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A brain tumour left Whistles fashion guru Lucille Lewin unable to smile but a new facial massage gadget is offering hope
In November 2009, design guru Lucille Lewin, founder of the legendary fashion chain Whistles, experienced the odd sensation of a numb tongue. Initially, she was not unduly worried – this was just one of a number of symptoms that had appeared and then disappeared almost as quickly over the preceding years.
At the time, Lucille and her husband Richard were running the Chiltern Street Studios, a fashion agency in London, having sold Whistles in 2002.
She says: ‘Several years before, I had an odd feeling of my ear being full and a decided loss of hearing on my right side. I know I should have had it checked out at the time but I was so busy.
Whistles founder Lucille Lewin believes stress was a huge factor in her illness
‘I also remember a strange experience five years ago when I awoke in the middle of the night with a terribly loud buzzing in my ear. It felt as if an insect had flown in and was trapped.
‘I took myself off to my nearest accident and emergency department to have it checked. There was, of course, no insect but severe tinnitus was diagnosed. The noise stopped an hour later.’
Lucille, 63, believes these were early signs of the problems to come. When the tongue numbness persisted for a few days, she went to see her dentist.
He referred her to a consultant otolaryngologist – a type of ear, nose and throat specialist – who suggested she have an MRI scan. This revealed a 1in tumour growing on the trigeminal nerve, which controls the muscles of the face.
No one knows what causes acoustic
neuromas, but Lucille believes the sale of Whistles may have been a
trigger. She founded the company in 1976, and helped launch the careers
of designers John Galliano and Jean Paul Gaultier
Every year about 1,400 Britons are diagnosed with this type of non-cancerous growth – known as acoustic neuroma –with women affected more commonly than men. Although not usually life-threatening, symptoms including loss of hearing, disruption to balance and facial numbness can disrupt day-to day life.
If left untreated, it can cause hydrocephalus – a build-up of fluid on the brain – which can be life-threatening.
No one knows what causes acoustic neuromas, but Lucille believes the sale of Whistles may have been a trigger. She founded the company in 1976, and helped launch the careers of designers John Galliano and Jean Paul Gaultier.
‘The takeover was a very difficult time for me,’ she admits. ‘The company was very much my baby. It was a time of unbelievable, unrelenting shock and stress. I am usually very controlled in business. I felt powerless, and that was one of the hardest things.’
Lucille Lewin helped launch the careers of John Galliano and Jean Paul Gaultier
It was seven years since the business was sold when she was diagnosed – and the consultants told her that the tumour could have been growing all that time.
‘I do not feel this is a coincidence,’ she says. ‘I so wish that we had joined the dots earlier. The tinnitus, the feeling of fullness in one ear and the one-sided hearing loss should have sounded the alarm bells. To be honest, I was relieved it wasn’t cancerous.’
But the diagnosis galvanised her into action. Lucille recalls: ‘A close friend in Los Angeles had been operated on with the same neuroma. I called her immediately and got all her advice. She put me in touch with her surgeon, who is reputed to be the most respected as regards this operation.
‘I asked his advice on who he thought the best person would be in the UK. He recommended David Moffat, an ENT surgeon, and neurosurgeon Robert Macfarlane at Addenbrooke’s Hospital in Cambridge.’
After meeting Mr Moffat, Lucille was reassured. But surgery could not happen immediately – the waiting time for surgery was six months. ‘Waiting was a terrible burden, but I spent my time getting as fit as possible for the long operation,’ she says. When finally the day came, the surgery itself was delicate and complicated.
Lucille says: ‘At eight in the morning, I was wheeled down for surgery. /01/21/article-0-116556F7000005DC-915_468x321.jpg” width=”468″ height=”321″ alt=”Whistles was founded by Lucille in 1976 but has since been sold ” class=”blkBorder” />
Whistles was founded by Lucille in 1976 but has since been sold
The operation took 11-and-a-half hours, as the tumour had to be scraped away from the facial nerve through an incision behind Lucille’s right ear. ‘I was told afterwards that my ear had to be surgically removed and then replaced,’ she says.
Inevitably there was some damage to the facial nerves. Lucille had been warned that in the immediate aftermath of the operation she would suffer headaches, and her hearing, speech and facial movement would be affected.
‘I came round to find one half of my face was paralysed and I couldn’t eat or close my eyes,’ she says. ‘It was frightening but I was just so thrilled to wake up. I was so lucky not to have bad headaches or nausea from my balance nerve having been cut.’
The mother of two remained in hospital for a week and felt very weak for three months. ‘I could not shop, cook or care for myself, and I am grateful that I had my family around me,’ she says.
At first, smiling was impossible and eating was a challenge. Fortunately, she found a good rehabilitation centre in Manchester called the Lindens Clinic, and uses a trophic stimulator, a machine that uses mild electrical currents to exercise parts of the face that remain immobile.
Lucille says: ‘I also have weekly acupuncture. My smile won’t ever be what it was, I think. I can’t produce tears in my right eye, and I have also lost my hearing on that side.’
She walks, swims and does yoga to build up her strength, and is now taking a ceramics degree. Lucille says: ‘If something stresses me today, I detach. I have a better understanding of life, and I am far more appreciative of the gifts it brings.’