My first cochlear implant

I have been hard of hearing since I had chickenpox at the age of three. My hearing decreased over the years until I had only 1% hearing left in 1994. Despite my being able to lipread extremely well, the years between 1994 and July 1998 were 4 years of depression and isolation.

Although I had heard about Cochlear implants before, it has never occurred to me that it could work for me…..especially as I had visited an ENT early in 1997 and he did not even mention the possibility at all. I started surfing on the internet during the second half of 1997 and a new world opened to me. Here I met dozens of people who had implants or were in the process of getting one.

One day, when my good friend Maddie from Canada, told me that she was getting a Cochlear Implant (CI), I suddenly realised that a CI was something that was a reality....that is was something that was bringing other deaf people back to the hearing world. And it made me wonder if I too could also benefit from this wonderful development. After gaining a lot of information and talking to a lot of CI recipients, I made an appointment to see Prof. Swart, an ENT who implants CI's in Pretoria .

On the 25th of March 1998 I underwent all the tests and was announced an ideal candidate!

This was the first step in my journey to the hearing world. Many people told me that this was to be the most wonderful journey of my life. How right they were! It was the beginning of a whole new life! A cochlear implant system consists of:

  1. The implanted part which consists of an array of 22 electrodes that is placed in the cochlea, a receiver and a magnet.
  2. The microphone which fits behind the ear and receives the sounds.
  3. The speech processor which selects and codes the sounds.
  4. The transmitter, which sends the codes to the receiver, which converts the codes into electronic signals and sends them to the electrodes in the cochlea.

From there the impulses are sent to the brain. The transmitter also has a magnet and is held in place by the magnet in the implanted part.

In June 1998 a behind the ear system became available in South Africa for the first time. This left me to make a difficult decision. Should I take the Sprint, which has a box speechprocessor with four programs or the ESPrit, the behind the ear model but with only two programs.

After doing some research and talking to quite a few people with experience with the ESPrit, I had to make my choice when it was confirmed during the first week of May that the operation would be done on the 7th of July .

As everybody with the ESPrit that I spoke to were very positive and happy with it, and also because it is a much more convenient system to wear, I decided to go for the ESPrit. I reasoned that at least I will not know what I would be missing by not using the Sprint. The only problem that had to be solved at this stage, was to generate enough funds for the CI.

The total costs would have been R120 000 of which the medical insurance would pay only R14 000. But by staying positive and by working really hard on several fundraising projects, and through the generosity of many wonderful friends and family who made donations, we overcame this obstacle.

 



So, on 6 July 1998 we left for Pretoria, where the operation was to be done.On arrival the admission and all the neccessary examinations by Prof. Swart, the ENT surgeon and the anaesthetist by were done quickly. The required blood tests, X-rays and ECG had already been done the previous week, so that saved a lot of time.

The next day, 7 July, the implant operation was done and I was in the theatre for 5 hours. When I woke up for the first time, my hubby was there... smiling...... and I immediately drifted off again... For the rest of the day I was awake every now and then for a few minutes... and then asleep again. I had no pain but was feeling very nauseous. I was cold and trembling .

8 July: I felt much better than the previous day. Prof. Swart came and showed me the X-rays of the implant and told me that the electrodes went in nicely and that he was very satisfied with everything. He put on a new bandage and said that the incision also looked very good. It was about 7 cm. long and stretched from the top of my ear straight upwards. I was surprised....I thought it would be behind my ear. The stitches could be removed locally in a week's time. And in a month I could come back for my hookup!

I slept all the way home. I still felt a bit dizzy, but did not experience any pain at all. But I looked a sorry sight! My head was bandaged with tufts of hair sticking out, my face was swollen and my eye was swollen and turning black! Sheeeez!

Me, a few hours after surgery, looking... not too hot.*L*


On 14 July the stitches were removed and I had my hair cut nice and short to have it symmetrical again. I felt and looked much better than a week ago! I was feeling very happy and thankful. I knew that this CI was the answer to many years' prayers. God was making a miracle happen in my life. I still had to wait another 3 weeks 'till the 28th of July for the external parts to be put on and for the system to be switched on (the hookup). That would be the big day when I would be able to hear sounds again for the first time in many years!

 



We left very early for Pretoria on Monday 27th July. My hookup appointment was scheduled for 10am.During the whole weekend I was tense and nervous and excited and happy and worried....all rolled in one. Now at last the wait was almost over! 

When we arrived at the university, everybody were waiting and calm and friendly, so soon I relaxed and my audie started by showing me my new behind-the-ear CI. I really was surprised at how small it is...almost the same as a hearing aid and as light as a feather. Then I was fixed with the SPrint, the box processor, as the programming has to be done with it. The processor was connected to the computer with a cable. Firstly she said that she was going to send sounds through all 22 electrodes to check whether they were all working. When she asked: do you hear it? and I heard nothing, I felt a sudden rush of panic! But then suddenly I heard the beeps! They were all there! (Huge sigh of relief!) 

