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My Cochlear Implant journey and the wide range of information online

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As mentioned earlier I have had a personal need for collecting as much information about Cochlear Implant (CI) as I could. It has been quite a educational journey for me to explore the experiences that other users have made but also to explore the more technical aspects of how a CI works. In this post I will present a few of the things I have found in my search for knowledge about CI in combination with some of my own considerations. I will take departure in a presentation of the process I have already been through and present relevant sources where it makes sense. There are many aspects to touch and this is there one of my longest post on this blog so far 😉

I just want to mention that almost all the videoclips that I feature in this post has an option for getting English captions.

The video below show a baby that hear her mother for the first time with CI (This video has no captions):

The process of making decisions

My process have been a little special as it was on my own initiative that I decided to investigate if CI could be a solution for me. I was not suggested to consider it. I have therefore had time for investigating what CI is and what means to get at in my own pace.

My process started because I had become aware how big an issue it was for me to have loss of speech discrimination of 60-80%. A loss of speech discrimination cannot be fixed with a hearing aid. I therefore got curious about CI and thought that it would be wise to get clarified whether or not this could be a solution for me. I therefore contacted an ENT to have him make an refferal to the audiology department at the hospital which would be able to clarify if I was a good CI candidate.

I had previously thought that CI was not something for me to consider as I am not deaf – but my new focus on my loss of discrimination made me rethink this view. I also realized that I did not really know how well CI can aid people with a hearing loss. So lets start with a short Youtube video that explains how Cochlear Implant works:

One of the things that I think has been most difficult to determine is whether or not my hearing loss was so bad that I could benefit from getting CI. I therefore quickly started to look for information about how big a hearing loss should be in order to be a candidate for CI. It has however not been easy to find a specific answer to this. The information I found in most places was that CI was for deaf people or people that had such a bad hearing that normal hearing aids was not of much help. But I do benefit from my hearing aids so it was very hard to determine.

In the period before my visit at the audiology department I spent a lot time on reading about other peoples experiences or watching them on Youtube. Below is a list of some of the blogs I have read:

Another thing that has made it difficult to determine if CI was something for me is that I have no chance at determining how CI sounds. At a CI surgery I have to say good bye to my current residual hearing. There is no turning back after receiving CI so you have to dare letting go of your residual hearing. I have therefore spent a lot time on reading about in what situations CI users are able to hear. But I have also spent a lot time on investigating how CI sounds as mention in a former post on this blog. but apart from the examples presented in that post I have also tried to make my own examples with some of the music I know. It is difficult to make these examples and no matter how I made these examples I could not avoid noticing that the sound was awful. The main reason of course is that this is a simulation and that you have to spend a lot time on rehabilitation in order to hear with a CI. For the technical minded readers that wants to make their own simulations I can mention that the necessary program may be found here: http://www.tigerspeech.com/tst_tigercis.html

In the following video there are some sound examples and some interviews with users and scientists that develop CI:

Apart from the considerations about whether or not I would benefit from CI there is also a range of other aspects that have occupied my mind. One of these things is the issue of having to be on leave from my job. This process does however have the advantage that it can be planned on the job as I have known for some time when my surgery would be. Furthermore my employer will be able to get a refund for some of my salary from the municipality after some days. When I am ready to return to my job I can do it on fewer hours while my employer still get refund for hours where I am not working because of my rehabilitation. But if we look at this the other way around and I decided not to get this surgery I would still have to fight with my hearing loss which would probably become even worse. Then it would become harder and harder for me to do my work and still be able to enjoy social situations. I am therefore not in doubt that it is the correct time for me to get CI.

An aspect that has also occupied my mind is how a CI processor looks like. The device is considerably larger than a hearing aid and you see that it has the characteristic coil that sits on the side of the head. But I have quickly gotten to the view that it is much more important to me to be able to hear than how the device looks like – so I dont mind that it is larger and that there will probably be more people that will notice it – except if I manage to cover it up with longer hair or head wear – I am however not afraid to show that I wear a hearing aid or CI 🙂

Here is a link to a lecture about CI that was sent on danish TV (sorry the audio is only in danish and there are no captions): Danskernes Akademi: …og døve skal blive hørende

And here is a documentary which was sent on another danish TV channel. (again sorry – this is only in danish and there are no captions). If you cannot see the video below you can try this link: Tv2 fyn – Øreoperation

A final important thing in relation to the decision process is that you should decide what CI brand you want. This is a very difficult decision as this is a decision for life. If you should change brand you will have to get a new surgery – so you don’t do that. There are three brands that can be chosen in Denmark:

In general most CI users are happy about their choice no matter what brand they chose. You cannot get an answer to the question of what brand is the correct one. On the hospitals they have to be impartial  so they also cannot suggest a specific brand. You have to explore the solutions from each brand and figure out what differences there are when making this decision. I read about the solutions directly on the brand websites – but here it is a major problem that all brands try to make their solution to appear like the best one – so you really have to use other sources. In this relation I want to mention a comparison sheet where some users have collected facts from the three brands so it is possible to compare the actual specifications side by side. The comparison sheet may be found here:

http://cochlearimplantonline.com/site/cochlear-implant/brand-names/brand-comparison-chart/

It is worth to mention that the above sheet was lastly updated in 2011 – it therefore does not contain information about the latest processor from Advanced Bionics.

