Cochlear implant

[vickylou36]

I became profoundly deaf in march due to bacterial meningitis and have had a cochlear implant. i would like to hear from anyone who is in a similar situation to myself, to see how they manage day to day with deafness/ cochlear implant.

[Tabbysoft]

Hi Vicky

Sorry about the delay in replying but my PC decided to play dead for a few days. Really sorry to hear what you have gone through but does sound similar to my own problems. The cochlear implant was never offered as an option in my case but maybe something I should investigate. One of the problems I have found over the years is that people tend to assume that if you have hearing aids etc, this is like the auditory equivalent of having contact lens and everything will be back to normal. I have the latest NHS digital aids but for me the sound quality is still something equivalent to a recording made on a cheap mono cassette recorders (showing my age here). Yes hearing aids can be fine tuned to take account of the loss at different frequencies but still a very poor substitute for working ears. I too used to love listening to music and playing the guitar but have given up as it was driving me to distraction as nothing ever sounded right.

I’m not sure if my own hearing loss was originally due to meningitis but did seem to have quite a few classic symptoms. I was at university and during the winter term caught what I thought was a simple cold. At the same time I was referred by my optician to see my GP as a matter of urgency as they had seen something in my eyes that caused concern but again this was dismissed as cold/flu symptoms. Over the next few days started to experience increasingly painful photosensitivity and then a splitting headache that felt more like a really bad migraine. Went to bed with some sort of ringing in my ears and woke up the next morning stone deaf and feeling I had been hit by a bus. Got to be one of the most surreal experiences of my life, waking up to find I was completely deaf. I was talking with a lady a few years back who had been diagnosed with meningitis and we both seemed to have experienced the same sort of horrible, double banded headache and painful photosensitivity before the onset of differing problems.

Communication in noisy situations and groups is something I still struggle with and have been told that with normal hearing you are able to filter out most of the extraneous noise and concentrate on what someone is saying. I have a Bellman & Symfon loop mic with an additional remote mic which does seem to help to some extent – bellman.com/ My problem is that I can’t get my colleagues to remember my request for only one person to be speaking at a time. This just gets really silly when they are all squabbling in a team meeting and I can’t make out what anyone is saying. I just turn the volume down and wait for the bickering to stop. Access to Work has recently recommended the Roger X system but having a fight with senior management about funding for this. Apparently this is a wizzy Bluetooth system which connects directly to the shoes of my hearing aids and digitally links to any number of remote mics. You are also able to connect an adapter so you can use it with the phone or any other audio device. I’m not sure but would imagine it must be able to connect to your implant in a similar sort of way. This might sound daft but when I lost my hearing for the second time, I was dammed if this was going to spoil my life and have gone out with post-it notes before now, just in case I wasn’t able to hear my partner. There again she has been brilliant and very supportive of my problems.

For me, tinnitus has been the most annoying part of being deaf. I had always assumed that if you lost your hearing, the world just became totally silent – totally wrong assumption. Whilst accepting that many other people have to deal with terrible pain and other horrible problems on a daily basis, this really does drive me mad at times. I’m not sure whether its changes in air pressure or something else but this can fluctuate quite dramatically and gets so loud I’m sure other people must be able to hear it. You are right that it does seem to get worse at night but it is quieter and think you tend to notice it more. One suggestion I read was trying not to listen to it – difficult I know when it feels like you have two fire alarms strapped to your head – but over time you will get used to being able to ignore it to some extent. I find that stress and pressure can make this feel far more intrusive but sadly this is an occupational hazard of everyday life.

I also understand what you are saying about feeling tired. I get home from work most days feeling totally exhausted. Yes there is a physical element to my job but it’s a sort of mental fatigue after a full day of trying to hear people. It might sound strange but since losing my hearing I have a real concern about possibly not hearing someone and they feel I’m ignoring them. I seem to spend the day with ‘hearing radar’ scanning to make sure no one is talking directly to me and by the end of the day feel shattered. I assume my brain has to work overtime for what hearing people simply take for granted.

I appreciate how you feel in regards to going out when your balance is quite poor and how this can severely affect one’s confidence. When I first lost my hearing, my balance was completely shot; I returned to that feeling of being a teenage drunk with the whole world going sideways but without the fun of some cider. I remember getting that very Les Dawson type of disapproving looks from a few old dears in Asda as I wobbled about trying to do some shopping – really, drunk at this time in the morning, disgraceful

I found that over time this did get better and think your body acclimatises and adapts to the changes. The Serc 8/16 medication didn’t really work for me but maybe you might get some positive effect from these. On a plus side I have found that I’m now immune from seasickness. I used to travel to the Isle of Man on a regular basis and the crossing could be quite rough at times. While everyone else was going green and calling on their god to end their misery, I was getting annoyed that I wasn’t allowed out on deck to see how rough the sea was. Been on some cruises over the past few years and my partner can’t understand why she is feeling dreadful and I don’t seem to be affected. Wouldn’t mind but it was only a mild swell in the Bay of Biscay.

