Thursday, November 3rd, 2016 it was finally my turn to receive my two Cochlear Implant (CI) processors and thus get sound. In this post I will talk about my experiences with the connection and adjustment of CI processors and the first sound experiences of the day.

Prior to that, a month has gone since the surgery on October 6th, where I was practically completely deaf. As described in an earlier blog post, I was and still isn’t totally deaf after surgery, but the sound is so weak that it practically does not pay to use the old hearing aid. However, it has gone relatively easy to cope with everyday life by lip reading alone.

But as I said, the interesting part now has come – to get sound with the new CI-processors! My parents and I therefore came into the hearing clinic at Odense University Hospital in Odense, where there were three things on the program, in following order:

• CI connection and adjustment.
• Follow-up on surgery with a doctor.
• Talk with a hearing therapist about the new equipment.

Connecting the first CI-processor:

When after short waiting time it was my turn, we went into the hearing clinic’s sound adjustment room. Present were myself, my parents and the audiologist to set up my CI processors. Some people also include a writing interpreter, as support. But since I’m so good at lip reading, this person was omitted. We then began the physical installation of CI processors. So audiologist mounted processors on the ears and the coil with magnet – i.e. the gizmo thing placed on the head.

However, there was a problem with the magnets that had difficulty with getting stuck on the head. The reason for this was partly my long and thick hair was in the way, but also that the magnets were too weak. With a hair trimmer, we removed the hair where the coil / magnet must sit – an area the size of a Danish 5 kroner coin. But still the magnets had difficulties with getting stuck to the scalp. I asked if I could get some more powerful magnets.

The magnets are mounted quite simple, by being screwed into the coil centre. So the audiologist found some other, slightly stronger magnets and mounted in place. It alleviated the problem somewhat, but still I think it fell off too easily. The audiologist did not have more powerful magnets in stock, but promised to get them before next time I come there. Anyway, the strength is a balance of the magnet must sit stuck to the head, but not so stuck that you can get pressure sores on the head due to the constant pressure to the skin.

The hearing aid part hangs loose on the ear and is also lost quite easily, I think. So the earplugs made in advance, are also necessary. We were however agreed that I had to adjust them when I got home. It is the length of the hose that connects the ear plug and the processor to be precise, for the processor to sit comfortably and without interfering with the ear. However, by default I think it was a little dawdled solution that required me to keep the head absolute calm, in order not to lose the equipment.

With this done, we now tuned the equipment:

From my own desire, we started out with my right ear, which so far has been 100% deaf. I chose it that way because I was excited to get the sound on this ear. But also because what I expected to be able to hear with the right ear had to be significantly poorer than with the left ear, since it has not been used before. In this way I couldn’t be disappointed when connecting the processor number 2 as the sound expectedly had to be better when the left ear was connected.

The first step in setting up the processor was that we had to find out how much power the individual electrodes should have. The audiologist turned up gradually the strength to find out how high we could turn up this electrode without it was unbearable for me. I should tell when I began to sense something. I thought it would be tones, not unlike to traditional hearing tests. But the audiologist told that it was just current pulses, therefore I should just tell how I experienced the strength of these.

It did not take long time until I could feel something in the right ear. Later, when the power was turned up more, it was almost a kind of “plop” sounds. Or no, I would not call it sounds because it sounded pretty weird, and not how I’m used to sound in the left ear. I also felt clearly that there was something new and unfamiliar into the right side of the head – it felt sometimes as some kind of electric tics into the right side of the head, in the area of ​​cheek and right eye.

When we had run through all these electrode strengths, we should ensure that the different tones had the same level. This was done the way that I would hear five different tones in succession, and then I should tell how they should be adjusted in relation to each other. The adjustment was repeated until I experienced that the five tones had the same level. When they were aligned, there would be five new tones with a different frequency, which I had to do the same with. This procedure was repeated a number of times – I did not count, so can not tell how many times it was.

Now it was time to turn on “real” sound on my first CI processor. I could immediately hear a lot of sound, but the sound did not differ significantly from what I had heard during the setup of the processor. The difference was that the strange noises now followed our voices in intensity. I could not immediately hear something that sounded like normal sounds or voices, but could hear the change in sound when I or the others in the room spoke, or if we made sounds. But it was fun yet to experience that for the first time in my life there was the sense of “life” in the right ear. Unbelievable that something I previously could only dream of now is a reality – sound on the right ear, and thus soon hearing in both ears!

Connecting the other CI-processor:

When it was time for the connection of the second processor on the left ear, the right processor was turned off. Otherwise, the process was the same as described above.

However, it was clear from the beginning that the experience of sound was much more real with the left ear – it certainly makes a difference, having had hearing on the ear before, so the brain is accustomed to sounds. What on the right ear sounded like strange plop-sounds could here immediately be recognized as tones.

