Ross’s Story

Ross describes his experiences living with a facial nerve neuroma and how a specialist team helped him improve his quality of life rather than simply managing a slow decline before surgery.

Every cloud has a silver lining: I was recently laid up for a couple of days with a cold. But it gave me time to practise those tiresome yet crucial facial exercises – and reflect on progress over the past five years. As it turned out, two good things came out of this: 1) writing this update and 2) making a breakthrough that I’ll tell you about at the end.

First though, let me say that I am grateful that my quality of life is pretty much normal now. It’s been a long road but I’ve had great medical care, lots of love and support from a wonderful family and friends – and I like to think I’ve put in my fair share of effort as well.

In 2009 I was diagnosed with a facial neuroma. It’s a growth on the outer sheath cells of the facial nerve. Such tumours are not very common and can be anywhere on the facial nerve, so each case can present different symptoms and have different impacts on the bearer.

The facial nerve, when working properly, enables simple things you take very much for granted – whistling, closing your eye without everything else moving at the same time, eating without taking chunks out of your inner cheek or dribbling … and much more. It controls tears, saliva, taste, sensations at the outer ear…. and creates the 1000s of facial expressions and micro-expressions through which, wordlessly, we let others know our inner selves.

My little tumour is near the root of the nerve, inside my skull, as it passes through a little tube in the skull-bone, alongside the hearing nerve and balance nerve. As a result, it was causing problems across all the functions of the facial nerve, as well as dizziness, nausea and tinnitus because it was pressing on the other nerves in the tube where it’s located.

The symptoms came on over the course of a year – though it took me a while to realise that I was slowly losing movement on the left side of my face and feeling decidedly odd at times – but as soon as I went to my GP, the NHS swiftly diagnosed me.

Thankfully it’s a type of tumour that is always benign. They don’t seed, and they grow slowly – it could have been there for a few years or more before I noticed it. Treatment is usually either radiation therapy – but my tumour is too small and there is too much risk to other nerves – or surgery to cut it out and graft a new piece of nerve in from somewhere like your neck.

Such surgery is not without its own problems. Nerves rarely graft perfectly; the facial nerve is a comparatively thick and complex one; the tumour’s in a tricky place that would necessitate mucking around with my hearing to get at it; there’s a risk of damage to the other nerves in the area; you’re left with total facial paralysis while the grafted nerve regrows; it’s usually a year before you’ve any idea if it’s worked; and, even if it does work, the surgery won’t give you back full facial function.

So, because in my case the effects of the tumour were less uncomfortable than the effects of the surgery to fix it, since 2009 I’ve been having yearly scans, with the neurosurgery and ENT consultants keeping me under observation.

The great news is that it hasn’t grown in five years – it’s “dormant”. It was about 5mm in 2009 and it’s about 5mm now. It’s not a miracle. But it’s reasonably uncommon. The consultants rightly keep pointing out it could kick off and start growing again tomorrow. I don’t think it will – and I keep believing that strongly. There’s a lot of good medical evidence for the power of positive thinking. Though of course I’m realistic about the long-term.

The first three years were quite unpleasant. Outwardly, most people simply see a slight facial weakness. Even your nearest and dearest find it difficult to understand quite how much it affects you. It’s hard to communicate with others when talking is uncomfortable and smiling gives you tinnitus; when you can’t communicate using facial expression anymore. It’s hard to concentrate with the cramping, the soreness, a near constant feeling of seasickness, a twitching eye, and insomnia. It’s tough when you don’t recognise your own face in the mirror and people think you’re frowning when in fact you’re trying to smile.

I found it draining, isolating and frustrating, despite being well-loved and well-cared for. My social life diminished – noisy places were difficult to manage, conversation was painful, avoiding self-absorption was challenging – but I was adamant that, long-term, this would not cut me off from the life I had before or from the people I loved. It’s a long, slow path to recovery and that’s always something I tried to bear in mind.

It took a couple of years for the symptoms to stabilise once the tumour went dormant. At this point, I asked my GP to refer me to a specialist facial palsy clinic. So in autumn 2012, I finally saw the team at the hospital. What a relief. For the first time in three years I was talking to medical staff about how to improve my quality of life, rather than how to manage a slow decline in facial function while waiting for surgery.

It really is a special service. The very first conversation was with the psychotherapist – someone who understood the particular difficulties associated with dealing with facial weakness. I needed that talk. Then I saw the consultant, who swiftly set up a regime of regular botox and facial exercises with the physiotherapy team. I’m not ashamed to admit I cried a little on the way home.

