, the constant appointments, the pain – it’s all too much. Even silly things hit me. Like when I tried to renew my passport – my mouth was slightly open in the photo, and it was rejected. I can’t help that. I had to do intensive massage and stretches just to get a picture taken. Or when I go for fast food and can’t use the paper straws, I have to ask for two and hope the cashier doesn’t ask why. Even soup spoons in restaurants can be tricky.

My dad passed away two years ago, right in the middle of all this. It felt like my world had ended. I threw myself into caring for my mum, which helped in some ways, but my mental health suffered. Still, I keep going – for my kids. I go on runs with my youngest, support her boxing club. My older daughter works in Care in the Community, and I’m so proud of her. She does amazing things, and I love being involved in her projects.

After this next round of treatment, I won’t be allowed to drive for six months, but my son and daughter both drive and are ready to help – I’m so grateful.

I still struggle. I worry about how far this radiotherapy will set me back, but I’m relieved I don’t have to fight to be heard anymore. I’ve fought hard enough already. And as long as I’m still alive, I’ll keep going – for my children, and for me.