Royal National ENT 05/01/23

Firstly, happy New Year .. How are we in 2023 already?! .

Today, finally, I had my long-awaited appointment with my consultant, Mr Manjaly, at the Royal National ENT hospital in London.  (No fault of his own that the appointment is long awaited)

I should have originally  seen him in November, but thanks to Transport for London (TFL), that wasn’t possible as they decided to strike.There were absolutely no train or tube services running ..

I assumed I would then have to wait until January, but thankfully, when I phoned the hospital and explained they were able to fit me in early December. which was great. However. A few days before the appointment , I received a message on MyChart telling me the appointment had been  cancelled.I’m not sure why ,all I know is that the clinic had been cancelled.

It’s been fun, and games in getting to today.  I still didn’t even think I would get here today .kind of pinching myself that I have as again TFL have been striking. Today is the only day this week where there haven’t been any strikes – but of course, it has impacted and caused  slow running services and delays.

Knowing this, I set off earlier than usual .awake,washed ,dressed ,hair, makeup, etc. done all before 7am. Ready to leave my parents where I stayed overnight.

There was a lot of traffic getting out of my hometown, so that was great. Got past that, then, of course, we hit regular work/commuter traffic and eventually London traffic.

I didn’t arrive at Newbury Park Station until 8.50am. Typically, there were no parking spots anywhere, drove around for 10 minutes .. nothing.

I decided it best to jump out my dad’s car, not knowing if we would make it if we drove into London or if there was anywhere else we could park as every turning we had passed had been residential roads.

I ran for the tube .I  had a 6 minute wait for the tube due to delays on the service. I know it’s not much of a delay, but it is when you’re already  rushing and are now cutting it close time wise.

The tube arrived, and I hastily jumped on and headed off into London. The journey seemed to be going OK. According to Google Maps, I would be at the hospital by 9.33 am ,3 minutes past my appointment time.Not ideal, but it’s not awfully late either.

A few stops in the tube stops.From what I can vaguely pick up from everyone’s groans ( I couldn’t make out what was said on the tannoy) The tube had unexpectedly stopped and is now waiting at a station for some reason – causing further delay.. Google map routes updates and is telling me I’ll now arrive at 9.39am .That’s if we get moving soon.

I text dad, who had now managed to park the car at Newbury Park ,asking him to phone the hospital and let them know I’m on my way, the tube has been delayed and now unexpectedly stopped. He phones me back a few minutes later.. uh oh .. here we go. I think the worst . They can’t see me any later, can they?!

Thankfully, the hospital is totally understanding and absolutely fine about it. They say they have looked at my appointment and spoken to Mr Manjaly .They can still see me and will be ready ,waiting for me as soon as I arrive.

I breathed out a huge sigh of relief that didn’t realise I’d been holding. Push the tears back down. It’s fine.It’s OK. It is happening.

After a few more unexpected delays and stops, the tube announces we won’t be stopping at Chancery Lane due to staff shortages. Great, that’s perfect. This could work in my favour . I’m hoping this means we will be able to catch up with time a little bit then as I need the following stop. – Tottenham Court Road.

The tube arrived at the platform in Tottenham Court Road Station at 9.35am . I know I literally just have to go one stop on the Northern line to Goodge Street and then walk a two minute walk, and I’ll be there. I dash as fast as I can for the platform to catch my connecting tube.

Typically, the tube has just pulled away as I get to the platform. I now have a 5 minute wait. Brilliant.I’m now 10 minutes late.. Oh N.o. .think again. Another delay appears on the board saying it’s another couple of minutes away. Eventually, the tube pulls in at 9.45am.

Once the tube has pulled in, we sit there for a minute or two before the tube departs the station. The tube arrives at Goodge Street, I bolt off and head for the lift to the exit.

I then begin dashing up the road to the hospital .

Of course, there had to be another hitch. My hearing aid. It has decided to go totally unresponsive.Literally no sound at all. Nothing. I’m in complete silence.

