Jeremy's Story -

This article is unashamedly about cochlear implants and the immense change that they can make in one's life, as I have myself experienced.

Even if you have opted, by decision or by neglect, not to consider this path forward, I would urge you to read this contribution and think again. I recently saw an interview on TV about new advances in liver treatment for possible terminal conditions. The patient had doubts and said " What about the size of the scar?" He was seriously ill, could die, and he was bothered about a scar! For those of you like me, who are profoundly deaf, there is a treatment which can improve the quality of one's life and it seems wrong not to at least seriously examine the prospects and better still to pursue having a cochlear implant (CI). But you have to work at it, work at getting your hearing working again.
Your response to this challenge may be "Yes, it's a good idea but its expensive and my health authority won't do them or else it takes such long time to get one" or " I've read about them but I don't know how to choose one because I've heard all sorts of tales about having one". Fair comment but have you really tried to find out the answers to these problems. How should you go about finding out?

An excellent starting point is the latest edition of " Cochlear Implants, A Collection of Experiences of Users of All Ages" from the National Cochlear Implant Users Association (NCIUA) and also the recently revised publication "An Introduction to Cochlear Implants" from the National Association of Deafened People These are very comprehensive booklets which will very clearly set you on the right road to restoring your ability to hear and resume your life as you once knew it. It lists all the contact points and organizations that will help in this quest.
You should also identify for yourself what NHS area you are in. The NHS had another reorganization in Spring 2002 and its structure can be found here ( and then use their search facility). It lists all the new Primary Care Trusts( PCT's), which are now the sole arbiter of financial decisions on operations and health treatments. Go on to the web site of your own PCT to find their details and write to the Chief Executive and ask them what their policy is on CI funding and treatment. While you're at it, join the National Cochlear Implant Uses Association (NCIUA) and its branch groups and the Royal National Institute for the Deaf and Hard of Hearing people (RNID) and all the other "deaf" organizations. Don't wait to become an implantee. Act now and begin the process of learning all about them.

Second, contact the British Cochlear Implant Group at bcig.org.uk and identify your regional CI Centre, which are all hospital based. There are 21 of them throughout the UK where they, and they alone, perform CI operations. Identify the name of the principal surgeon at the relevant Centre and that of the CI coordinator. Ask your doctor/consultant for a referral to that surgeon. Don't be shy, push for it. Also, don't, at this stage, be put off by any dubious news about funding. This is the first real step in the whole possible treatment programme. The surgeon will make a preliminary examination of your condition and whether he intends to pursue your case. Only then does the process of official funding application begin. Two separate applications will be made. One for the assessment stage and another for the full operation, supply of the equipment and the after care treatment.
You by now should be able to tell him of your PCT and it's policy. Your PCT does not have to be in the same geographical area as your CI Centre. This is important because waiting times at CI Centres vary across the UK and if you wish, you can opt, subject to relevant agreement, to go to a CI Centre other than your local one.

In the meantime, you should have found out all you can about CI's, the equipment, the choices, the operation, and the outcomes. All of this can be found at bcig.org.uk. Write to the major Cochlear Implant equipment suppliers (there are 3) and get all their literature. Study it, draw up comparisons, and become aware of the differences between them.
All modern CI's are BTE's. i.e. they fit behind the ear (no need for straggling wires and body pouches- although they are available if you want them). They are light, have both disposable and/or rechargeable batteries and a variety of controls for one's own adjustment. Visit their websites, join CI forums and chat rooms on the Web such as yahoo and others. An excellent email forum is liserve@yorku.ca .Another really good website is Cochlear implant Central which has a wealth of information and numerous contacts.

The hospital assessment process can take up to 3 months in total. Then the funding waiting decision, which can vary from 3 months up to 2 yrs, unfortunately. When successful, a further 2/3 months to the operation itself, during which time you will have further sessions to explain what is going to happen. After the operation, which takes about 3 hours, you will be sent home within 24/36 hours and most likely will be able to resume normal life within about 3 days. In fact I traveled to Spain for a holiday within 2 weeks of the operation. It was 3 weeks before they allowed me to wash my hair by which time the wound soreness had abated. After 10 days the stitches were removed and for a further week I had antibiotics (beyond those issued to me as I left the hospital) for a very mild skin infection. Then 4 to 6 weeks after the op you are "switched on " and life begins anew.

Was it all worth it? Absolutely yes, without question. Where strictly relevant, I cannot recommend having a CI too highly. For those who can manage a tolerable life with hearing aids, never forget that natural hearing, albeit diminished, is better than a CI and should not be lightly exchanged. But for the majority of us who begin from a base line of nothing, then a modern CI is truly a miracle and a blessing. I have been very lucky, relatively speaking.
I was 67 yrs old, (retired and not having to earn a living) with a history of progressive hearing loss. My right ear had a mastoidectomy 25 yrs ago and has been effectively deaf for over 5 yrs. My left ear was clinically OK though with a degree of High Frequency loss in recent years. On 6 Nov 2000, I woke up deaf in both. I had suffered Sudden Sensorineural Hearing Loss (SSNHL) caused by a "virus". I embarked on the CI route only to be declared " too good" (because of the strict criteria the NHS impose) and after a series of hearing aids in my left ear, adjusted to a digital one with very low-grade results. I only managed at all because of lip reading, which unknown to me, I had been doing for some years. I was then given full lip reading training within my hearing therapy treatment at my local audiological unit in Windsor where I received excellent treatment and support. On 28 Aug 2001, I suffered another "attack" and became profoundly deaf in both ears. I again started up the CI road, was assessed, successfully, in spring of this year, operated on 17 Oct and switched on 21 Nov. Though I live in Berkshire I was fortunate to go to the Oxford CI Centre where again I received excellent treatment and support. The NHS is often maligned but in specialist areas such as CI's, it excels.

My CI worked straight away (the failure rate is less than 1%). I have had 5 "tuning" (maps as they are known) sessions in my first 4 weeks and every visit is a continuous improvement. To begin with, everything sounded very thin and tinny. But successive tuning has begun to fill out the sounds and they are becoming more natural (as I remember them that is). From the outset I could hear the audiologist. In 2 weeks I was on open set recognition speech tests and had tried the phone with known people. In 4 weeks, I can converse naturally indoors, have begun listening to the radio (early days, spoken words only, music is still a jumbled noise) and have a complete set of environmental sound recognition. I have begun watching TV news etc (where people face forward) without the sub titles.
I'm given training exercises every week to do at home. I have been using audio books with matching books (must be complete, unabridged and undramatised versions), which is both enjoyable and very helpful. Outside the house, things are still very difficult but better week-by-week. I've a long way to go in my training & relearning programme but I feel confident that I'm going to get there.

Each & every one of us is different and none of our experiences will be replicated anywhere else. All 3 of the major CI systems are great. (I feel it inappropriate to give my choice) It is solely a personal choice for each of us to make (subject to medical direction because of one's condition perhaps) and for future patients, do not let others bully you into a choice. It's a lifetime decision so make it yourself.
So my advice to potential & future patients do, do, do, lots of research. Find out everything you can. Don't short cut this vital phase. Network all over the place. Use the Web ad lib. Ceaselessly question (politely) your doctors, consultants and surgeons. If you don't get sensible answers, push for them and if they are not forthcoming, then move on. Quite simply, the more you know and understand, the better you will feel. Prepare yourself fully. Get all the domestic & communication aids/alerts/equipment sorted now. Don't wait for the future. Bring it closer to you now. Work for your Hearing.