When a stiff jaw means you're losing your sight

Dorothy Byrne


22:29 GMT, 16 July 2012



22:29 GMT, 16 July 2012

Ken began to lose his sight for a minutes at a time

Warning sign: Ken began to lose his sight for minutes at a time

Ken Bolton’s problems began when he sat down to eat his lunch one day and found he couldn’t open his mouth. ‘My jaws were just stuck,’ says Ken, 78, from Middlesbrough.

As he didn’t feel ill, he avoided solid food. But after two weeks with no sign of improvement, he went to his GP, who suggested seeing a dentist. The dentist could find nothing wrong, so referred him to a hospital dentist.

Meanwhile, Ken began to lose his sight for a few minutes at a time. His optician reassured him there was nothing to worry about.

However, a few days later, Ken went blind in his right eye three times in one morning. He went to A&E where he was examined but advised to wait for another hospital appointment a few days later.
Increasingly concerned, Ken started to keep a diary of his symptoms. Over the next four days, he went blind 35 times. His GP diagnosed a mild stroke, wrote a prescription for a large dose of aspirin and arranged another hospital appointment.

As soon as he walked into his house, Ken went temporarily blind in both eyes.
When he finally saw the hospital dentist, he suggested Ken’s stiff jaw was due to a problem with his dentures.

Five weeks after his ‘stroke’, Ken was seen by a consultant. ‘She had all my medical notes and I don’t think she was convinced I was ill,’ he recalls. ‘So I got out the diary.’

The consultant took one look at it and told Ken he needed treatment urgently. For Ken had giant cell arteritis (GCA), inflammation of the arteries which supply the head; this then blocks the blood supply to the optic nerve. Key symptoms include sudden blurred vision, painful headaches, a stiff jaw and a very tender scalp.

The condition can cause permanent blindness — it is the most common cause of acute blindness in the UK and it can develop rapidly, causing blindness in just days. Around a quarter of sufferers, 3,000 people a year, lose some sight, some of them going completely blind.

If they’d got the right treatment in time, their sight would almost certainly have been saved.
GCA is related to polymyalgia rheumatica, an inflammatory illness that causes severe pain and stiffness in the muscles — which affects thousands of Britons every year; around a tenth of them will develop GCA.

I developed giant cell arteritis more than two years ago and a GP advised the wrong treatment. Luckily, a doctor I knew told me I needed a massive dose of the steroid prednisolone to reduce the inflammation and I suffered no loss of vision.

When I wrote about my experiences in the Daily Mail, I received many letters from readers who’d also received either the wrong treatment or diagnosis, with often heartbreaking results.

Eye test

Blind Ken's optician said his sight problems were nothing to worry about

As head of News and Current Affairs at Channel 4, I am used to covering stories about people getting terrible, preventable diseases in developing countries, but it horrifies me that so many people in Britain are going blind unnecessarily.

What’s so surprising is it’s not just GPs who are getting it wrong; doctors in A&E, even hospital eye clinics, are failing to spot symptoms.

Barry Peck, a former office worker from Nunthorpe, Middlesbrough, used to love cycling in the countryside. Now he cycles in a shed to keep fit on a bike adapted by his family. He is virtually blind after doctors failed to realise he had GCA.

What is remarkable about Barry’s case is he was so ill he was hospitalised with symptoms that included several signs of GCA — as well as double and blurred vision, he had a severe headache and a sensitive scalp.

He was seen by an ophthalmologist, but after three days, Barry, 75, was sent home, diagnosed with facial cellulitis (a deep skin infection in the face). ‘He went home and lay down on his bed in the dark with the most terrible headaches,’ says his wife Brenda.

After two days, Barry was taken back to A&E and finally GCA was diagnosed, but by then most of his sight was gone for good. He can now see only people’s outlines and needs constant guidance outside.

Dennis Pillin’s story is especially tragic. In November 2009, Dennis, from Southend, Essex, lost the sight in one eye through GCA, but lived a full life for several years.

Then he woke one morning to find he couldn’t see properly in the other eye. ‘He realised at once it was GCA and knew he could go blind,’ says his daughter-in-law, Angela.

Dennis called an ambulance but paramedics advised him to go to the eye clinic when the hospital opened. ‘When we got to the eye clinic, they said they were inundated and refused to see him,’ says Angela.