Then she started to set the volume levels for threshold....the softest volume I could perceive... for each one of the 22 electrodes. This I found very tiring as one must concentrate very hard. Most of the times I was not sure whether it was sounds I heard or my tinnitus blaring away! But at last that was done and she started to set the comfort levels (the most comfortable volume I could tolerate). That done, she ran through all 22 electrodes to determine whether they were all at about the same intensity level. We had to change a few and then...she said she was going to turn them all on at once...the actual turn on! Hubby grabbed the camera to take a pic of the great moment! 

What excitement! My audie started to talk and it sounded just like a lot of crickets! High whistling and crackling sounds....but I could hear what she was saying! And then Peet said something...and he also sounded like a cricket! Then I spoke...oh my goodness, I couldn't believe that it was me making those awful noises! Everybody was smiling and talking and asking if I could hear them! The whistling sounds are the 's' sound which I have never heard before. What a noisy world! 

Then we all went to have tea together and I also met another man who received his CI 4 years ago. He had come to have a map done. It was very reassuring to be able to speak to him. He says he uses his cellphone with no problem at all, though he cannot listen to music. :-{

After this, Peet and I left and we decided to go to the zoo for the rest of the day. When we came outside, the sound of traffic was overwhelming. I could hear a motorcycle passing. Our car's indicators were quite loud. At the zoo we walked and I listened to all the different sounds....birds, animals, water running, the water sprinkler making tj.tj.tj.tj.tj.krrrrrrrrr!  Peet's voice was becoming less high pitched by then. He was beginning to sound more like a frog than a cricket! His cellphone rang and for the first time I could hear it. If I looked at him I could understand everything he said, but I could not discriminate words yet without lipreading. 

In the evening we visited friends. I helped Petra to prepare a salad and when I cut the lettuce it sounded like it screamed! I heard the kettle whistling and the cuckoo clock against the wall ticking. I got quite a fright when that little bird started cuckooing above my head! Although I could follow all that was being said, I could not discriminate between men and women's voices. They all sounded high pitched and static. 

The next day, Tuesday, I went back for another map. This map was much better than the first one. Now I could discriminate between men and women's voices. My audie made two maps and put them on program one and two (the two settings on the BTE) so that I could try out both and see which one works best for me. 

From the audie, Peet and I went to a big shopping mall. First we went to a restaurant to eat something. This was a very noisy experience....lots of voices, cutlery on the plates, a perculator bubbling in the background....I had to ask Peet everytime what it was that I was hearing! Then we went to see a movie...'The man with the Iron Mask'. I could follow about 30% of what was being said...a huge improvement! It was really great!

On Friday we returned for the last mapping before returning home. This one was still better than the previous ones. Again my audie made two maps for programs one and two. The next map will be in a month's time. On our way home Peet started to 'train' me to listen without lipreading. He would say words and sentences and then I must tell him what he said. It got better the longer we did it. I would have to practice quite a lot in the coming weeks.

Back at home, the first thing I heard was my dogs barking and panting! (What a racket!!) Then I heard my daughter and my father's voices. And the telephone ringing. And what a noisy thing a computer is!! But it was a wonderful experience! A miracle! Although everything still sounded very unnatural, high pitched and tinny, it did not matter because I could hear. And I knew that it would get better every day!

 




11th August 1998

It is now 17 days since my hookup, and I am still enjoying this noisy world. I am constantly asking whoever happens to be near: What is that? and What makes that sound? and Did you HEAR that!?!?! The other day I quite forgot myself and while our pastor was talking to our bible study group, I told him: Shhhh! Listen!!! I felt quite embarrassed when I realised what I did!! Luckily everybody laughed and were happy for me.

I have the Nucleus 24 behind the ear model (ESPrit). It's marvelous! It's easier to put on than an hearing aid. It takes me less than a minute. It has a little switch for off, program 1 and program 2. It also has a little 'wheel' that you can turn to adjust the sensitivity/volume. It has an automatic volume control. When I enter a very noisy place like a shopping mall or so, the volume goes down. The only problem with this is that the voices also get softer, but I haven't yet not been able to hear/understand people, so it hasn't bothered me yet. 

I am very satisfied with the battery life. The BTE uses two 675 activair batteries and they last 5-6 days. When the batteries are finished, they die suddenly, but when I switch them off and on again, they will last another 10-15 minutes before dying again, giving me enough time to replace them. This can be repeated a few times before they are really as dead as a dodo. 

The quality of the sounds I hear varies. Voices still sound mechanical and static, although not as high pitched anymore. I can clearly discriminate between men's and women's voices and I can understand voices very well. I still rely on lipreading, but find that I can now and then hear words and short sentences without looking. It is definitely improving. The other day I listened to my son's voice on my hubby's cellphone. It was loud and clear although I could still not discriminate individual words. But I am quite confident that I will be able to speak on the phone sometime in the future. 