Two and half years later and life is very different. I have botox injections every four months, and in October 2014 a small weight was very neatly inserted into my eyelid to help it close. These, and the facial exercises have made small incremental differences, month by plodding month, which cumulatively have given me an eye that closes, some limited control of my cheek, better separation between my eye and my mouth and relief from those ill-mannered facial cramps and spasms.

Of course, facial movement is never going to fully return on the left side. Thankfully most people now don’t notice much difference in my face – not even the slightly droopy eye after the weight was inserted. Most importantly I can happily live with it now.

I continue the exercises, more grudgingly than I should, hoping to make further progress and slow lop-sided future ageing. It’s like facial archeology, trying to find, with your mind, long withered muscles through the tumourfied tangle of 7,000 or more mangled nerve fibres at the root of the nerve, inside my skull, mostly firing off signals in all the wrong directions to all the wrong muscles …. or not at all.

It’s the facial equivalent of trying to move your left leg, and instead all your arms, hands, feet and legs flail and cramp uncontrollably and your bladder empties.

Yet never forget that it’s well worth digging through those face, neck and head cramps, the synkinesis and noise-laden spasms beyond your control. Those facial exercises and botox have helped me find, isolate and slowly strengthen some key muscle groups and unpick the worst of the faulty connections.

It can be intensely difficult, sending your mind to a part of your face and with infinitesimally small movements, sometimes even none at all, seek to unscramble those crossed signals and push new nerves to regrow, slowly, imperceptibly, over months, til suddenly, sometimes with a sting like a needle-prick, something new fires, spasmodically at first, then over time, as the new cells harden off, more smoothly, more strongly, more reliably.

The botox injections help the process by knocking out a load of rogue spasming from the less important muscles – in my case synkinesis in my forehead, neck and chin were particularly troublesome; and now that the eye closes properly after the weight insertion, my eyeball no longer does a dizzying roll (Bell’s Phenomenon) with every failed blink. Sleeping is a lot easier too!!

It’ll probably only ever be the basic, binary, functional – eye open, eye close; smile on, smile off – but I am grateful. It’ll do me. What I have now is so very minor compared to the discomfort I had before – and in the bigger picture, nothing compared to what others have to deal with in life.

However, there’s one thing that keeps bothering me.

Owing to a quirk of evolution, the facial nerve controls the shortest (pub quizzers, remember this!) muscle in the human body, a 1mm bit of tissue (the stapedius muscle) which pulls on one of the ear bones, which automatically tenses to protect your ear drum from loud noises.

Somewhat regrettably, when I smile and talk the signal to one (or more) of the 10 (or so) smiling muscles fires off to the stapedius muscle in my ear at the same time. It feels like there’s a bunch of little pixies driving a small tube train through my head. And I haven’t had great success separating the different smile muscles from each other, let alone finding the one(s) which cause the train noise.

It has quite literally been doing my head in for five years!

When I smile … it hurts, just a little. It makes me feel ever-so-slightly sick – and somehow interferes with thinking processes so my brain freezes momentarily, like those sounds that stupefy you. There is a price to every smile.

With time one succeeds in shoving this discomfort mostly into the subconscious and ploughing on. It’s really not that bad, honestly. It can make human interaction a bit tiring sometimes though, which is why sometimes I still have to duck out of social situations. I find children especially tiring – because they make me smile so much!

But, BUT, but – you’ll be pleased to know that even five years after the tumour stopped growing, and two and a half years after starting with the facial palsy clinic, progress continues. As I mentioned at the beginning, I made a breakthrough while laid up with that cold, writing this piece for the website, doing my facial exercises.

(Drumroll)

After years of mostly fruitless mental searching, I found it. Mindfully found it and isolated the connection to it. That one muscle in my cheek (the buccinator, it turns out), that causes the rogue pulse up to my ear muscle when I smile. Shut. The. Front. Door. Yes.

I was surprised, elated, excited and happy as a pig in the proverbial to find it.

It’ll take a fair while and a lot more work to resolve it – but it’s the first step to a smile without noises in my ear.
Never stop working at it. It’s worth it.

I’m aware that so far I’ve been lucky compared to many others. I look at other case studies and shudder at what people have to cope with. And I know that all the progress I’ve made could evaporate in a few weeks if the tumour starts growing again. I know the odds are stacked against me and in the long term I’m likely to have to face much tougher times.

But none of us know for sure what the future holds. In the meantime, I’m counting my blessings, hoping for the best, taking a deep breath and getting on with it as best I can. And honestly, while I wouldn’t wish this experience on anyone, I’m immensely grateful for what I’ve learned about myself over the past five years.