I debate what to do . Do I leave it and just keep dashing, or do I stop and try to sort it?

I leave it and carry on ,I then decide no, I have to fix this, I feel too off balance, and I’m feeling really anxious. Panicking.

I know it will delay me further ,but I have to sort it out. I won’t be able to hear the receptionist once I arrive( not that I really can anyway, but still) I know the battery hasn’t died as it usually alerts me.I check it anyway, it hasn’t. I whip it off quickly, open the battery compartment, and close it again ( the good old turn it off and on method) .I wait for the start-up tone. Nothing. Fantastic.

I don’t have time to try a replacement battery. I’m literally stood in the middle of the street, too. I prod it and poke it. Nothing. Eventually, after a few, turn it off and on attempts and giving it a good rub it wakes up and comes back to life. Phew.

I’m now haring up the road wondering what had happened. I guess it’s the change in pressure or something from the tube,however I can’t stop myself worrying that this one is also faulty ( you may remember my original one in July was faulty and only survived a week).

Finally I make it to the hospital. I arrive and go into reception. Typically, there is a queue of about 4 to 5 people waiting. There is only one receptionist who is dealing with everyone. Excellent.

While in the queue waiting a security guard has approached me and is trying to have a conversation with me. I have no idea what he is saying. He then starts gesturing at his face . I then realise in my rush to get to the hospital I haven’t put my mask on.( yes I’m aware COVID restrictions are over but hospital policy is still masks are mandatory)

I quickly grab my mask out of my bag.crisis averted. I’m then called forward to reception and have the usual struggle of trying to check in. I’m told my appointment isn’t on the system. I expain that I was late due to TFL strikes, but the team held my appointment, and I had called ahead. They then find me on the system. Turns out they had been looking at the wrong surname, Hartbey, not Harvey. I’m told to go to level 1 .. a little strange as typically I go to level 5, which is adult ENT and audiology. However, they do have consultant rooms on level 1, so I guess there’s just been a change.

I dash for the lifts, and a very kind man (I think he is a member of staff) upon seeing me dashing for the lift holds the doors. I get in, and the doors are literally about to shut when I see two reception staff waving and shouting towards the lifts.

The security guard has now begun waving in my direction, and everyone nearby has stopped and is staring at the lift I’ve got in. The guy next to me turns and says, ” I think they’re looking for you.”

Excellent. I jump back out of the lift, confused at what’s going on . I head back towards the receptionist, who I have a gut-wrenching feeling is about to tell me my appointment has been cancelled after all,perhaps the team can’t hold my appointment any longer.

No… All the hullabaloo was simply to tell me she had given me the wrong floor level. I needed to go to floor 5.

I dash back to the lifts, expecting to have to wait for another one. To find the same kind man has yet again held the doors and is awaiting my return.

I get to floor 5 and check in at reception ( again, I struggle to hear and understand them, and equally, they struggle to find my appointment) . They begin asking if my mobile number and GP practise are still the same before telling me to take a seat in zone A.

Knowing my reputation with being told the wrong waiting zones from previous appointments and everything else today,I again check and double-check again that she has said zone A.

Yes, definitely zone A. I’ve had it confirmed at least 3 times now.

I head to zone A . Knowing the team has said Mr Manjaly will be ready waiting for me. I expect I will barely get my bottom in a seat before being called through. I don’t dare take out my book

I’m bursting for the toilet, but I know I don’t realistically have time to go,nor do I want to hold Mr Manjaly up any further.

5 minutes or so later, I see Mr Manjaly appear from a door in …. yes, you guessed it , it’s not zone A… zone B! I assume he’s calling the patient that should be due in to see him now ,so I remain seated. I then realise that after a minute or so, he is still standing there .

Having not heard him call anybody I decide what’s the harm in approaching, worse that can happen is he will tell me its not my turn and I’ll now be in the correct zone and nearer to where he will undoubtedly reappear from when it is my turn. In the best case scenario, it is me he’s waiting for.

