Last monday it was finally my turn to get my two Cochlear Implant (CI) processors and thereby receive sound again. In this post I will tell about my experiences from getting connected and the remaining of the first day with sound.
The day I got connected
I had been looking forward to this day for a long time. The day before getting connected and on this moring I could not avoid thinking about reasons they might explain for why I could not be connected this day. I of course knew that this was nonsense but it made it difficult to fall asleep and I woke up being nervous and having pain in the stomach because of this.
When we got to the audiology department at the hospital we had to wait about 20 minutes more than the meeting time I had received. This period felt like an eternity in a very crowded waiting room. I was however very calm and I did not feel nervous – I was just looking very much forwards to getting started.
When it was my turn we should initially start with hooking up my two CI’s. Luckily we did not first have to talk a doctor or something like that which would just postpone the most important thing on my schedule. We had to be 5 people in a very small office. The five people was:
- The technician that should set up my CI-processors
- The person who would be in charge of my rehabilitation
- A secretary which would be a writing interpreter for me – it would have been very difficult without this support
- My mom
After a short introduction I was asked about how the process since my surgery had been, I mentioned that I have fought with Tinnitus all the way since the surgery. But I had been able to use a hearing aid on my right ear since Easter and this had almost removed the tinnitus on that ear. I therefore expected that the same thing would happen on the other ear when I got the CI-sound. I was told that it was very likely that my tinnitus would go away over time, but that it could take some time before that would happen. Especially in the beginning I should expect that I would notice the tinnitus when taking off the CI-processors.
Connecting the first CI-processor
We then started to connect the CI processors. We started with my left ear so that I could keep my hearing aid on my right ear while connecting the first processor.
The first step in configuring the processor was to find out how much power to use on the individual electrodes. I was told that I should tell them as soon as I could sense something. I asked if this would be like the tones played in a traditional hearing test. I was told that they could not tell me that – I should just tell them if I sense anything.
Suddenly it was there – I could clearly hear a tone which was in the upper midrange. I told this and then my technician laughed a little and told me that it was actually a low frequency sound. When looking back on this experience I felt that the tone I heard was like one of the high tones on a flute.
We then had to find out how much volume we could add to this tone without me feeling that it would be too much. It took a little while to find the level where I felt we would get close to the limit. We then repeated this procedure for a range of other tones which was gradually having higher frequencies.
After having been through all these tones we had to ensure that all the different tones had an equal volume. To do this I would hear five different tones played right after each other and then I should tell how they should be adjusted in comparison to each other. When they were adjusted there would be played 5 other tones that should be adjusted and so on. In this test there was many more tones than in the previous test. One thing that did confuse me a little during this process was that the “space” between the frequencies was varying. I was told that this is caused by the fact that the implant has most electrodes that stimulate speech and that the way in which my electrodes was placed in the cochlear could get this to happen.
It was finally time to put audio on my first CI processor and I therefore took off my hearing aid on the other ear. The volume was slowly turned up and I was told that I should tell as soon as I experienced audio. It took some time and I just looked around in the room while waiting curiously to find out how it might sound. While the volume was turned up the technician frequently asked if I could hear something.
Suddenly I heard something and told them that – but in doing so I was quite surprissed that whenever I said something I heard a tone from a flute. It really did not make sense and it was a very strange feeling. We continued to add volume until we reached the level that I felt was tolerable. I defined that level only by how much volume I could tolerate on my own “flute voice”. I told them that I experienced my voice as having considerable much more volume than the technician. She explained that this is caused by the fact that CI does not reduce the volume of ones own voice in the same way as a hearing aid and that there would therefore be a huge difference in the volume of my own voice and another person.
I was multiple times asked to consider how the voice of the technician sounded and if I could hear what she said. I told them that I could easily hear the noise of the keyboard that the writing interpreter was hammering and that this actually made it difficult for me to focus on speech. The writing interpreter therefore took a small break so I could consider the voices. I felt that the voice of the technician was very weak but if it should be louder then the volume on my own voice would also be turned up and I did not want that – I really felt that it was close to the limit on how loud a sound could be to me. But apart from this I could hear here voice but just not understand it. But I felt that speech voices changed quite quickly – I noticed that they were not just and endless stream of beep-sounds – they were complex voices that resembled speech with something much more efficient than helium.
Connecting the second CI-processor
When it was time to connect the second processor I kept the first one on. The procedure was the same as with the first processor but it went a little faster.
When the audio was added we adjusted the volume so that it would be on level with my other ear. But I did however experience that there were some sounds that I could on one ear but not the other ear and the other way around. In principle I experience that it was very different if I hear a sound on one ear or the other – this was very confusing.
During the whole process I had to consider the voice of speech but it was very difficult because in this situation I did not know how to describe the sound I heard. At one time I was going to hear the voice of my mother and this was very strange because I found difficult to hear and what I could hear sound like she had gotten something more efficient than helium.
I did however feel that some sounds started to sound correctly like for instance the noise you hear when rattling with keys or clapping hands – I only noticed small differences in frequencies with these sounds and that they had gotten much more volume than what I was used to.
When we were done with configuring the two CI-processors we had to out and wait at the corridor. We had to talk with an ENT and an audiologist.
