I’m now deaf and am having 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 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 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 / Melleolus which they hadn’t even seen or suspected at the hospital, and so he suggested that I get a scanner done.
This was Thursday, during Thursday night I started have some important Acouphenes / Tinnitus in the right ear and 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 thanthree days. I don’t believe in coincidences, and I wasn’t taking any other treatments)
So Saturday at the AE , saw the doctor almost straight away, we 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 becomle very serious.
Anyway the specialist asked me to come back Monday for a audiogram and more tests, no treatment was given
Monday back to the hospital this time with a friend as I couldn’t walk correctly with the leg strapped up and couldn’t understand 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% but worse still couldn’t 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 as it seemed already likely that I would need some special treatment or an implant cochlear and that the hospital was the best in the region.
Fast track and months later I upgraded my hearing aid to a ReSound Enso 3D model for the left ear, this doesn’t make any change in my understanding but its like a Heavy Weight hearing aid, as the following only concerns the right ear. Sadly not once did they try any treatment for my left ear
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 a specialist and was checked over they told me I would need to stay and so I was checked in to a hospital room, and started loads of checkups for the following seven days.
Basically during my stay, I had big doses of cortisone by intravenous everyday and injections directly in to my right tympan / ear-drum (very uncomfortable), to try to bring back my hearing, also IRM and more Scanners etc etc
Sadly nothing worked, my hearing was totally shot in the right ear, and with the left ear unable to understand even though it could hear, life had suddenly become very complicated
Over the coming weeks I had tests done at Salpetiere and was finally given the OK for an implant cochlear as nothing had worked to recuperate my hearing loss in the right ear, I was over 90db loss which is basically a 90% loss
After a week in hospital and a couple of weeks at home, with some visits between, I was finally was given a date for an operation to receive a Cochlear Implant, the date was set for the 18th of February 2019
As the operation was meant to be early in the morning, I was hospitalised the 17th evening, but arriving at the hospital I was told that the operation would 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 theatre, was introduced to the nurses, jumped up on the operating table and off I went to sleep
About three hours or more (the operation takes between two to three hours, though I never learn’t how long it actually took) later I awoke in the salle de reveil / recovery room, not having a watch I had no idea of the time, extremely groggy they kept me there for several more hours and I was finally wheeled to my room around 7 pm.
My head hurt, and had a really big headache, but was hungry and around an hour later I was able to eat dinner, oh yes !!!
You come out of the theatre with a bandage around your that’s is very tight around the head , but other that that no outward signs, but boy does your head hurt
After dinner I even walked around the ward a little, though was suffering from a slight dizziness
The night was uncomfortable, you cannot sleep on the side that you were operated on as it’s painful, even on your back isn’t top either, and of course you have a drip in your arm that always seems to get in the way
Managed to eat breakfast, though had a nice banging headache (which basically lasted for about two weeks). after breakfast they took of the bandage, what a relieve, and then I had a scanner to see if all was correct inside of my head and then around 11 am was able to leave the hospital , direction home by taxi
Arrived home to see my wife and sit down for a meal, this actually didn’t go down well, was more and more dizzy, and at the same time the stomach was playing up, apparently the after effects of the anaesthesia and especially when 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, like when when you got a very 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, and the dizziness was quite often, so basically for around two weeks you do nothing
A control visit at the hospital and to take of the plasters that were covering the wound, all was extremely clean and shown in photos. I was starting to feel more normal like after this time, though still stomach and dizziness were playing up
It’s switch on the implant day, a two hour meeting at the hospital to fit and switch on the implant (the outside parts). 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, and do a sort of special audiogram test, the following rendez-vous , once every month for almost a year would be to adjust the 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, and this for me was 22 times as the modal I have has 22 contacts
After the settings were finished now came the the moment to see what would happen, she switched on the implant.
