Health: The only noises I could hear were in my head: People don't go deaf in their twenties, thought Jessica Gorst-Williams. Then the birds stopped singing and the dizzy spells began

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Indy Lifestyle Online
SIXTEEN years ago, soon after the birth of my first child, I started experiencing symptoms of deafness. Not that I recognised them as such. Like many people when they first have hearing loss, I explained away my symptoms. When I mistook the bleating of the sheep in the field next to our house for my new baby's cries, I blamed maternal instinct. When I couldn't hear the television, I turned it up louder. When the volume knob wouldn't budge any further to the right and I still couldn't make out every word, I hired a different set.

Two televisions later, I conceded that my ears might need syringing for wax, a common cause of temporary hearing loss. But the syringing made no difference. On a further visit to the doctor I was swiftly shunted into the surgery for a hearing test. It showed I had substantial hearing loss. By this time I was also being bombarded by sounds in my head that kept me awake at night, and had frequent dizzy spells.

My delay in facing up to my hearing loss was only possible because the common yardsticks for measuring sight, smell and touch do not apply in the same way to hearing. Had the church clock gradually become a blur, I could not have fooled myself in the same way. Had my favourite perfume lost its aroma, or my arm its feeling, I would have had to take notice. But when I did not hear the cuckoo make its usual spring debut, I assumed the bird had simply missed its cue. Besides, deafness is so unglamorous, particularly in the young - and I was in my early twenties. Imagine how diluted the eroticism of Jane Eyre would have been had Rochester become deaf rather than blind.

It was some time before I braced myself to see a specialist. He told me I had otosclerosis, a disorder of the bones that vibrate and transmit sound in the middle ear. My right ear was so badly affected that it would soon be past the stage where a hearing aid would be any use. However, he suggested an aid that would serve for both ears. It would operate from the left ear - until that too had deteriorated so much that there were no sounds to pick up there either - and had a special cable that would loop round the back of my neck, conducting some sound to my right ear.

'Everyone gets deafer as they get older,' the specialist told me, himself dripping with hearing aids. 'You, though, will get deafer than most.' He suggested a lip-reading course. As a parting shot he added: 'Don't have any more children. It will make it worse.' Apparently, hormonal changes associated with pregnancy can aggravate the condition. I have never regretted the fact that I defied him and had a second child, Hugo, now 10 years old. His voice, as my hearing grew worse, became a legend for its loudness.

As the years went by, the noises in the head, or tinnitus, increased. I found this even more disagreeable than the deafness. Using other sounds to mask the inner noises - an electric fan heater for example - was sometimes the only way to tolerate it. And the noises acted as a barometer: they always grew worse if it rained, or when bad weather loomed.

My social life started to disintegrate. Hearing loss, like any other disability, marginalises and isolates the victim. Conversation moves to a timing dictated by people with perfect hearing; it subtly excludes those who have to work out first what was said, formulate what to say back and then concentrate on pronouncing it correctly. An inability to hear speech means the sufferer loses touch with accurate pronunciation and has to struggle to keep their voice normal. There is also a problem with eating. Dealing with a plate of food while lip- reading can result in a reputation for table manners akin to Attila the Hun's. Hearing loss can even make writing more difficult: missing out on the fluency of conversation means sentence formation becomes more laboured. Learning or speaking foreign languages is impossible. I also found the elderly to be most intolerant of deafness in the young. Perhaps they see it as usurping their own prerogative. If they are related to the sufferer they see it as an insult to their genes.

Otosclerosis tends to start in the early twenties, when most people are carving out an identity. The lack of self-confidence that my hearing loss caused meant I demoted myself to more humdrum jobs: I began typing from home rather than looking for something more ambitious.

When I eventually learnt about an operation that would give me a good chance of regaining all my hearing, I was discouraged from going ahead. Tales of famous people who had had the operation and gone completely deaf abounded. The woman teaching me lip-reading sent me to a counsellor who warned that sometimes, weeks after an apparently successful operation, all remaining hearing could drain away. I was even told, incorrectly, that the operation might cause brain damage.

Before committing myself either way I took a holiday in France. When I arrived at Gatwick the taxi I had ordered was not there. I dialled directory inquiries for the cab company's number, but the telephone had no amplifier aid for the deaf and I could not hear the reply. All I could hear was loud noises - coming from the airport and my head. In the end I went to the information desk. 'We've been asking for you over the PA system,' they said. 'Didn't you hear?'

I decided I had to go ahead with the operation on my right ear and it was carried out privately in November 1990. I was in hospital for four days and spent a week in bed at home. The main problem was dizziness and attacks persisted for about a month afterwards. At first I was frightened the surgery had not worked, and my hearing did take six weeks to return. Afterwards, I still suffered some tinnitus. But, after 13 years of hearing loss, I felt life had returned to normal.

The first time I drove the car after my hearing returned, it made such a din that I stopped it several times, thinking there was an engine fault. I found it difficult to adapt to the barrage of sounds in the local town. For the first time in years I could hear birdsong. I could even pick up every word on the radio and television.

I can't say everything was just as it always had been, though. Having a severe hearing loss is like living in another country, and the experiences there, good or bad, have coloured my life for ever.

SURGERY CAN BRING BACK THE SOUND

Otosclerosis is a common form of deafness in young people, affecting about 2 per cent of the population. It tends to run in families and is thought to occur more often in people with fair hair and blue eyes. However, it is also found frequently among people from India. Both sexes can suffer from the disorder but because it is affected by hormonal changes, otosclerosis is often more severe in women and worsens in pregnancy.

The disorder occurs when the stapes - the innermost of the three tiny bones of the middle ear - becomes fixed by an overgrowth of spongy bone, so that it can no longer vibrate and transmit sound from the outer to the inner ear. Why this happens is a mystery: no other bone in the body is similarly affected. The disorder can affect one or both ears, but not necessarily at the same time or to an equal extent.

In the early stages, external sounds are muffled; hearing is often easier when there is background noise. Sufferers may also find it easier to distinguish what is said on the telephone than when someone speaks to them face to face. The disorder is often accompanied by tinnitus, or noises in the head.

According to Ellis Douek, consultant otologist at Guy's Hospital in London, otosclerosis occurs typically in young people, often in their twenties. 'They begin to develop a very mild hearing loss which at that stage is not recognised. That's quite important because it results in psychological problems - people become more distant.'

In young women, he says, the disorder is often recognised when they become pregnant and the hearing loss gets significantly worse.

The operation that can correct the disorder, called a stapedectomy, was developed in the late Fifties. It is performed under general anaesthetic, and involves removing the stapes and sealing the resulting hole in the inner ear with a vein graft taken from elsewhere in the body. A small plastic prosthesis is then inserted to act as an artificial stapes. One end is inserted at the entrance to the inner ear, the other is attached to the incus, the middle bone of the middle ear.

Stapedectomy is successful in more than 90 per cent of cases. Complications are rare but serious: they include total hearing loss, damage to the facial nerve, alteration of taste and perforation of the eardrum. Because of these risks, the operation is usually carried out on one ear at a time.

(Photograph omitted)

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