Hope all goes well with your planned return to work. Just watch out as a lot of NHS managers seem to be really risk adverse. I have had no end of problems being challenged by managers being aware that I had hearing aids but constantly asking what I was missing. Quite a philosophical question really but that added stress can have a really negative impact on one’s actual hearing and confidence. It might be worth checking out your local NHS HR policies on disability discrimination as they relate to the Equality Act 2010 and getting your union involved. Access to Work are also a good form of additional support and can recommend the latest bits of kit that can hopefully make your work life that little bit easier. gov.uk/access-to-work/overview . This can be even be somewhat obvious but overlooked things like the location of one’s desk within an office. Given that you too work for the NHS, there should be (in theory) no problem with any funding for additional equipment but some managers do seem to think this is coming out of their own salary

Hope this info helps and good luck for the future

Paul

[vickylou36 in reply to Tabbysoft]

Thank you for you reply Paul, I will take a look at the links you have provided. Occupational health have already recommended access to work but I think it will be many months before I am able to go back due to the physical nature of the job. I am trying some equipment with my implant at present which will hopefully help in noisey situations. I will let you know how it goes. To get a Chochlear implant I think you need to be profoundly deaf and do not gain enough hearing from hearing aids im not sure on how bad your hearing loss is. It also doesn't give you back your hearing it just gives you a form of hearing that you eventually begin to recognise as normal. Maybe best to speak to your doctor or ENT consultant. Thanks again for the reply.

[Tabbysoft in reply to vickylou36]

Hi Vicky

Again sorry for the delay in getting back to you and hope some of the links helped. Thanks for the advice on the implants but hearing aids do give me a poor sort of hearing so think this option is a non-starter. My experience is that noisy situations will always present some sort of problem and the trick is to find a way of dealing with this in your own way.

When you do start to look at returning to work, as I said in the previous essay (sorry about that), check out your local NHS HR policies and be aware of the Equality Act 2010. This stipulates that wherever possible, your employer must make reasonable adjustments for anyone with a recognised disability to enable them to be able to perform adequately in their role. Hope all goes well and you finally get back to work - please feel free to contact me for any advice/support

Best wishes

Paul

[Tucker71]

Hi Paul? Hope this goes to ur inbox as I'm new to this site only came out of hospital on the 10th of October this month, I'm too deaf in both ears, ( boots hearin test said I have 10% hearin but it doesn't feel like I can hear nothin apart from tinnitus) which like u said is dreadful, it's ther 24/7 and it drives me insane, I messaged vickylou earlier mentioning I was very depressed by all wats happend after me catching bacterial meng my life has just stopped, I'm really struggling how I'm gonna cope with this deafness, and I can't see much of a future, I have no help apart from my ex partner who I'm staying with. He lives at his mums who he cares for too... I no I can't stay here for ever I've got to go home to an empty flat one day, and I'm dreading it, I say I don't have no other help because of only havin my nan prior to her passing, my mum died at 35 due to addiction problems, I read u help in that line of work, I would love to hear from u and any bit of advice u can give me, the hospital I was in didn't help one bit, as soon as I was takin out of coma they discharged me after 2 days awake, didn't explain wat was wrong, I had to go up ther last week cause they didn't send my gp my discharge letter stating wat I had so he didn't no wat exactly wat was wrong, and he's unsympathetic anyway, ....I just feel like I'm all alone, I've got a proper hearin test and ent test in November which will tell me stuff, but any hope of my hearin coming bac is slowly fading away each day as it says again and again if it don't ret within first 14 days of illness it's unli it will, I don't no if u no queens hospital in Romford essex, it was ther I got treated like I was lying, I could half lip read at times and I read they for some mad reason didn't belive I was deaf, why oh why would somone make something like that up?

I am really scared, I'm only 43, I can't cope with this, I can cope with the walking like I'm on some cocktail of strong drink & heavy drugs and eddie holding me up, people staring, and lots of other stuff it brings but not being isolated from life, I can't have a conversation, edd has to write everything down ohh somtimes he will use the amplifer amplfon Nicely gave us but like u said it's rubbish sound, and don't get much of it, and by the time he's repeated himself a thousand times , wat we was originally saying has somhow been forgotten! And then I get sad, angry, u no wat it feels like I'm being punished, tortured I fact, like I'm cursed, u may think that's a little extreme but if others knew wat it was like to have a loud buzzing noise in top of deafness everyday all day then maybe they would feel the same.

Anyway I would love to hear from u and ur funny stories too.

Claire