I’ve read many reports from different people about this, most said that they could hear noises but could 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, as straight away I could understand the Dr when she spoke to me
Now get me wrong, it isn’t at all like a real normal voice, it was like a child who had just breathed some helium gas very childish, very tinny, but I could 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 as my ear or rather as my brain got used to the implant, but after three weeks, it isn’t really any different, voices are still really strange, even tiring after a while, but I can understand a lot more than before
I am now waiting the beginning of April for my first adjustments rather than just the on /off , and hopefully we’ll be able to get the voices to sound a little more real
I can still not understand the TV, Telephone,radio or music, even sitting at home quietly with just the Hi-Fi I cannot make out what song is playing, its a wait and see game for now
The right side of my head still hurts a little, it really does take so time to heal and start feeling normal again. I’ve stopped taking pain killers for about 10 / 15 days now.
About a week later, I 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, and as 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 spell, but as long as I didn’t stop I was OK.
I’m still not really able to sleep on the right side, as it’s still quite tender especially behind the ear its tender and the Nucleus 7 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, Nucleus 7 need to take a lesson from their designers.
Saw my Osteopath today, my Skull, Jaw and Cervicals (bones in the neck) all out of place, that’s probably due to the way you are manipulated on the operating table, so after having these all nicely put back in place I noticed that my dizzy spells were less after, thought had not disappeared.
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, but hopefully time will make this better
30 April 2019
I’ve now had two rendez-vous for adjustments, the robotic / tinniness / helium children’s voices is 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.
So 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, and still have slight dizzy spells (basically when you turn your head, ex : I’m writing this on one screen while play on another screen)
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
Television is still impossible, music as well. Impossible to make out / understand the instruments and voices. I can play on my hi-fi 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, it’s better though still difficult to understand 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, as both talking at the same time is impossible (TV streamer by Cochlear)
When I say communicate, again this is 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, or when then is a lot of background noise, like in a restaurant, again its difficult 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
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 anyway, unless he shouts at you.
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, and 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 Appli 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 mostly understand. Though I needed to get the guy to repeat himself often and had to ask him to talk slowly. I got it done, but it was difficult, you can’t really ring someone and just have a chat.
So a jump forward with some news
Basically nothing has changed since June of last year, Conversations on a one to one basis, on normally Ok, with more people, a dinner party, or at a restaurant, it’s still complicated, I can rarely understand the waiter for instance I need ti ask them to repeat themselves, I need people to talk and look at 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 are no reverberation, certain rooms, with a lot of soft furnishings are 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.
Television, radio etc are still impossible, I can hear the sounds but its like someone talking though a blanket, 95% is completely unintelligible, I can stream the TV when my wife goes to bed, or I’m alone, but rarely do it as again, its not very clear, its more uncomfortable than anything else, Also you get used to have little or no sound and just reading the subtitles, it doesn’t really bother me
Music is impossible, again I can hear it, but am totally incapable to knowing who or what is playing, I can listen to U2, Archive or Bowie, (I know I have/had such good taste), but sadly it’s just noise.
I know an awful lot about music as I ran my own music company for 30 years, so this is the most frustrating part for me.
ON a Cochlear implant they have 22 electrodes but 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.
So I’ve got 10 electrodes switched on, that seems to be slightly better than 8, and now 11, why 11 ? 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, though I’m going to try and get her to do it as I want to test 12.
Until now you could only stream using a Apple iPhone, since Android 10 came out this 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, and so for them it’s useless, but I will not do it. Why?
For a couple of reasons, firstly it brings me a certain sound that I don’t have with the implant, more bass and middle range, if for instance I totally block my left ear sounds are even harder to hear and understand with the implant. Also having two implants means that you are TOTALLY deaf when your not wearing them,
If one day the left ear finally gives up on me then I’ll get the second implant, but not until that happens. Here’s why.
A couple of weeks ago there was a storm where I live, I was in bed and heard a strange noise, so 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 aware of things around me without the implant.
Soon in March 2020 I’ll arrive at the one year stage (It’s February now). The monthly and lately, once every three months meetings for the settings are now finished, I will be only a annual meeting.
A implant is better than being deaf, this is certain. There is some really clever tech behind it, 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