I’m now deaf and have a Cochlear Implant installed in my right ear
In November 2018 I went trail running as I often do. While out running, I slipped / tripped and fell over. Feeling a weirdish pain I knew straight away that I had probably fractured or broken something in my left ankle.
Later in the evening, direction the local AE for a check up and a X-ray. As there wasn’t a specialist in the hospital that night. They just strapped my ankle and told me to come back the next day.
Two days later I saw the specialist at the same hospital and he like the doctor the night before just strapped my ankle and suggested some blood thinners as I wouldn’t be able to move the leg correctly for a couple of months. The doctor didn’t see the fracture, just thought I’d badly sprained my ankle.
I went and saw my own doctor who after looking at the X-ray was certain that its wasn’t just a sprain but a fractured Maléole / Malleolus which they hadn’t even seen or suspected at the hospital. He suggested I get a scanner done.
This was Thursday. Later, Thursday night I started have some important Acouphenes / Tinnitus in the right ear. So the next day I rang the hospital to ask if the blood thinners have any side effects on my hearing, they said that they weren’t / couldn’t answer my question and told me to ring the 15 (emergency service) and ask the same question, which I did.
They informed me that no. No side effects, but told me that Saturday (the next day) there was a ORL (specialist for ears) would be on standby at my local hospital and that I should go and see her. (all the doctors then and later stated that the blood thinners had nothing to do with my loss, all I know is that when I started taking them the Acouphenes / Tinnitus started in the right ear and my hearing died on me in less than three days. I don’t believe in coincidences, and I wasn’t taking any other treatments)
So Saturday at the AE. I saw the doctor almost straight away. She realised that my right and left ears had already badly degraded as I was having a hard time understanding her.
For info both my ears has been in bad shape for over three to five years. Too much loud music. (I was in the music business) and also I’m a pure Walkman generation. Both my ears ave had a small hearing aids for years now, but this suddenly had become very serious.
The specialist asked me to come back Monday for a audio-gram and more tests. I received no treatment .
Monday back to the hospital, again with the same friend as I couldn’t walk correctly with the leg strapped up. I was having a really hard time understanding what was being said to me.
The problem was that in those last three days my hearing in the right ear had gone from normal to totally deaf. I could hear almost nothing at all, later an audiogram showed a loss of 90db, which is about 90% .
And later we found that the left ear had lost about 60%. Worse still it no longer understand any spoken words. I was hearing but not understanding.
They suggested that I have some scanners done. So scanner of my ear and at the same time for my ankle.
My local hospital then said that were totally incapable of understanding of why the sudden loss or doing anything for me and told me to go and see the hospital Salpetiere a Paris. It seemed already likely that I would need some special treatment and that the hospital was the best in the region.
Direction Paris. With my wife. Direction, the ORL (French for ears, throats etc) department. A little wait but to be honest it was quick. After seeing the specialist. I was told that I needed to stay and was checked in to the hospital. Now started loads of checkups and for the following seven days.
During my stay, which lasted seven days. I was given big doses of cortisone. By intravenous everyday, also injections directly in to my right tympan / ear-drum (very uncomfortable). This to try to bring back my hearing. Also IRM and more Scanners.
Sadly nothing worked. My hearing was totally shot in the right ear. With the left ear unable to understand words even though it could hear them, life had suddenly become very complicated.
Over the coming weeks I had more tests done at Salpetiere. It was suggested that I receive an implant cochlear. Nothing had worked to recuperate my hearing loss in the right ear. I had over a 90db loss. Basically a 90% loss
After a week in hospital and a couple of weeks at home, with more visits between. They gave me a date for the operation. A Cochlear Implant for my right ear. The date was to be the 18th of February 2019.
The operation was to be early in the morning. I arrived at the hospital the 17th evening. Arriving at the hospital, they informed that the operation would now be early afternoon rather than the morning.
The day came. No breakfast of course. So I waited patiently in my room until they came and got me just before 1 pm.
I walked with a nurse to the operating theater. She introduced to me the Doctor and nurses. All very nice. I jumped up on the operating table and off I went to sleep.
Three hours later
About three hours later (the operation takes between two to three hours, though I never learn’t how long it actually took). I awoke in the salle de réveil / recovery room. Not having my watch, I had no idea of the time. Extremely groggy they kept me there for several more hours. They finally wheeled to my room around 7 pm.
My head hurt. I had a really big headache, but was hungry. An hour later, they brought me my dinner. I was able to eat, oh yes !!!
You come out of the theater with a bandage around your head that’s is very tight. Other that that no outward signs, but boy did my head hurt. I had one really bad headache.
After dinner, I even managed to walked around the ward a little, though was suffering from a slight dizziness.
I ate breakfast, though still had a nice banging headache (this basically lasted for about two weeks). After breakfast they took off the bandage. What a relieve. I then had a scanner (no IRM/MRI as now fitted with a Cochlear, you cannot have one) to see if all was correct inside of my head. All was good with the scanner and around 11 am was able to leave the hospital. Direction home by taxi.