I approach . Mr Manjaly is talking to another patient or someone who has accompanied a patient ,so maybe it’s not me after all.

Turns out it is me. Mr Manjaly looks torn as to whether to continue helping the lady or me. I’m quite happy to wait .Mr Manjaly tells me we are in room 20 and he will just be a minute. That’s absolutely fine, not a problem at all. As I reach the door, I realise Mr Manjaly is now behind me ,as he tells me the whole team is in the appointment today.

I wasn’t expecting the whole team to be in the appointment. It doesn’t bother me though , I then think.. who is the whole team? I don’t think I know the whole team. Unless of course he means the two audiologists I’ve seen and maybe another consultant or registrar to give a different opinion or option.

I walk in and there are two other medical professionals already in the room. I don’t recognise either of them.

I take a seat on one of the two free chairs next to the computer desk where one of the other medical professionals is sitting .Mr Manjaly takes a seat  opposite me , there’s a treatment bed between us. Mr. Manjaly then tells me the team will introduce themselves to me and asks them to do so.

The first to introduce themselves is the lady sitting next to me. I don’t catch her name but she is a registrar. Next to her and the entrance door is the second medical professional who introduces himself as Liam, junior doctor.

Mr Manjaly then explains to me and the team that the appointment today is for the outcome of my BAHA and explains how at my last appointment I was fitted with a hearing aid and that the aim of this is that it will boost my hearing and help to level things out

Mr Manjaly then asks how I’ve been getting on . I’m honest and say it has been a bit of a struggle ,explaining how I’m on my second hearing aid as the first was faulty,that I still need to wear it on full volume and how I’m not too sure if it’s making much difference.

Mr Manjaly asks if I know what I would like to do going forward . I say to him, besides having the BAHA removed,honestly, I don’t know. He asks me if I understand what options we have. I explain that I don’t, Nobody has currently told me what my options are.

(When I saw Mr. Manjaly, in July, he had told me audiology would tell me what all my options were based on my audiograms and testings, etc. That didn’t happen.. I mean, the testings, etc, happened, but no options were ever mentioned, and they didn’t seem too sure themselves as to what they may be)

Mr. Manjaly begins explaining how despite it sounding like we had lots of different options in July.My case was discussed in the case review meeting, It has been agreed. I only have two options.. I sit thinking it will be a toss-up  between two different devices/ systems. Mr Manjaly proceeds to tell me what my options are:

1) we remove the BAHA. We let it heal, and we do nothing further. (Essentially, the do nothing option)

2) we remove the BAHA, and we let it heal and then place the Cochlear Osia. (Magnetic BAHA)

My instinct is. We do the Osia..

However, it wouldn’t be me without a but, however, or some kind of issue or hiccup.. oh no ,you forget I don’t do things the easy or straightforward way . I mean, where’s the fun in that?!.

Mr Manjaly explains how he can’t lie he is, and I quote, “very anxious” about doing the Osia. I’m listening. Really listening.

He explains how, although it is an option, he personally is very anxious and doesn’t know if it’s a good idea.

He’s anxious that I’ll have the exact same issues with the Osia as I am having now with the abutment.

Essentially the Osia is the same as the BAHA (they work on the same principle/ concept, same brand etc) Only difference is one is an abutment and the other is a magnet underneath the skin , he worries  that as I’m already in pain and we don’t know what is causing it. I could have the same problems  with the Osia. However, he tells me, if I want to do the Osia implant, he will do it and is happy to be the one to do it.

I can’t lie. My heart sinks. Don’t get me wrong, I totally respect Mr. Manjaly, for being honest and telling me. I would rather he did . It actually made me respect and trust in him more for it, he could so easily have not expressed these concerns and carried on, many others would.

but equally I can’t lie, it hurts. I don’t know how to feel about it. I wasn’t expecting this.

