If you have read any of my previous blogs you will firstly know that I was born with microtia to my right ear and therefore as a result was born with no hearing to my right ear due to there being no ear opening, however at the age of 18 I was fitted with a Bone Anchored Hearing Aid ( BAHA) and will know that over the past year I have been without my BAHA due to infections..
You may also remember that at the age of 16 I was diagnosed with bilateral sensorineural hearing loss, meaning my left ear had now developed a hearing loss.Now it was never 100% and has always been slightly below normal but had never been to a concerning level or to a level where anything needed to be done about this..
However at the age of 16 it was picked up on a invasive hearing test where I was in the typical booth for air conduction hearing tests (where sound goes into the ear as it should) via headphones, I then had bone conduction tests and a whole bunch of others to test the overal state of my hearing as part of the process of getting my BAHA for my right ear, and it was only then my left ear got picked up and identified as having a hearing loss and I was rushed through as an emergency to get a hearing aid fitted as it had dropped a lot and action needed to be taken..
Well….. I have not had my hearing tested now for about 5/6 years this is through no fault of my own or a lack of trying.. I have on multiple times spoken to my consultant and said I wanted my left ear tested and was reassured that my left ear was fine and how the BAHA would be able to deal with the hearing on both sides and that I didn’t need my hearing aid anymore and how everything was fine medically with my left and I was just worrying ( I am a massive worrier) , so i accepted this and was like OK fine this is a medical professional working at a specialist ENT hospital he knows what he is talking about .
However when I still was concerned something wasn’t right and again at another appointment mentioned my concerns I was told to wait until my next appointment with audiology and speak to them about this…. Now… This was the next issue I had not seen them in a couple of years at this point and I told my consultant this, and was told that audiology would be in contact with me, OK fine again I accepted this and awaited hearing something (pardon the pun this was not intended)
I never did hear back from audiology and when I next saw my consultant I asked again and again expressed my concerns for my left ear and was told I would get a letter from audiology with an appointment, I explained that this had not happened and how the last time I had my hearing tested was just before I got the go ahead for my BAHA ( November 2013) and then it was just checked quickly with speech tests when I got my BAHA fitted , and how surely I should be being seen every year for hearing tests? especially so now knowing that my left ear had a loss and that this obviously could change or my hearing aid could need adjustments or what have you?
Still nothing and eventually I gave up trying as I just thought well it must just be me being daft and over thinking and worrying about things as even when I said my left hearing aid was not working this did not seem to concern the hospital nor did they do anything about it, It was only that I twice tried to sort it myself, firstly going to a local walk in service in my local health centre where every so often a charity called Hearing help Essex go and do hearing aid repairs and I got them to take a look and they retubed my hearing aid and cleaned it out and it worked again for a while, but then stopped working again and the hospital told me how I shouldn’t be using it as my BAHA communicates to both cochlear and this would be enough, so I explained I had gone back to using it as I felt my hearing in my left ear was suffering and was told I didn’t need it. Now this was a good couple of years ago
It was only when I was without my BAHA for nearly a year that I dug it out and began using it again, However I didn’t like the sound quality I felt like I was underwater and as though everyone was speaking very weirdly it was awful so I had no choice but to not use it as it was just a hindrance rather than a help.
As you will know if you have read any of my more recent blogs I have been increasingly worried about my left ear and have felt like a lot has changed in terms of what I can and can’t hear such as I am now fully relying on subtitles on my bedroom TV because sound wise i get told by my parents to turn it down as they can hear it over their TV, my car radio is on full volume and it still does not seem loud enough for me and I’ll still be sitting their trying to turn the sound up until I realise it can’t go any higher, a work colleague actually commented the other day when I got to work to do the night shift that she had gone outside for a smoke and could hear Ed Sheeran playing and how she assumed someone had driven past with it loud and then realised she could still hear it and realised it was me in my car and told me how she could hear every single word of the song and the music too and yet I was quite a way from her.
I feel socially I cannot hear barely a thing and am soley relying on lip reading or if I am with my boyfriend David , choir or signing friend that I am relying on sign language and lip reading to communicate because I cannot hear..
Even yesterday when I went up to London with mum and her two friends walking into town even standing with my good ear facing mum or mums friend I could not hear them properly and was missing a lot of the conversation and using guess work to work out the missing parts ..