Music still sounds awful. I bought myself a portable CD and tapeplayer and when I have time I listen to music CD's and story tapes. I think music will improve with a better map....at least I hope it will! 
Every place I go is a new experience. I found out that the study, where Peet and I each have our own computer and where we all watch TV and relax, is a VERY noisy place! The computer goes click, click, click, ping, poing, poop poop! Peet's chair needs lubrication URGENTLY! It screetches everytime he moves! The parrot talks and screetches constantly and in the background are the sounds from the TV. The telephones ring every now and then and I love to watch Peet when he talks on the phone, because now, for the first time I can understand what he says! My dogs are so noisy...I hear them pant when they get excited and their barking is quite a racket! 

Yesterday I went to Pick and Pay to buy groceries. Now THAT is a noisy store with the constant ringing of cash registers, the sound of heels on the floor , trollies that squeek as you push them and voices everywhere. 

Outside I can hear the birds , dogs barking and cars and motorcycles passing in the street. The other day I was standing outside listening to the different bird sounds going peep, peep, peep and pe-pe-pe-peeep! pe-pe-pe-peeep!, when I suddenly heard one that went halloo! halloo! I was fascinated! Just as it went halloo! again, my Dad touched my shoulder and said halloo once more!! We had a good laugh! Life is smiling at me once more!

25th August 1999

Today something amazing happened. The phone rang, and there was nobody nearby to answer it. So I nervously decided to give it try. And I clearly heard my daughter's friend say: Hello mrs. Adendorff. Can I please speak to Anita? I were stunned! Could this be happening to me? Yes! It could and it was! Another step on this amazing journey to the hearing world!

27th January 1999

Today it is exactly 6 months since my CI had been switched on. It was six months of living in a whole new wonderful world. I would often just stand still and turn my head in all directions....listening to all the environmental sounds....the birds singing, the leaves rustling in the wind, the rain pattering on the roof. I started playing bowls a few months ago and it is just wonderful to listen to all the sounds: the balls bumping against each other, people calling out, the sound of my footsteps on the grass.....

My recent holiday in Cape Town was one of the greatest experiences I've had in a very long time. All my kids were together with their friends/wife/fiancee and I could hear most of what everybody was saying. I could just sit silently for hours and listen to their voices.

I find that many of the environmental sounds I had heard in the beginning was now fading away in the background and that I was hearing the more important sounds clearer now. I am speaking on the phone more often and I find that a cellular phone is much clearer and easier to use than the ordinary phone. Music is getting better, but is still not as it should sound. I have been encouraged a lot by a friend who told me that it took her 9months before music became beautiful to her, Sounds with a CI is known to still improve even after years of using it. A strange thing that I experience with my CI however, is that I have no sense of the direction from where sounds come. I would clearly hear someone calling my name, but I would have no idea from what direction it comes. 

It is difficult to describe the emotions that one experiences when you can hear again after so many years of silence. The biggest emotion, however, is overwhelming thankfulness towards God who has heard and answered many years' prayers and had given me a whole new life.

27th July 1999

Today I celebrated the first year of being able to hear again! It was 365 incredible days of wonderful experiences and pure happiness! I have been leading a normal life once more, I can hear and understand people, I can communicate on the phone....and.....at last....I can enjoy music again!

In March I received a variety of accessories from Cochlear that can be used with the ESPrit. One can remove the battery cover from the processor and replace it with the audio cover which is only a little bit bigger than the battery cover, and where you can plug in the accessory you want to use. There is a lapel microphone, a TV/Hi-Fi cable, a telecoil and a personal audio cable which can be used in various circumstances. The only one that I use, is the audio cable that connects my CD player to my processor. This brought such an improvement to the quality of music that I am founding it a pleasure to listen to music again after battling so long with awful distorted sounds! Another little miracle!

On the 5th of July I celebrated my 51st birthday and me and Peet's 30th wedding anniversary. Lot's of family and friends phoned from all over and it was the first time that I could hear each and everyone of them! Many people couldn't believe that it was actually me that they were talking to! It was quite an emotional experience and a lot of tears flowed!

This year (1999) I've had two maps...in March and July...and each time it made a difference. Sounds just keep improving.

I don't think I will ever be able to stop talking about the miracle a cochlear implant is!

27th January 2000

Today it has been 18 months since my hookup. It has been 18 months of pure joy! I never think of myself as a deaf person anymore, although I do get reminded of that sometimes. My CI's batteries can go flat at the most awkward times, leaving me with the certain knowledge that I'm still as deaf as I used to be! But Cochlear's ESPrit has the very useful feature that it gives a series of beeps when the batteries are almost flat. This leaves one with enough time to replace the batteries in time. Thing is...I must learn to pay heed to the warning! 

Sounds are, surprisingly, still improving. Music have improved quite a lot over the past 6 months and I am slowly building up my own CD collection....something I never thought would be possible! Most background noises are automatically ignored by my brain, which makes conversation in a noisy environment much easier. Going to the movies and socialising with friends are some of the great pleasures in my life that I can now once more enjoy.