Since I’ve never been able to hear on the right ear, the volume was adjusted so that it was significantly higher on the left ear. You do this because the brain needs time to get used to the sound from the right ear. It would be a severe shock to the head if the sound was at full volume in the right ear from the start.

Thus, it was immediately clear to me that getting hearing in one ear hitherto completely deaf, is not something you just do by at a snap with the fingers. It takes time for the brain to get used to the sound, and lots of training to get it to sound normal and understand speech. But I have also been prepared for this, right from the beginning – from when I decided that I would have Cochlear Implant at this ear. Not at least because the expertise, as told in earlier blog posts, have said that I should not expect to be hearing the same (i.e. as well) as with the left ear.

But already here while we still sat with the audiologist and thus only a short time after I had the sound turned on, I was able to recognize the sound of voices – including a bit with the right ear alone. With lip reading, I was able to understand what the audiologist and my parents said. But it sounded very strange, and as a kind of helium voices.

Following the alignment of CI-processors, there was little waiting time in the hallway before we had to talk to the doctor.

Here there were lots of sounds; People talking, children who rattled toys and a candy slot machine. Exactly the candy slot machine gave the first sound experience when another person used it, for now I could suddenly hear the beep that comes when they pressed the display buttons.

Overall, it was the high frequency sounds that sounded most true, which such a beeping sound also is. People who went in the hallway, doors opened and closed, the sound of the toilet and the water washed into the sink was also sounds I heard even they did not sound particularly true on this day. These sounds were little more high frequent, and was accompanied by plippe-lip and beep sounds.

Talk to the doctor:

The doctor was the same as I had spoken to by one of the preliminary studies, so he therefore already knew me and my case.

First, I was asked how it had gone since my surgery. I told that it had gone well and without complications. My wounds had healed nicely and wound clips were removed as planned.

I told him about my experiences about dizziness, which fortunately were not a problem since there was only a little bit transient if I moved the head quickly.

I told that in the month since the surgery I had plenty of tinnitus, which oddly enough has sounded like small chunks of various to me well-known pieces of music that have run on constant repeat in my head. At once funny but yet also reasonably stressful in the length having only bits and pieces repeated endlessly throughout the day. The doctor smiled, and said that it is a sign of good music memory.

Then the doctor looked at my scars and ears. As everything was as it should be, we were finished here and could take place in the corridor again, waiting to speak to the hearing therapist.

Talk with hearing therapist:

Here, we examine the equipment that came with the processors.

I was handed over a suitcase(!) with the equipment that belongs to my two CI processors. It contained extra battery packs, chargers, individual parts in a separate case and a dehumidifier for the CI processors. It seemed a little silly to get so many packages for equipment that simply was to be taken out of the suitcase and be packed out permanently.

We briefly talked about the waterproof Aqua+ equipment that I need to use (primarily) when sailing. The hearing therapist said that I would get this next time I came to Odense. She also said that I will only get this equipment for one ear, and that I certainly had to pay myself if I want it for the other ear too.

After the conversation with the hearing therapist, it only remained to find a time for the next adjustment of my processors, with a secretary. Here, however, I was going to get a little help of my mother when talk and sounds in the background made it quite difficult to hear what the Secretary said. But I got a time on December 7th, and we could now leave the hearing care to step out to the everyday sounds.

After the hearing clinic:

When we were done at the clinic, it was time for some food. We would therefore go to the same Asian restaurant that we visited just before my surgery a month before.

When we sat in the car to drive out there, I had the first surprise: I could not hear the engine run, and neither could I hear the road and wind noise! Beforehand I had expected the opposite – that the sound here would be very loud. By contrast, the sound from the turn indicator was quite clear. So it was a little weird experience.

At the restaurant, I could also make the first experiences with the new sound in “reality”. I could among others note that the sound it says when you eat food that was quite clear.

It was actually surprisingly what I was able to understand already there when I talked with my parents. With lip reading, we were well able to communicate – in fact it was indeed a relief that I now could hear something too. The talk went much easier than in the previous month, when I was completely deaf.

Everything sounded strange but I noticed, however, already that there was like there were two “layers” of the sound – a layer where my own and my parents’ voices sounded surprisingly normal, as I remember it before the surgery. But on top of it, there was a layer of noise as plip-plip-plip and beep-beep sounds that give a pretty weird sound.

After the lunch we drove home – again a strangely quiet trip for me, where only the turn indicator could be heard from the car.

Back home, I wanted to test how music sounded. I turned on some music at the living room stereo. It was a short pleasure since it sounded all wrong – in fact it sounded nothing like music! So I turned off again immediately.

I tried to listen to some other sounds like when I had to make dinner; At one time I opened the tap – opened and closed a few times, to hear the sound. It was one of the sounds that sounded most true this day.

But I could feel that fatigue was beginning to emerge.

Customizing hoses for earplugs, as mentioned above, was postponed to the next day. So the rest of the day and evening I watched some TV – with subtitles of course, and then it was time to sleep after an eventful day…