Choir I feel as though I can hear the base of the music but I am finding myself struggling more than ever with hearing the lyrics, now this isn’t new I have always struggled with hearing lyrics in songs and mishearing them or not being able to work out the odd word here and there, however now I am just about hearing the words at all let alone mistaking them ..
I have been so nervous to book a hearing test to know what is happening because since as long as I can remember loosing my hearing has always been my biggest fear, OK it’s not my biggest fear and I don’t know now really if I would regard it as a fear as such .
However that said does it still worry me if I were to loose my hearing absolutely. why?
Purely because if I am going to be honest with myself and well I might as well be as there is no point lying I know at some point I am going to loose my hearing.
No this has not ever medically been told to me, however let’s be real this is reality for me and always has been the reality but I think I’ve known this more so since the age of 16 when my left ear required aiding.
I mean if it already has a loss yes it is possible for it to be maintained but of course there is an increased chance it will continue to deteriorate .
However my worries remain with work what in time will happen in terms of me working and having a career if I cannot hear as this will possibly mean I cannot go onto doing interpreting courses once I eventually get to level 6 qualified in BSL as how can I interpret if I can’t hear and so then as well what happens in any job I have if I cannot hear? , my parents and boyfriend do not sign so I would be unable to communicate with them ,although yes David does know the basics, I have always know I want my own family some day and to have children will I ever get to hear my baby cry? ,These are very much still unknown so I don’t like to worry about these things until that time comes , it comes and will deal with it as and when it happens .
I decided I needed to bite the bullet and booked a hearing test at a local specsavers despite my gut instinct and nerves telling me I knew the answer and the outcome of this hearing test .
I just had to know and find out what was happening , yes this was scary and this does not get any easier for me , as every-time so far my gut has told me something in regards to my hearing it has been right, so this was scary and I was so nervous , however I knew I couldn’t put this off and I had to do this because otherwise nothing was going to change or get any better and well I would never fully know what was happening if I didn’t.
I went for my hearing test and did all the usual things of sitting as close to the office door in the waiting room and positioning myself so I could visually see when I was called through and also so that I could try to hear my name too.
I got called through and I am sitting opposite the audiologist called Amelia, who seems quite nice and asks me why I am here today and if I have had any hearing issues in the past and I explain all my hearing background with microtia, how I’ve never had hearing in my right ear until I got my BAHA at the age of 18, how my left ear has always had a mild loss up until I was 16 when I was told it had suffered a loss and was diagnosed with bilateral sensorineural hearing loss and was aided for this, how I have been without my BAHA for almost a year now and how I am increasingly concerned about my left ear from the additional pressure it has been put under .
Amelia then asks me if I have noticed any changes so I explained about having to use subtitles on my TV, about the car radio being turned up to full volume, missing conversations etc …
Amelia checks my left ear to ensure that my ear is all healthy and clean , which it was so this is good to know . I then went into the hearing booth and had the headphones put on as is standard and told to push the button when I can hear the sounds being played and was told how this will test the quieter sounds so there may be moments of silence..
Well there were quite a few moments of silence , I actually think more silence than not if I am honest, I knew then something was up as I felt it was strange to not be hearing a lot of sounds and did not even know the test had began and especially when there were a lot of silence I felt this was not normal and that there usually is more sound than not. I again knew something was up when Amelia kept looking over at the booth so felt something must be wrong as obviously she can see on the computer when sounds are being played and when I am reacting to it , and clearly she must have been playing the sounds and I was not hearing them .
She did this at least 3-4 times so again my gut instinct kicked in telling me something was wrong .
Amelia finished the test and came to let me out the booth and remove my headphones, I then go and take seat back where I was before sitting directly opposite her to get the results.. The nerves massively kicked in at this point so I just knew my gut instinct had been right this whole time.
I sat down and Amelia began telling me how my results were on the screen and began telling me about how we already knew my right ear was down and so obviously neither of us were concerned over this as we had known and expected this and we hadn’t tested this side, after this Amelia did not seem to know what to say to me or how to tell me my results, so again I knew that the results were not great and that there was a problem , in a way she kind of brushed around the subject and didn’t really tell me what was happening just ermming and arrring and talking about my right ear..
Eventually after a few minutes she still without telling me what the problem was just quickly said so your right ear is down and we know this and then wuikly rushed out your left ear is on par with this , before saying yes it could do with some form of aiding and asking if I am still under the hospital for my BAHA ..
