We are very grateful to all those who have shared their stories and explained so powerfully how cochlear implants have affected their lives. We hope you find their experiences useful, particularly if you or someone you know is thinking about having a cochlear implant.
If you have any questions after reading the stories or watching these video clips, please contact us and we will be happy to answer them.
Alan was a teacher but had to retire early due to a deterioration in his hearing. He describes how he has adjusted to his implant and the difference it has made to his quality of life.
David has both hearing and visual difficulties. He works in further education and recently received his cochlear implant following periods of severe tinnitus, balance problems and sudden hearing loss.
Hannah has been profoundly deaf since birth and now in her twenties has recently received a cochlear implant. We see her at work as a specialist teaching assistant with children.
Karen's hearing has gradually got worse since childhood. Karen and her husband talk about their quality of life since she received her implant.
Sr Linus's story
After a sudden hearing loss, Sister Linus had a cochlear implant in her left ear and had her initial programming early in 2019. She has written her story to share with others.
My cochlear implant story
I am Sr Linus, a Catholic nun.
It was 1989 when I work up one morning not hearing anything at all. I was then 36 years old. There was no pain nor discharge. Later on that evening I regained my left hearing, but the right side remained off up to today permanently. I was treated for colds and allergies with no improvement to my hearing (right). Scans and x-rays were done with both showing no problem.
I was then fitted with the hearing aid where the left was to transmit the message to the right side. Still there was no good, instead they gave me headache. I took them off.
Though it was devastating, hearing with one ear did not stop me from doing my nurse/midwifery duties. I used my left ear throughout.
I then came to England in 2004 (Shrewsbury). The audiologists there again fitted me with 2 different hearing aids. Still there was no change in my hearing.
Then in 2010, I came to Nottingham. Y My GP referred me to Ropewalk House where the audiologists have done a fantastic job to help me hear by changing or trying all types of hearing aids but with no improvement. Instead the hearing was going even lower. Again, scans were done which showed no problem in both ears.
In June 2017, the worst came to the worst. Woke up, and as it was in 1989 my left hearing was now also gone off. My superb audiologist continued to change or give me the best hearing aids but with no improvement. At the same time the team advised me to start thinking about a cochlear implant as they said that would now be the only option.
Assessments with explanations about the advantages and disadvantage were done. The disadvantages scared me especially when I heard I would no longer have my natural hearing. It was a hard decision.
After the left ear going off, everything became very hard. I felt isolated as now the communications were only done through writing. I used so many notebooks. I couldn’t hear our doorbell, whenever the doorbell went somebody was to signal me I could not sit freely with people as I could not follow conversation. Visitors on the door were to write down their names and whatever agenda they had. It was very embarrassing for me. I got nothing from the church services.
In short. After more than a year of assessments and explanations the operation was then done in November 2018. A Just over a month after later, the implant was switched on, and WOW!! It was like a dream. The audiologist asked me a question which I clearly understood and answered. Could hear even the clock ticking on the wall.
I am now 1 month back in the hearing world. I can hear a phone ring and can communicate through phone. I can listen to a tape. I can hear the door bell and talk freely with the visitors. I feel relaxed to site with people. I can hear the birds sing and many other things.
I am just too happy and very, very grateful to the Nottingham Auditory Implant Programme [Nottingham audiologists Cochlear Implant Team]. They have done a fantastic job on me. I want to thank them all for their exemplary patience. Continue to help others as you have done on me. My advice to those with hearing impairment and are scared. Go for it and your life will change drastically.
Lisa has been profoundly deaf from birth and uses BSL and sign supported English to communicate. She describes the difference the cochlear implant has made since receiving it 3 years ago.
Mary had a progressive hearing loss for more than 30 years and was referred to our programme at the age of 69. She had a profound bilateral hearing loss and was gaining very little benefit from her hearing aids. In the video she tells us about her experience before and after implantation and particularly about the effects on her relationships with her husband.
Mustafa works as a chef. He has been profoundly deaf since birth in his left ear and and his right ear has gradually become worse. His main language is Gujarati.
Penny has been diagnosed with Pendred's syndrome. Her hearing has suddenly deteriorated and she has recently received a second implant.
Cochlear implants after long term deafness
Patients who have experienced long-term deafness will benefit in different ways from those who have recently lost their hearing and from children who have cochlear implants early in their life.
We have produced some leaflets which record some of the experiences of adult cochlear implant patients who have been deaf for a long time:
- Early experiences of having a Cochlear Implant (simplified).pdf [pdf] 514KB
- Early experiences of having a Cochlear Implant (full).pdf [pdf] 551KB
Early experiences of long term deaf adults (full)
The video clips below show a range of different patient experiences but all had their cochlear implant after long-term deafness.
Afirah was born profoundly deaf and uses BSL. She did not get much help from hearing aids. She explains why she decided to have a cochlear implant and describes her experience over the 5 years since she was implanted.
Alwyne has had his cochlear implant for about a year but before that he wore hearing aids for most of his life. He and his friend Zoe talk about the sounds that he can hear now, that he could not hear with his hearing aids.
Ann-Marie has always had a hearing loss but experienced a drop in hearing in her early adult life. She has had her cochlear implant for 3½ years. She uses both spoken English and BSL and teaches BSL in a college. She describes talking to her family about making the decision to have a cochlear implant.