CI experiences

Dear Friends,
I hope you will allow this rather long post in which I have attempted to relate my own experiences here in the UK, in the hope that it may be of value to all future CI patients. I have tried to cover all the typical topics that one reads in this forum. My thanks again to all of you who responded to my own enquiries in the early days.

Background:
I am 67 yrs old, with a history of progressive hearing loss. My right ear had a mastoidectomy 25 yrs ago and has been severely 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. After MRI scans, X rays and 8 blood tests, my consultant said it was caused by a virus. I had suffered Sudden Sensorineural Hearing Loss (SSNHL). I embarked on the CI route only to be declared " too good" (see Finance below) 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 lip reading training within my hearing therapy treatment. On 28 Aug 2001, I suffered another "attack" and became profoundly deaf in both ears. Repeat of previous tests with same result. I again started up the CI road, was assessed, successfully, in Spring of this year, operated on 17 Oct and switched on (hook up) on 21 Nov.

CI Choice:
Having begun some basis research and identified the 3 prime manufactures of CI's, I got all their literature and compared it. I joined several "deaf" organisations and attended seminars on CI & related issues. I joined this forum and looked up all Alex's contact sources . Though initially drawn to the Nucleus system, I progressively focussed on Clarion. I made contact with their UK office and was fortunate to be given a complete expose by their senior clinical technician/audiologist on the C2 BTE. I was allowed to choose Clarion by my CI center (see Finance) and everything was set when the meningitis crisis broke in late summer. The Hi Focus electrode with positioner was not withdrawn on the UK market because the original approval had not been based on the positioner alone. I engaged in more research and accepted leading UK medical recommendations that a C2 implant without the positioner would not be a retrograde step. The underlying decision for Clarion throughout was based on their very high investment in R & D activity and that their system was capable of continual upgrade as C2 technology moved forward. (see below)

C2BTE system:
I urged the UK office to get me the new HiRes programme strategy with the T mic from the onset and was very lucky to be one of the first UK patients to have it them both just after their release in the UK. The HiRes is not an "add-on" to the previous standard of C2 CIS/SAS/MPS. To quote Clarion, "HiRes is made up of pulses (like CIS, but presented at a much faster rate). Due to the fast update rate, HiRes is able to preserve the fine temporal structure of the sound waveform. The very fast rates also produce stochastic firing of the hearing nerve, which is the natural firing pattern of the auditory nerve." The edition just on release in the UK is not a fully developed version. The full edition, which is entering user trials here in the UK , will be called SoundWave and will have the extended low frequencies, sensitivity settings,multi variable T Mic/Ear Mic settings, more audiologist parameter settings et al ! I can't wait but am so reassured that my BTE will be upgraded again in the new future.

Finance:
Here in the UK, medical care is free at the point of delivery by the taxpaid NHS. But the scale of CI activity is relatively low compared with the rest of the world. For a population of circa 60 million , there are 21 CI centers, which have performed perhaps 4000 operations to date. Policy on this expensive treatment (circa $30000 - $50000 - in total for assessment, operation, implant, audiology tuning , hearing therapy and after care) varies geographically. Each potential patient's funding has to be secured by their CI center on an individual basis. The criteria for potential funding is very strict and exacting.Some areas do not fund CI's at all, some only fund children's applications whereas the rest , whilst potentially funding all their applicants, have to ration their budget and there is a long queue. It took me 10 months from first being seen to my operation ; 18 months to 2 yrs is not uncommon. However, I have been fortunate to get the very best of attention, therapy, medical skills and audiology support. The NHS is often maligned but in specialist areas it excels.

Operation:
Two months prior to the op , the surgeon arranged for me to have a anti meningitis injection of Pneumovax II, a 23 strain pneumococcal polysaccharide. No side effects. The operation was very straigh forward. I had no apprehension, having been operated on 3 times in the history of my right ear. I spent one night in hospital "settling down" , was operated on at 9am, woke up circa 5pm,spent a restless night and then went home the next morning. I had no nausea beyond a brief spell in the night, was up & walking about and getting dressed etc within 24 hrs. I was a bit listless for perhaps 3 days by which time I wanted to start exercising and getting on with things.In fact I travelled to Spain for a holiday within 2 weeks of the op. 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.

Side Effects:
Immediate ones were a twitching of my left eyebrow for 3 days, a metallic cum soapy taste which lasted about 2 months and, unfortunately,a sharp increase in tinnitus on my left side( typically, one's tinnitus is reduced). This has slowly diminished though never to its pre op levels ; plus of course, I have adjusted to it over the months.

Results:
It works !!! The T & M settings are experienced by a full stream of intermittent bleeps so it is easy to respond and help get the levels right each time. I have had 5 tuning sessions in my first 4 weeks and every visit is a continuous improvement. To begin with, everything sounded very thin and tinny. But re mapping 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 Audie and walked through the hearing therapy session on closed set sentences. By 2 weeks I was on open set recognition and had tried the phone with known people. At week 4 stage ,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 (captions). 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 but I feel confident that I'm going to get there. Battery life begun at 6 hrs for the Std size but has gone down to 4 1/2 hrs as the system has been "opened up" (my internal dynamic range has expanding week on week). I get 10 hrs on the Extended size battery. So one of each gets me through most of a waking day.

Conclusions:
I have been very lucky, in relative terms, in that I was retired (no need to earn a living) , have had excellent support, and a good result. Where strictly relevant, I cannot recommend having a CI too highly. For those who can manage a tolerable life with hearings 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 abase line of nothing, then a modern CI is truly a miracle and a blessing. 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. 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. In this respect, I'm saddened at the " CI rage" that goes on in this forum. Let us all help each other with information, encouragement and support.

Recommendations:
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.