Don’t get me wrong it’s not as though I’ve had my head in the clouds and hadn’t anticipated or thought about complications or worried about the what ifs. However, I think hearing it from a doctor,consultant,surgeon, or anyone professional or medical truly brings the reality of it home.

It’s incredibly hard knowing  potentially this is the end of the line, and nothing more can be done. I’m not sure how I feel about that.  I don’t know if I can fully get my head around this and the reality of what that would mean.

Mr. Manjaly asks my thoughts on this, and I can barely answer .my head is swimming, and I’m still in shock to be honest. I just hadn’t expected that in anyway shape or form. I take a moment to try to process everything and get my head around what’s just been said so that I am able to make sense of everything and talk it all through rationally ,calmly and in an informative manner with Mr Manjaly and the team.

Before I realise, my instant reaction is blurted out .. a bit too loudly, much louder than I or anyone else in the room was expecting.

“Well, I think we have to try.”I think we have to try the magnet and just try” comes my reply in a completely abrupt loud burble ( it wasn’t intended like this in the slightest, I didnt even know anything was going to come out my mouth, it just happened) . Mr Manjaly looks as shell-shocked as I feel. Everyone’s silent. I apologise and feel mortified. One of those I just want the ground to swallow me moments..

I think it’s safe to say that I shocked both myself and Mr Manjaly and possibly the other two staff in the room who are just staring speechless… well done, Bethan… I’ve officially lost composure.

After what feels like a lifetime but in reality is probably no more than a minute or two, Mr Manjaly says “ok” and puts his hand to his mouth as if in thought and sits back. Everyone remains silent .

After a few minutes of nobody saying anything ,feeling awkward and feeling like someone has to say something, I find my words and say, “I don’t know.” “I really don’t know. “

Again, it’s not quite what I expected to say, but the reality is I don’t know what to do. I don’t know what I’m thinking, feeling ,how to process everything that’s been said, or how to get it together into something I can voice without making a fool of myself,again.

Mr Manjaly tells me it’s OK, and we all sit in silence again for what feels like a few minutes – I can feel tears rising, but I fight them back ,somehow. I don’t quite know how I stop them from spilling over. I think he senses this and the emotions in the room.

I tell Mr Manjaly a little more composed ,I had been concerned about infection, issues with doing anything further and how I just don’t know what to do.

I feel Mr. Manjaly telling me this information has brought it to life and made it feel real. very real. I’m nervous , im confused. Whichever way I decide, I’m faced with uncertainty and unknown. I can’t lie. I’m scared. ( I don’t say about this, though)

Nothing I wanted to say came out how I wanted or intended. Instead, I feel so confused and conflicted that I feel I can’t process everything. I just need to get out. I need air. I just want to get up, grab my stuff, and run out of the room. What is wrong with me?! I’ve never felt like this before.

Mr Manjaly replies “OK do you have any questions about Osia, or did you want to leave them for next time?” I decide to wait until next time.

I can’t even process things as they are at the moment . I already have a list of questions from our last appointment, or at least from between then to now ,that are swimming about. I can’t even face tackling these questions right now ,let alone the information today. it makes more sense to me for us to focus on the here and now.

OK, says Mr Manjaly, we will leave any discussions until after you have healed from BAHA removal. I feel deflated and disappointed in myself. Why can’t I just voice everything? Why can’t I even ask the questions I already had? At least some of the enormity and weight may be lifted, right? I’m so frustrated with myself, I didn’t expect to feel this way at all.

Mr Manjaly explains to the room  that we agreed last time to remove my BAHA abutment and how we can now book that in, as all testing and scans have been completed.

Mr Manjaly asks  his registrar to have a look for a date (she’s sitting at the computer, so it makes sense) . Mr Manjaly asks if im happy to do it under a local anaesthetic, as wait times will be quicker. Well, everything will be quicker, really. I agree. Im not bothered how it comes out ,it just needs to come out.