I explained how yes I was still seeing my consultant surgeon Mr Joseph for my BAHA where I am still having post operative checks and how my BAHA is not working and due for upgrade so I will be having to go back about this at some point however I did also explain I did not know when this would be as I had not been seen by audiology for around 6 years now , and explained how I may be having to go to my GP to get a referral back to them.
Amelia said how she thought it would be for the best for me to take my results with me to the hospital either when I next see my consultant for BAHA post operative check or to the audiology department when I can eventually get a-hold of them and get things sorted with my BAHA . Amelia told me this was just because she felt if they were already currently dealing with my right ear that she felt it would be best for them to take a look at what was going on with my left and sort out treatment for this but kept reiterating to me that I needed some sort of aiding for my left and that this needed to be done basically without her saying it ASAP .
Amelia explained that she thought it was better for the hospital to take a look and then went on to telling me that if I did not get anywhere with the hospital to go back to them and they would see what they could do for me but she was pretty certain that I should go back to the hospital and go NHS not private, which surprised me as surely they are supposed to try to get people to buy their private hearing aids and to go with them?
Amelia printed the results out for me to take to the hospital and folded them up inside a leaflet and sent me on my way.
Honestly I didn’t really know what to think or what to make of the appointment I obviously knew something was up but I had no idea I just felt like I didn’t get much information about what was actually happening and feel that I should’ve been told.
Instead I came home and began annalysing my audiogram and found from looking at a few trusted websites that this is how you work out what level of hearing loss you have :
so basically pulling this apart from using the above graph and a trusted website this is what I was able to find out.
Normal hearing level should be between -10 – 25
Mild Hearing loss is between 26-40
Moderate hearing loss is between 41-55
Moderately serve hearing loss is between 56-70
Serve hearing loss is between 71-90
Profound hearing loss is anything between 91-120
so on an audiogram this is shown by a blue line which represents your left ear and a red line which represents your right ear and everytime you press the buzzer it makes a mark on the chart … .this is what my test results looked like..
Sorry I appreciate this not very clear, this is due to me taking the photo on my phone .From using the graph above I was able to read my results and interpret what this actually meant in terms of my hearing … at the top of my audiogram in the top right hand corner it tells you each ears total score/ loss
So my right ear which was not tested today had a score of 75 meaning that would place my right ear in the serve which I expected and have known since birth although it always shocks me that it is not in profound as I cannot hear anything that side with my BAHA.
Anyway and then my left ear score was.. 68 meaning this places me into the moderately serve classification only just though , as 2 more decibels and it would be serve … eek. This was and wasn’t what I was expecting to hear (pardon the pun this was not intended)
I knew that it had deteriorated from what it was around 5/6 years ago with the fact I am forever turning my TV up louder and then being told off for doing so as it’s too loud that my parents can hear it over the TV downstairs and so I then rely on subtitles , the car radio being on full volume and still not sounding loud enough, not being able to hear the lyrics to songs in choir and relying on the base to indicate what song it is and Carol lip patterning the song too, struggling to hear in social environments so again choir I feel I cannot hear or take part in conversations I;m struggling more than ever to hear Carol speaking to the choir, going out and about with my parents and David again i’m struggling and only relying now on lip reading.
However honestly I don’t know if I was quite expecting it to have been such a big jump down the scale , but then when I think about it in someways I feel like well I must have subconsciously known this though as I feel if my hearing had only deteriorated slightly I probably would not be noticing anything different like my radio being turned up full volume , I’m only noticing it because I want it and need it louder and it doesn’t go any louder.
I will admit I did feel a little upset at first about it but this literally lasted a couple of minutes if that before I was like OK well these are the results , it is what it is now lets just get on with it , move forward figure this out and get the ball rolling in getting this all sorted out , as well honestly there is nothing I can do about it apart from taking this information and doing something about it being upset or negative about the whole situation will not change anything it’s just one of those things really and I just have to get on with it ,face up to it accept it and carry on really.
I then went online to try to find out more about what this type of loss meant and what this could mean for me really just so I could get a clearer picture and understanding of everything really and I found a few things on websites that are very trusted that rung true to me such as basically describing all of the new things I have noticed such as subtitles , loudness of TV and radio and social situations which made me more certain this was a correct diagnosis. One website that popped up was Cochlear and this is a website I very much trust as this is the company that makes BAHA etc and so I do trust their information and I read through their website again a lot of this rung true too and I was directed to take a short test on their website of answering questions about what I can and can’t hear etc and here is my results from that:
Again I apologise this photo was taken on my phone so I know it may be difficult to read so basically it says I scored 59 out of 60 and it then says underneath How does your hearing compare to others? and then says Your score of 59 is in the upper 1 percentile of adults with hearing loss and then above all of this says what solutions may be appropriate for me and says ACTION needed : Hearing solution is needed Cochlear Nucleus Hybrid Implant , Cochlear Nucleus Implant may be the solution for you.
