#WhyWeDoResearch - Andy's Story
Andy was referred to the multi-disciplinary facial function
clinic at the Manchester Royal Eye Hospital after being diagnosed
with the rare genetic condition, congenital cholesteatoma.
It's nearly 10 years ago now, but one day after mountain biking
in the cold, I came in to get a shower and I had difficulty moving
my mouth; that's the first time that I noticed that there was
something wrong. My face gradually became more paralysed, and
I experienced buzzing and the gradual loss of hearing in my right
The paralysis meant that people sometimes gave me a second
glance. The right side of my face drooped and I was unable to blink
my eye. It was most pronounced when I smiled, because the
side of my face which is normal over compensated for the side that
After being referred to Manchester Royal Infirmary, a MRI and CT
scan suggested that there was a growth on the nerve around my
ear. I underwent an operation to remove it, and it was then
that the doctors could see that my condition was actually
cholesteatoma (an abnormal collection of skin cells inside the
Since having the operation, I've been referred to the
multi-disciplinary facial function clinic at the Manchester Royal
Eye Hospital. Being based on research into the needs of
patients with facial palsy, the clinic brings together consultants
specialising in ophthalmology, otolaryngology, plastic surgery,
physiotherapy (The Lindens Clinic), and psychotherapy (by
referral). It has many benefits for me, not only am I
presented with a number of options to help manage my condition, but
it also reduces the number of visits required, making it easier to
balance alongside my busy job as an environmental health
My ophthalmic surgeon suggested I try Botox to improve the
symmetry of my face. I knew that Botox was used cosmetically,
but the consultant explained that it had also been used clinically
for spasms of the face and that trying it for my condition was
Botox works by relaxing the good side of my face and the
treatment lasts for around four months each time. A side
effect of the Botox is that I'm unable to smile, so I have to let
people know that I'm pleased to meet them with a cheerful voice and
using other body language. But for me, improves the symmetry
of my face and the pros definitely out weight the cons and I'm
enjoying an active life.
I was diagnosed at 44, so I think it may have affected me more
earlier in life; for example, when you're forming
relationships. Sometimes I do worry what people will think is
wrong with me, but the best thing you can do is be open when people
ask. It's thanks to the fantastic support from my family,
friends, work colleagues and specialists at the facial function
clinic that I've been able to manage so well.
I hope that sharing my story goes towards raising awareness of
the condition, and I've even used my passion for cycling to
undertake a sponsored bike ride to raise funds for the clinic.
Learn more about research at
Manchester Royal Eye Hospital, and the ways you can
get involved with research.
About the multi-disciplinary facial function clinic
The services delivered by the clinic are the result of research
into the treatment needs of patients who have experienced facial
palsy (paralysis), a highly disabling condition, which affects
around 1 in 5000 people and at its worst can lead to blindness.
Our research established that treating the functional problems
(e.g. eating and drinking) of facial palsy alone is not enough, as
over 30 per cent of people with facial palsy experience significant
levels of anxiety and depression.
By enabling patients to receive care from several specialists at
the same clinic, the Manchester Royal Eye Hospital has saved each
patient around five visits (equivalent to over 300 miles of travel
and 8 hours of travelling time).
The clinic also drives cost savings for the NHS, which provided
clinicians with the funds to pioneer an innovative application of
Through our research, we have demonstrated that one Botox
treatment can improve the confidence and speech of patients with
facial palsy for around four months. Botox is now available
to patients who would benefit from the treatment through our
multi-disciplinary clinic, and has this approach has been adopted
elsewhere in the NHS (e.g. Queen Victoria Hospital NHS Foundation
Trust in East Grinstead, West Sussex).