‘He told them he could go blind if he didn’t get treatment. He begged them to see him. He even said he would pay. I was crying we were so desperate.’

After two hours, Dennis was seen. Three doctors at the hospital examined him that day but none spotted the giant cell arteritis, despite his medical history.

Next morning, he was found semi-conscious in bed — he’d had a severe stroke. He was taken to hospital and the doctors treating his stroke finally diagnosed GCA. By then, Dennis was virtually blind. He died a few months later. His daughter-in-law cries as she describes her feelings. ‘The fact that he couldn’t see made his last months so hard for him.’

If doctors recognise the symptoms, the outcome can be so different. Hannah Padbury, from Thorpe Bay, in Southend, runs a local helpline for Polymyalgia Rheumatica & Giant Cell Arteritis UK, the charity which campaigns for people with the condition.

Dennis was diagnosed with giant cell arteritis after losing the sight in both eyes years apart and suffering a severe stroke

Tragic delay: Dennis was diagnosed with giant cell arteritis after
losing the sight in both eyes years apart and then suffering a stroke (posed
by model)

When she herself developed a stiff jaw and eye problems, her GCA was diagnosed quickly by her hospital rheumatology department and she was given steroid infusions.

‘I hear lots of stories which horrify me. One lady had done everything to try to get help but ended up losing the sight in one eye. Doctors need to be far more informed.’

By an extraordinary coincidence, I was at a meeting of the charity’s trustees when a helpline call came in from a woman who’d gone to a leading London hospital having gone blind in one eye. The hospital said her blindness was caused by GCA, but it was too late to do anything.

Yet without treatment, the woman could have gone blind in the other eye, so the helpline told her to go to another hospital and demand treatment.

A research paper about to be published makes depressing reading. It looked at the cases of ten people who lost sight and found the average time between the first symptoms of GCA and treatment was nearly two months. Often much of the delay was caused by the sufferer not realising their sudden blurred vision and severe head and jaw pain needed urgent treatment.

But there were also problems with diagnosis and treatment. After their sight loss, three of the ten people ended up in residential homes. Yet timely steroids — which cost a few pounds — can prevent what the paper calls ‘large healthcare costs and catastrophic psychological and social costs’.

The authors say there must be increased awareness of GCA and recommend a mandatory ‘fast track’ treatment. The good news is this has now been piloted in Southend — GPs have been taught about GCA and advised to send people with symptoms to specialist teams for fast treatment.

Over previous years, a quarter of 28 people seen at hospital were diagnosed with GCA only after suffering sight loss. But since the system was introduced, just one in 14 people seen had lost vision before diagnosis. The scheme was not expensive as its key features were educating doctors and devising new systems.

This is a small pilot scheme, but Southend University Hospital rheumatologist and PMR specialist Professor Bhaskar Dasgupta is thrilled by the results. ‘The swift treatment has transformed outcomes. The time from start of symptoms to start of treatment has reduced considerably, from 46.5 days to 31.5. However, there is progress still to be made in terms of educating patients to see their GP earlier if they have suspicious symptoms.’

A group of experts is about to start a formal medical and financial evaluation of the Southend scheme to see how something similar can be rolled out across the country.

Lord Wills, a former minister, has taken up the issue of GCA after reading Daily Mail articles about people going unnecessarily blind. ‘It shocked me to read that sufferers, who are often elderly, so frequently have their symptoms dismissed as the aches and pains of ageing.

‘It is terrific that the Mail has exposed what is happening. This isn’t about spending lots of money. The failure to prevent blindness is costing Britain hundreds of millions of pounds a year because people who lose their sight later in life become dependent and can end up needing full-time residential care.’
Lord Wills started campaigning about the issue, organising a debate in the House of Lords. That revealed the Department of Health didn’t even know how many people go blind each year as a result of GCA.

The Department of Health has now agreed to take part in an evaluation of the Southend study.
All it can take to stop someone going blind is 60 milligrams of prednisolone — that’s around 1.20 to stop a life being wrecked and many tens of thousands being spent to support someone who has gone blind.

It was 60 milligrams of steroid that I believe saved me. But I am one of the lucky ones. I think of Barry Peck cycling in his shed. He says: ‘It makes it harder to come to terms with what’s happened when I know that my sight could have been saved if I was diagnosed earlier.’

For more information about giant cell arteritis, go to [email protected] or call 0300 999 5090.