I arrived home to see my wife and sit down for a meal. This actually didn’t go down well. I was more and more dizzy. At the same time the stomach was playing up. Apparently the after effects of the anesthesia and the dizziness after being operated on the ears.
For the next two weeks I basically went from headache to headache. Your head not only hurts but it’s all ‘stuffed’ up. It’s like when you got a really bad hangover. I only took paracetamols and I don’t like taking stronger stuff. The stomach also played up for well a over a week. The dizziness was quite often, so basically for around two weeks you do nothing but feel sorry for yourself.
A control visit at the hospital, to take of the plasters that were covering the wound. All was extremely clean as shown in the photos. I was starting to feel more normal like after this time. Although stomach and dizziness were playing up.
Big day today. It’s switch on the implant. A two hour meeting at the hospital to fit and switch on the implant (the outside parts, me being me, I choose a discreet colour, WHITE….).
The rendez-vous was at 4 pm and set for two hours. I didn’t know what to expect although having read up a little. I knew that basically today’s meeting was to switch it on. Do a sort of special audiogram test and adjust the implant’s settings.
The settings are a bit like an audiogram. You tell the Dr when you can first hear the bip and again when the bip is comfortable without being too loud. This for me was 22 times as the model I have has 22 contacts in my head.
After the settings were finished now came the the moment to see what would happen. She switched on the implant.
Let’s switch it on
I’d read many reports from different people about this. Many said that they could hear noises but couldn’t make out or understand voices. Well I was lucky, this maybe due to the fact that I had only lost my hearing 5 months ago. Straight away I could understand the Dr when she spoke to me.
Now get me wrong. Her voice wasn’t like a real normal voice. It was like a child who had just breathed some helium gas, very childish, very tinny. But I was able understand most things being said, though I had to concentrate.
The rendez-vous was finished for the day having taken just over two hours. The Dr said that the sounds should change and become more normal as my ear or rather as my brain got used to the implant. After three weeks, it wasn’t really any different. Voices are still really strange. Tiring after a while, but I can certainly understand a lot more than before.
I’m still not really able to sleep on the right side, as it’s still quite tender. The Nucleus 7 (the cochlear model) rubs against the skin. I find the Nucleus 7 a very bad design. It’s design is rather ‘square’ behind the ear and not at all comfortable. No where near as good as the ReSound Enso 3D that I wear in the left ear. Although both are made by the same mother company, the ReSound is far better suited to being worn behind the ear. It has a contour shape that’s comfortable. The nucleus 7 need to take a lesson from their designers.
I saw my Osteopath today. My Skull, Jaw and Cervicals (bones in the neck) were all out of place. That’s probably due to the way you are manipulated on the operating table. Once having these all nicely put back in place I noticed that my dizzy spells were less. Though had not disappeared completely.
Next step will be the first real settings to the implant, beginning April, I’m hoping that they will be able to get rid of the tininess in voices and make them sound more real, and therefore making them easier to understand.
The first two weeks after the operation are horrible. Hopefully time will make this better
For the moment. I can hear and understand some of what is said to me, but only in a one to one situation. At dinner party’s, restaurants, it’s very complicated, to be honest almost impossible. TV, Radio, Telephone is still a no no.
The ear even after a month since the operation is still tender. I still have slight dizzy spells, basically when you turn your head
So basically listening and talking to people is only possible as a one to one basis. As soon as there are more than a few people I can’t understand what they are saying and more that a meter or so away it’s impossible. Also you really need the person to look at you while talking, just being able or read or rather just seeing their lips helps a great deal with the comprehension.
TV or Music
Television is still impossible, music as well. Impossible to make out / understand the instruments and voices. I can listen on my hi-fi to a David Bowie song or U2 and not know who or what is playing.
I have and and can stream the TV directly into the implant bypassing the microphones using a special box, connected by Bluetooth to the implant. It’s better, but still extremely difficult to understand most of what is said and to be honest I need the subtitles on even when streaming. I cannot follow a TV conversation by itself even when being streamed. Also if my wife talks to me I have to turn it off. Both talking at the same time is impossible (TV streamer by Cochlear)
I can communicate on a one to one basis, speaking with the person in front or next to me. When there are many then it’s difficult almost impossible and if two or more people talk to you at the same time, then that is a big no no. With a lot of background noise, like in a restaurant, its almost impossible and extremely tiring. When I get home after for instance a dinner party, I just want to take the implant off and have some calm.
Sport at last
I’ve slowly started working out at the gym again, as I had the green light to do some sport. Though very slowly as I’ve not done any sport since breaking the ankle.
I’m now 61 and five months and no sports takes it’s toll. I actually jumped on my bike again, though this was silly of me as still having dizzy spells, but as long as I didn’t stop I was OK.
I’ve started most of my sports, biking, swimming, gym and crossfit. I don’t wear the implant for these. At the Gym or crossfit there is just too much ambient/ background noise, so with or without it I cannot understand anyone. On the bike it’s impossible as the microphone just captures the wind even if it’s not a windy day, its like have a wind storm right in your ear, extremely unpleasant and even the rider next to you you can’t understand him anyway.
