When Jan was told she was at risk of being left with facial palsy after acoustic neuroma removal, she wasn’t fully prepared for the functional problems that would arise, here she tells her story.
In 2007 I had the opportunity to take a redundancy package from my job in a large central government department. My husband and I were intending to relocate to France and he carried on working until such time as our house was sold and we were ready to go. During my working life, I had achieved a number of promotions and had held some interesting, high profile posts, including representing the UK Government in various European countries and directing internal investigations into staff fraud and equal opportunities complaints. My last two jobs were more general management in nature, involving a large number of staff (more than 400) across a number of sites.
Jan after acoustic neuroma removal
Unfortunately, just as we sold our house, my husband became ill and our plans were put on hold. Before we had the opportunity to revive our plans, I was diagnosed with a large acoustic neuroma which was only treatable by surgery. I was warned that there was a risk of my having facial palsy following the surgery, but in all honesty I didn’t grasp what this might mean in reality. At the end of the 10-hour operation I was told that my facial nerve, though bruised, was intact and there was “cautious optimism” that it would function normally “sooner rather than later”.
Unfortunately this did not prove to be the case, and over the next few months I began to learn exactly what facial palsy is and how it affected every aspect of my life.
I had grasped that it would alter my appearance, but what I hadn’t understood was how this would affect eating and drinking. I have always had a small mouth (well on the inside anyway), but now I could only eat very small quantities of mainly soft food and even if I managed to get the food into my mouth, there was absolutely no guarantee it would stay there! From the day I was discharged from hospital I made a conscious decision to live my life as normally as possible, but inevitably a lot of time was spent explaining to people how I had ended up with a crooked face. It also meant making some very careful choices about food when eating out with friends. I would strongly advise against soup, spaghetti or yoghurt as it can get more than a little messy. I also learned never to go out without several straws – drinking liquids is challenging. Although I did continue to have a fairly active social life, I will admit that I turned down some invitations (in particular a wedding invitation) because I was conscious of my appearance and certainly did not want to be in any photographs.
Probably the biggest shock for me was the effect facial palsy had on the eye on the affected side of my face. This caused probably more anguish – and unplanned hospital visits – than the other aspects of facial palsy. For some months my eye was sewn closed until a gold weight could be inserted to make it close and avoid any further damage. I had developed a cataract and my left eyebrow was a lot lower than it should have been. This posed a particular challenge to my hairdresser when cutting my fringe.
Where I was lucky, was in getting an early referral to a specialist Facial Palsy Clinic in the south of England. The support I received from this multidisciplinary team kept me going during some very dark days and knowing that however bad I looked, something could and would be done helped me through. I joined a support group and made some great friends as well as getting the reassurance that I wasn’t alone in having some fairly irrational fears and anxieties. I also agreed to do some filming for the promotional video for the Facial Palsy UK charity and this helped me to feel I was contributing something.
Jan after Labbé surgery
I had the Labbé surgery in November 2012. My only concern before the surgery was that it wouldn’t work, but happily this was an entirely misplaced fear and although there were some pretty awful things going on in my life, at the same time I feel better and more optimistic than I have for a long time. The benefits were immediately apparent despite the inevitable swelling, and there was really very little pain or even discomfort. I have continued to carry out the exercises to improve the functioning of the muscle, although I will admit perhaps not always as often as my therapist would like – it’s just not always possible or the right place.
I have had further procedures carried out to improve both the appearance and functioning of the affected eye. My left eyebrow is now nearly in the right place and the eye looks better than it has done since the operation to debulk the neuroma. I am having further work to improve the appearance of my mouth soon and at last feel as if I am getting my life back on track. Some food is still difficult for me – and not advisable to eat in company – but my speech ( apart from “p” and “b”) is pretty normal and best of all, most people don’t even notice there’s anything different about me when I first meet them. Things can only get better from now onwards.
Update
Jan agreed to be featured in Facial Palsy UK’s first video explaining what facial palsy is and how it can affect people (shown below).
Jan also became a Trustee of Facial Palsy UK in October 2016 bringing a wealth of experience to this role.
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.