Malcolm’s Story

Malcolm experienced a facial palsy after a tumour was removed from his parotid gland. He urges people to seek help, here he describes the difference this help made to his life.

I would like to offer my comments concerning my recent experience of reconstructive surgery, at a hospital in the south of England, to my right side facial palsy condition. I hope that these comments will encourage anyone with similar disfigurement to seek help. I start with a short history of how I got into this pickle.

After quite a long period of gestation during which pain in my right side temporomandibular joint was increasingly painful and my lower right lip was losing muscle tone; initial investigations were in pursuit of a possible transient ischemic event (mini stroke). After scanning this was proved not to be the case. A subsequent routine visit to my dentist led to an urgent referral to the local maxillofacial consultant at my local hospital and he quickly diagnosed a metastatic adenocarcinoma on my right-side parotid gland. Shortly after diagnosis, in July 2014 he operated, in my case the procedure unavoidably required sacrifice of my facial nerve on that side. The surgery was otherwise successful. To date I have needed no chemotherapy nor radiotherapy – in this respect I am lucky. Another hospital is now monitoring my lung metastases. I continue to have paresthesia (pins & needles and hot/cold flushes) to my face and occasional zapping pains at several points on my head, I just have to live with this at present.

Over the following months the right side of my face slumped downwards, especially near my mouth, my nose twisted leftwards as did my philtrum, my right nostril closed so that I was not able to breathe through it. The drooping effect continued to deteriorate as my left-side dominant facial muscles pulled my face sideways. In order to talk clearly I needed to use my hand to pull my mouth into approximately its original position, a tiresome and somewhat unnerving experience for those to whom I was talking, to say nothing of my own feelings. I found eating a very difficult and messy experience so I tended to eat the minimum necessary, I lost weight. Also food congregated between cheek and gum and was difficult to dislodge and I found myself biting the inside of my cheek frequently, to my great distress. My right eye, lower lid, fell open and tears very frequently cascaded down my face since I could not blink to pump away the fluid.

My maxillofacial surgeon referred me to the local department of ophthalmology and a little later to a specialist facial palsy clinic. At this clinic I was surprised and impressed by the attention to detail to not only my face but also to my psychological wellbeing. I have to say I left my first consultation full of hope and expectation.

In late May 2015 I underwent a procedure at the specialist clinic to repair as much of the facial ‘droop’ as possible. After morning surgery I was visited in the evening by family and could immediately talk perfectly clearly without recourse to manually pulling my face into the best position, well why should I, it was all where it had been for almost all my life? I could even breathe through my right nostril, amazing. None of my friends or acquaintances can believe how all that surplus drooping flesh can have disappeared. Of course I had a couple of small scars near my lips and one up beyond my hairline near my right ear where the slings terminate but these scars are fading very well. Also my eating abilities are improved and improving. I am now able to get my tongue to dislodge food lodged along my gum and I bite my cheek less often. And what of my mental state? My psychological therapy at the facial palsy clinic, based on ‘Mindfulness’, prepared me to deal with my negative thoughts and so overall I am a pretty happy budgie.

I continue to be under the watchful eye of my brilliant surgeon who will decide whether any tweaks might be needed later in the year as things settle down. As he intimated at my most recent visit, some would have seen me as beyond help, but I can confirm that some do not.

As for my eye, my lower lid has been tensioned but there is further work planned for later in 2015 to bias the lid down (appropriate weight has already been calibrated) so it will close fully, some minor re-tensioning of the lid and opening up of the tear drain down to my nose is also planned. It may or may not cure the constant ‘tearing up’ but it should make life more comfortable.

I can honestly say that, including the tumour removal, I have needed no pain killers beyond that which was administered during my hospital stays, three or four days in each case. I continue to have my lung metastases, which were kindly bequeathed by my parotid tumour, but with my face pretty well sorted and my eye getting careful attention, I look forward with great confidence, my face is almost perfect (was it ever?) and continues to settle.

I continue to visit the gym for circuit training, to my weekly Pilates class, to fight the weeds in the garden, mow the grass, travel occasionally Prague and Valencia this year and hopefully North India next winter. At present am painting the outside of the house. It is much easier to find the mental resources to face the challenges these activities present when you receive the help I have received – I would urge all facial palsy sufferers to look for additional help, there are some wonderfully gifted and talented surgeons who have the great skill to bring us back to near normality, they can help you move forward, it’s worth making the effort.

Malcolm Smith
Age 73 years.

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.

Last reviewed: 23-10-2016    ||    Next review due: 23-10-2018