I am now waiting the beginning of April for the first adjustments, rather than just the switch on. Hopefully we’ll be able to get the voices to sound a little more human.
The right side of my head still hurts a little. It really take time to heal and start feeling normal again. I’ve stopped taking the pain killers for about 15 days now.
30 April 2019
I’ve now had two rendez-vous for adjustments. The robotic / tinniness / helium children’s voices are basically the same, making it a pain to listen to people at the end of the day. It’s very tiring. The meetings for the adjustments take about and hour, the Dr has quite a lot of work or rather adjustments to make.
15 May 2019
I had now about 3 or 4 settings updates at the hospital, they don’t really change much, basically they just test the minimum level that you can hear and the maximum level that is comfortable for you. Again these meetings takes an hour every time.
I seem to be lucky in the fact that I understood straight away from receiving the implant, certain personnel apparently takes months or even longer. Even now though voices are still not natural.
Sounds or rather voices are still very ‘high’, ‘tinny/robotic’ or like ‘Tic and Tac’ the cartoon on the TV when my kids were young, or again like someone who has breathed helium gas. This is extremely tiring in a way, you hear your own voice that does not sound natural and think how stupid I must sound to others , though of course they hear you normally. At the end of the day, sometimes its nice just to unplug myself and have some quiet.
5 Juin 2019
I made my first real telephone call today, to a bike shop in England as ordering a new bike. Streaming directly into the implant with a iPhone, like the TV streamer.
Firstly I tried with just the implant, this was as I expected rather difficult, basically because of the lack of ‘bandwidth’ with the implant, there is not enough bass, and as always too tinny. Then I added my left ear ReSound hearing aid (as they can work together and I can stream to both of them),
Now this was much better, as I get the ‘volume’, more ‘bandwidth’ making the telephone call far easier to understand, It’s not perfect but I was ably do talk and understand most of what was said. Though I needed to get the guy to repeat himself often and had to ask him to talk slowly. I got it done. It was difficult, you can’t really ring someone and just have a chat.
Basically nothing has changed since June of last year. Conversations on a one to one basis, are normally OK, with more people, a dinner party, or at a restaurant, it’s still complicated. I can rarely understand a waiter in a restaurant. Often have to ask them to repeat themselves.
I need people to look at me while talking to me so that I can capture as much as possible. It’s very important that people look at you when talking, you will be surprised the difference between someone looking away or looking at you while talking to you.
Also the quality of hearing depends where you are, for instance I hear better when outside, (unless there’s wind or rain) as outside there is no reverberation, certain rooms, the kitchen at home is a pain. A room with a lot of soft furnishings is better, a small room is probably the worst as the sound bounces off the walls. When I’m seeing my Ostéopathe for instance, this is in a very small room with low ceiling. I can hardly understand her at all.
On a Cochlear implant they have 22 electrodes. Only 8 are switched on.
I have had the setting on my Implant changed and now have 11 channels working rather than 8 as standard, why ? because for me its like an equaliser. The more channels you can have the better the sound quality. Does it make a difference ? to be honest I’m not really sure.
So I’ve got 11 electrodes switched on, that seems to be slightly better than 8. The problem is the more electrodes you have on the quicker the battery dies, as they eat juice, (you are ‘tickling’ your audio nerve with more electricity) and the doctor can’t do more without changing lost of settings apparently.
Until now I could only stream using a Apple iPhone. Since Android 10 came out the Android app should be capable of doing it as well, except it doesn’t work. Cochlear makes pretty clever implants but are dammed useless with their Android app. February 2020 and I’m still waiting for it to work.
So what’s next?
The doctors what to implant my left ear, as it doesn’t understand words any more. For them it’s useless, but I will not do it. Why?
For a couple of reasons. Firstly it lets me hear sounds that I don’t have with the implant, more bass and middle range. Ff for instance I totally block my left ear sounds are even harder to hear and understand with just the implant. Also having two implants means that you are TOTALLY deaf when your not wearing them. For the moment even without the implant on I do hear some sounds with my left ear.
If one day, when the left ear finally gives up on me then I’ll get the second implant, but not until that happens. Here’s more reasons.
A couple of weeks ago there was a storm where I live. I was in bed but heard a strange noise. When I got up I checked outside, some roof tiles had come lose and slid down the roof, having two implants and not wearing them I wouldn’t have heard anything. You can’t wear your implants to bed when sleeping.
Also I often drive without my implant (for long distances) as the microphone picks up all sorts of mechanical noises which is a pain. My left ear isn’t as sensitive so I can hear if someone sounds their horn for instance, so I’m still aware of things around me without the implant.
In March 2020 I’ll arrive at the one year stage (It’s February now). The monthly meetings will now be every three months meetings for the settings are now finished. then after it will be only a annual meeting.
A Cochlear Implant is better than being deaf. That is a certainty.
A Cochlear Implant. There is some really clever tech here. You are or you can be pretty independent with it, I am anyway. Sadly the quality of the sound is far from natural, but it’s better than nothing. So I’m quite happy with it