This did shock me as in some ways it just made everything I was seeing on the audiogram , the way Amelia the Audiologist had behaved and acted in not knowing how to tell me the audiogram results, everything I had found online to be all correct and true information . It now in someways made sense why Amelia was so adamant I needed to go back to the hospital and down NHS route , as I just feel surely if it was a case of just needing a hearing aid that she would have maybe felt better in delivering my results to me and would have surely pushed for me to buy a hearing aid from them but the fact she kept reiterating that I should get a referral back to audiology kind of now made sense , as maybe perhaps I was not going to be suitable for a standard hearing aid.
The first person I told about any of this , honestly was my boyfriend David as I had said to him about being worried about my hearing and how I had booked the test and was nervous about it and after having the test done I needed to talk to someone about it and honestly as much as I love David and had expected him to be one of the first I hadn’t expected him to be THE first.
I had thought about this before the test and for a while really who would I tell first and quite honestly I always thought it would have been either
Ann Sargent- as she has been there from the beginning and every step of the way with the whole BAHA journey as well as volunteering for cochlear and having contacts at the hospital and would possibly be able to get things moving quicker. I also felt Ann having a hearing loss herself would be able to be more supportive and understanding towards my situation and felt she may be of a great deal of help to me with the while situation and would be able to offer a lot of advise and help.
Carol Cook – was another I thought would possibly be the first person I spoke to about it all as Carol has a fantastic understanding of deafness as she is a CODA but mainly more than that because Carol is my sign language tutor as well as choir leader and obviously this is important information for her to know and be aware of and I just felt Carol would have an understanding as she knows about my hearing and BAHA and everything anyway and felt she too would be very supportive and of help to me.
Paula Parker- Again Paula was another person I thought may possible be the first person I spoke to about it as Paula taught me level 1 sign language last year and is absolutely fanstastic in what she does, not only this but Paula also works supporting deaf students and so again I thought Paula may be one of the first I turned to for this reason as I felt with Paula working to support deaf students that she may also be able to be of help in supporting me with this and offering help and advise too .
But yes it was actually David I told first and then I told Ann , I had not planned on telling anyone after I told David until after I had seen my GP and asked for a referral and until I had an appointment with audiology at the hospital before letting others know what was going on just in case for whatever reason Specsavers test was wrong or if the hospital did more in depth tests and it wasn’t as worrying or whatever.
However I ended up telling Ann as she had text me to say she was trying to get an email across to the repairs team at The Royal National Throat Nose Ear (RNTNE) for me to get my BAHA upgraded and sorted and I just ended up telling her how if she didn’t get anywhere with it to let me know as I may need to get a referral to audiology anyway and then told her everything .
Ann agreed that I did need to get up to the RNTNE ASAP on being told everything and seeing my audiogram .I explained to Ann that this was my intentions and explained about how long it has been since I last saw audiology and asked how I go about getting this sorted , in case she knew of a quicker way to get things moving , rather than me having to try forever to get hold of the doctors, then actually get an appointment, then wait for them to send the referral off, wait for the referral to be accepted and wait for an appointment to come through. All of which could and most likely would take months.
Ann was shocked and agreed with me how I had definitely slipped through the black hole as she put it and told me how I needed to get an urgent referral to see an audiologist at the hospital ,Ann told me that she will be up at the hospital on Monday 16th March and that she would try to speak to someone about it .
This kind of made all of yesterday’s appointment and the results feel real all over again and brought everything from the appointment back to me but honestly I was still OK and just felt relieved in some way that I had told Ann and that I had started getting the ball rolling to getting it all sorted out whatever the outcome may be whether this is a stronger hearing aid – although the only time it felt OK was before I had my BAHA and just made everything loud not clear or anything like I felt I got from the BAHA , whether it means a cochlear implant , another BAHA, or even possibly doing nothing at all as maybe my BAHA for my right will be able to be adjusted to support my left more at this moment in time I have no idea what is going on or what the outcome will be or could be but I know I am on the right path and doing all I can to find a solution ASAP.