Here I once again noticed that it was the high frequency sounds that were sounding most correctly to me. It was for instance the sound it says when crunching some paper, people walking in the corridor doors that were opened and closed, the noise from the toilet and water in the sink. This noises had become a little more high frequency and had gotten much more volume.
I was beginning to be able to have a conversation with my mother by using lip reading – it was not easy but it was a huge relief to be able to have a conversation.
The technician that had connected my two processors came a couple of times and asked how it went. At some time she told us that the reason we had to wait for so long was, that we had been too quick at connecting the processors. I instantly wondered why we did not use more of the allotted time as I was sure we could do some more adjustments. I would have loved to make more adjustments to the individual frequencies one more time. I also thought it would be nice to do this volume comparison on each frequency compared between both of my ears – I guess this could have made the sound appear more equal on both ears. I had started to feel that I could hear all the frequencies on both of my ears but they had very different volume and this confused my ability to hear more than necessary.
At some point the technician came with the two boxes that belonged to my two CI processors. It was 2 blue boxes at the size of a suitcase. It seemed a little stupid to get that much luggage. But the reason is, that it is very few people that get 2 processors at once, and therefore the producer Advanced Bionics have not made a box specifically for users that receive 2 processors at one time.
We were supposed to go to the doctor first but in order to reduce our waiting time we were asked to come to the audiologist before time. Here we would do a walkthrough of the equipment that was in the two boxes.
We first had a talk about the waterproof Neptune processor that I should also have one of. She told me that they suggested that I waited with this as I would have enough to focus on with my two Harmony processors that I was wearing. I could get the Neptune processor today if I wanted but I decided to wait as I agreed that it was better to wait. I also didn’t having any specific plans for swimming in the cold weather we have in April.
A couple of times while I was at the audiologist but also when we was waiting I noticed that I easily could the coil away by accident thus removing the sound. The reason for this was the length of the wire that goes between the processor and the could – it was too long. I therefore asked if I could get one that had a shorter wire. She told me that I had received one with a standard length which also could be used for patients that needed a long wire. They therefore often experience that the wire is too long. She would check if she could get a shorter one for me. I did however wonder why they did not just make sure to have these wires in different lengths in their stock since it was apparently an issue they experienced frequently.
During the conversation with the audiologist I noticed a repeating sound that I could not figure out what was. I asked and was told that someone was using a drill in an adjacent room and they were impressed that I had noticed this.
After this conversation we had to talk to a secretary to find a time for the next adjustment of my processors. I got an appointment on may 17 but I have afterwards gotten this time changed to may 7.
The ENT initially checked the scars and looked in my ears. We then had a conversation about how the process had been since the surgery. She also asked me about the symptoms I have had.
I was told that anything was fine and I was free to go home.
After the audiology department
When we was done my mom and I huried down to the center of the city to get some food. It had taken more time than we had expected. My appointment was at 10.40 AM and we was done at about 3.00 PM
We bought a sandwich and walked to a nearby park where there was not too much noise. I did however feel that I got a lot sound impressions. I for instance noticed that the sound of eating my sandwich had become very loud. I also noticed the a weak sound from some seagulls.
Communication with my mother went fine as long as I could lip read. But I clearly started to feel that I was getting tired. It did not take long before I had to go home. My mother had to go with a train in the other direction as she had to work on the next day.
The trip home went fine but I was overwhelmed by the noise in the train. But I managed to cope with it even though I could not focus on other things than the fact that it was very noisy and that I wanted to go home and relax on my couch. Trains and cars sounded wierd on this day. It was like listening to a high frequency flute that was vibrating between two notes.
When I got home I took off my processors in order to take a better look at them. I was in doubt about the program selector – it was positioned in the middle so what was program 1, 2 and 3? (I had been given 3 program that gradually had higher volume so that I could go up in levels as soon as I was ready) I looked in the manual and found the answer, but this meant that I was on program 2. I thought this was a little to early that the technician had put the processors on this program. But I thought that there was probably a good reason for this so I decided just to put the processors on… – holy shit – I got so surprised that I had to duck because this program had a very high volume. I instantaneously took the devices of and put them on the first program.
I knew that good training could be audio books and that in the beginning it had to be easy books. I found an app on my phone that contained a free pixi-book for children which also could be listened to as an audiobook. I tried with the built in speaker of my phone and it actually went fine because I could easilly follow the text and hear some of the words.
When I had to make my dinner I decided to take a sound break. I was told that it was ok to take breaks of 30 minutes when I got tired. I was pretty tired of sounds when I had to make the dinner so it was a good time to do it as there would be a lot of noise in the kitchen while making the food. It was nice to get this break.
After the dinner I watched the news with subtitles – it was only the newsreader that I could understand a little. All other speech was incomprehensible so I had to rely on the subtitles.
For fun I decided to call my voice mail even though I knew that it was highly unlikely that I could talk on phone already. But to my surprise I was able to understand some of it. But ok – I already knew what it was going to say.
After that I decided to watch an old danish movie with subtitles. These old movies have the advantage that speech is very clear. I was able to understand a lot as long as I had the subtitles. I could hear some of the music but I clearly felt that a lot details was missing in the audio. I almost only heard speach – all other background noises was gone.
After the movie I went to bed but it was difficult to fall asleep after such an eventful day. I also looked forward to the following day where I was going to my first rehabilitation session.