EDIT: After posting this I was told that a new comparison sheet with updated data has been published. It does however not contain specific information about the new AB processor yet. See that sheet here: http://dl.dropbox.com/u/84378947/CochlearImplantShoppingGuide.pdf

It is hard to say what was my reason for my choice. I chose Advanced Bionics as I will be able to get a waterproof processor and the new processor when it get released.

At last I want to mention the danish CI organisation that was a big help for me in the decision process. I can really recommend finding Facebook groups where you can read about other peoples experiences if you are in the process of considering CI. In that relation I could mention the international Facebook group called “Cochlear Implant Experiences”

The surgery

The surgery is the next point on my agenda. I have had all the examinations. On Februar 15 I have to go to the hospital to have a talk with the surgeon, anesthetist and the caregivers. On this day I will receive some final information and a patient journal will be made and they will take some blood samples. After this I just have to wait for the surgery which is scheduled for February 28.

The surgery happens in full narcosis and lasts for 1½ on each ear but with a short break between each ear. I will be sent home on the following day. As I will have this surgery on both ears this surgery will make me totally deaf until I get the external processor connected 4-6 weeks later.

In order to understand what surgery I was going to have I have as part of my decision process watched a couple of surgery videos. One of the Youtube videos of the the surgery may be seen on the following link (I want to emphasize that this video show the actual surgery – so it is not for the faint): Surgery video

As with any surgery there are some risks. I will not mention all of them here but in short the main risks are:

  • Risk of damaging the facial nerve – they are drilling next to this nerve – It is rare that this nerve is damaged – the surgeon has equipment that monitor if they are to close to this nerve
  • Dizziness – the sense of balance is located in the ear and can get affected – most of these issue does however resolve over time.
  • Tinnitus can occur – but most people experience that it will dissapear when they get their external processor connected.

After the surgery

I will as mentioned go home from the hospital on the day after the surgery. I have made an agreement with my parents which will stay at my apartment in the first period. In the first period after the surgery you will naturally feel devastated because of the surgery. I have heard that the first week is the hardest but it take 2 weeks before you are allowed to be physically active.

My biggest challenge will probably be that I am totally deaf after the surgery. This is of course something that have occupied my mind a lot in relation to the decision about getting the surgery on both ears at the same time in stead of taking one ear at a time. But it is after all just 4-6 weeks without sound – I guess I will survive. I have planned to watch a lot of “silent” movies, to play some games and as soon as possible to get out on some bicycle trips – I hope my balance will not be affected.

But apart from this it will probably be a period where I will be waiting like crazy for my sound. But it will also be a period where I will be curious about if I will be able to hear from the beginning and about how fast the rehabilitation will go in my case.

Getting the sound

The most exciting thing about getting sound is definitely to find out how much I will be able to hear and understand and how it will sound. It is very different how much different people is able to hear and how they experience getting their sound. The only thing I can say about my first period is that I have the advantage that I have some hearing and that I have been able to hear most frequencies if they were just loud enough. If you for instance have been deaf for a long time before the surgery then you will have to spend more time on learning to hear all the nuances.

There are many youtube videos of people that get sound for the first time. Below is some of them. Some are a bit boring but good because they show how the the audio is connected – others are cool because the persons really show the emotions that are involved when they are suddenly able to hear again.

Der findes rigtig mange youtube videoer med folk, der fĂĽr tilsluttet lyd for første gang. Jeg vil meget gerne vise et par stykker af dem her. Nogle af dem er lidt kedelige, men de er gode, fordi de viser ret detaljeret, hvordan selve tilslutningen forløber – de andre er fede, fordi personerne virkelig fĂĽr vist de følelser, der er forbundet med pludselig at kunne høre mere, end de nogensinde har gjort før.

The rehabilitation

When I get the sound I will have to start learning to hear again. It is very different how fast this process goes – it depends a lot on how much people has been have been able to hear before but also how intensively they train their ability to hear. At my hospital they have a fixed plan that means that all people that get this surgery has to follow an intensive rehabilitation process over 3 months. You get 2 lections a week of one hour each. On top of this is of course the effort that you put in the remaining time.

I am very happy that they have planned such an intensive process – but I clearly intent to train on my own for instance by listening to audio books. There are also some websites that can be used for rehabilitation. In this relation I could mention the website called “listening room” which is a website funded by Advanced Bionics but which can also be used by users of other brands.

I have also heard that music is a good way to train the ability to hear even though music might sound awful in the beginning. I am very happy about music so I am not in doubt that this will be some of the first things I will use for training.

The following Youtube video shows how difficult it can be to hear in the beginning. In this video we see Anna Mezin that made blog called Lydfejl (this blog is in English and Danish). In the video she is training just four days after getting her sound. She only have CI on one ear and during her training she had turned of the hearing aid on the other ear just to train her CI ear. Her boyfriend is saying words that is related to a bathroom – it is clear that is difficult to understand the words so soon. Unfortunately this video is on Danish and there are no captions.