Andrea developed facial paralysis after surgery to remove a rare benign cyst called a granuloma.
Around 2002, I started getting headaches and was struggling to concentrate at work, I was 26 and working in a sales office. On consulting my doctor, I was repeatedly told it was normal after suffering from meningitis a year previous, working full-time, and having a 3-year-old little girl.
When coming out of a shop one day in 2003, trying to remember what it was I had forgotten, only to realise it was my daughter, my then husband insisted I was referred.
They found a granuloma in my skull the size of a 50p, a rare benign cyst that occurs in a part of the skull next to the middle ear. Under the referral of a London hospital and professor, and six weeks pregnant with our second child, I was told it would be difficult to operate due to the position of the cyst. However, within weeks, my marriage ended, I suffered a miscarriage at 10 weeks, and at just six stone was told they couldn’t operate until I had put on weight.
Andrea and her youngest daughter in 2014
They scheduled the operation twice, which I kept cancelling. I was a single mum of a 3-year-old and operating meant losing my hearing in one ear, being hospitalised in London for six weeks whilst learning to walk again, and a rather scary risk of paralysis. All in all, I preferred to take my chances and manage my work and stress levels.
I managed to last until 2015, some 12 years, before it started changing, and I was told by my neurologist locally in Maidstone that I needed to be referred to the “surgeon’s surgeon” to have it removed.
2016 – Andrea in hospital after surgery
Going home that day and telling my family was the hardest thing I remember getting through. I hadn’t seriously thought my concerns over headaches and concentration were anything to worry about. I’d been getting dizzy again and thought it was just another little check-up which would rule out anything untoward. I’d remarried and had another daughter by then, and with the support of private healthcare, went into surgery in February 2016 in a London hospital.
Swollen after the operation
I had both a neurosurgeon and ENT specialist, operating, and the surgery itself went very well, with new techniques found that meant I didn’t lose my hearing or have to spend more than six days in hospital. However, my stay was not pleasant, constant changeover of nurses meant I never had any continuity of care, to the point where my husband refused to leave the hospital overnight so that he could monitor my care. My bandages were left soaking in blood for two days where my wound had opened back up, only for my surgeon to return to put his finger on it, add some glue and it was all sealed again, enough for me to go home.
Facial paralysis developed
My head was very swollen by then, my face puffy and hair matted with blood, but I was just grateful to finally be home. 24 hours later, I was taken by ambulance into our local A&E, with suspected stroke or Bell’s palsy.
I was given steroids, but only on the cusp of the 72 hour recommended timeframe, and the right side of my face had dropped and now had no movement at all. I was diagnosed with Bell’s palsy and told it should recover a few weeks later. What I had in fact was post-surgical facial palsy.
After the operation
It took nearly two months before I had any sign of movement, and I still remember the day when I could finally open my jaw just enough to eat a malteser. Reading everything I could, I knew it was very likely by then that I would have lasting damage. I’d been virtually housebound, not able to go out due to the wind in my eye that wouldn’t close, and a sore face from all the surgical tape I used, to try and keep it shut. I’d lost nearly two stone due to not being able to eat much more than lumpy soup, and at that time, I wished I hadn’t made it through the surgery at all.
Two weeks after surgery, I’d managed to be brave enough to attend a friend’s wedding and got an enormous amount of support from everyone there so I didn’t feel too conspicuous. But five months on, having to return to work on a full time basis, I had very little support or understanding as to my condition on a day-to-day basis. It’s not something anyone was really familiar with, and it seemed that as long as I looked okay, I must have been fine, as it was how my face looked, that people tended to judge my recovery on.
I’d been referred to a plastic surgeon and to a facial palsy clinic in Sussex by then, and I honestly wouldn’t like to say where I would be today without their ongoing care. The clinic was literally a life saver, teaching me what exercises to do and how to care for my face.
I read everything I could find and continued with the massaging and the exercises. I have Botox twice a year, but it’s a rollercoaster of emotions, as it wears off a good few months before I have them done again, meaning you are continuously having to get used to different ways your face moves.
The trauma of my hospital stay and operation have never gone away. When my brother was in the hospice with cancer, I had panic attacks just being there and seeing the medical equipment.
I am quick to panic these days, the uncertainty of everyday life can make me anxious, especially in new circumstances. My brain works slower and I have no idea how much of my daily challenges are down to facial palsy or just getting older. My face on the right side puffs up every now and again, as though the circulation is poorer, my jaw aches on a daily basis. I get cramp in my neck up into my ear, if I yawn too hard or laugh too much. I find it harder to hear and can’t hear anything at all whilst I’m chewing food. I find it hard to concentrate in noisy environments, and often hear the sounds of my heartbeat, or blood pumping, in my right ear and have bouts of tinnitus from time to time.
I’m one of only a few colleagues that have found working from home through Covid has made a huge improvement to my mental and physical health. I don’t have to struggle with the air conditioning or noisy environment. I can use heat on my face, massage it more, and on days where my face and jaw really ache, I can choose to limit my meetings and conversations.
Some days are harder than others, but I never lose hope that with the daily massaging and exercises I can continue to improve. It’s hard to accept it will never recover completely and I miss my old face and confidence, but more than anything I wish I didn’t always have to explain myself or my condition. It’s such a battle to have your struggles understood both in my personal life and in the workplace and without it feeling like you’re being sensitive or vain, when it’s just a case of understanding how my brain now works differently. My wonderful neurologist, who has been there for me since the beginning and continues still to support me, always uses the analogy that my brain is like a jug, and half of it is now used up trying to interpret all the signals to move my face and hear with, so it leaves less room for it now to cope with the rest of everyday activities.
Everything you do day-to-day, requires your brain to make it work, and I wish people most of all, could understand just how exhausting each day is.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.