I sit unbeknown, holding my breath, waiting to be told of a date and anticipating how long the wait may be. I sit thinking, “Please turn round and say I’ve got availability now, this afternoon or tomorrow or something. ”  ” Equally, I know this isn’t realistic, Though it would be nice

March?  she asks  Mr Manjaly and begins showing him something on the computer.  After a brief discussion between them both, it is agreed between them and confirmed between all of us in the room and provisionally booked for 17th March. 10 weeks tomorrow!

Wow I’m absolutely shocked and stunned. Never did I expect it to be this quick. I thought at least May,June time. 

Mr Manjaly explains how this will be done under a local anaesthetic so I will be awake throughout the operation, how he doesn’t think we will need to do it in theatre so we can do it in an outpatient treatment room. Great. This all sounds perfect. I’m told I will receive a letter in the post with all the details of everything.

I can’t lie. I’m a little nervous as I’ve never had an operation under a local anaesthetic, but equally, I know I’ll be absolutely fine and in safe hands .it’s more the not knowing whereas with a general anaesthetic I’ve walked that field many a time I know the routine and protocols like the back of my hand.

I thank Mr Manjaly and the team and head out of the room, and head off for home. I can’t believe how short the wait is ,I’m so excited I can barely contain myself. Definitely, a lot of mixed emotions bit finally if it is happening. Now for the next hurdle of the journey (waiting and getting to the date) .let’s get to that surgery date and do this.

Do You Work?

One question as a single lone parent( meaning a parent who isn’t in a relationship and has no involvement from the other parent) that I absolutely hate is .”Do you work?” “What do you do for work” any formation of this question.

The correct response that is sought after is meaning in terms of paid work ,a simple yes and explanation of your job role or sector ,or a simple no suffices.

In terms of what is sought after then the correct response for me is no,because I don’t earn any money simple as that. I often then feel this leads to judgement, more prodding and poking questions or a silent air awaiting you to fill it and explain. Like it’s frowned upon to not be in employment.

I often feel judged once I answer no,purely because I’m young, single and a mother. People’s minds then begin racing to conclusions…well she’s a young single mum she must be stupid ,she must be scrounging off the council and government, she must be on benefits, in council housing,can’t look after herself or a child and so forth.

Yes I am young (27) i don’t feel quite so young these days,I would say I feel more mid to late 30s.

Yes I am very much single and happily so.It is what’s best for myself and my child.

Yes I am a mother and proud to be.

No I’m not stupid ,no my pregnancy wasn’t planned but I’m not stupid.

Yes I am on benefits

Yes I do live in a council flat and get help from the council and government

Yes I do rely on food banks and my family to provide me with food to feed myself and my little one. ( I would usually be ashamed to admit this but I’ve decided there is no shame in this whatsoever)

That said I don’t scrounge i make what I get in benefits work and last the best it can. Yes I can take care of myself and my little one. I have cared for my little one since the moment my pregnancy test was positive and that will never change. My little one is happy,healthy, clean ,bathed ,has a belly full of food ,clean clothes and a roof over her head and is loved immeasurably. She is the happiest, funniest, bubbliest, cheekiest most sociable, confident independent little girl I know.

The response I want to give is one that doesn’t come from stigma ,shame or embrassment. I may not work in the sense of earning money . But yes ,I do work.

What can I possibly mean? I’ve gone barking mad! I work in the sense that I am a mother , a mothers work is never done. My day starts when I am awoken by my daughter crying and shouting “up” “mummy up” and I don’t have a set finish time.

During waking hours my role is to ensure she is fed,clothed, washed ,clean , cared for – essentially you’re typical carer job sector role.

Over the 18 months of her life I’ve taught her to roll, sit up unaided, crawl,walk ,talk , how to eat solid food, how to drink from a cup, how to get on and off the sofa safely, boundaries, taught her words,colours, numbers, how to interact and play with others,right from wrong,about the world around her.

Whether this be through books, expirence and exploring such as through baby classes where she meets other children and has to listen,share and interact with others .or from going out and about in the community to various places such as the zoo, farms, duck pond,shops and so on. Essentially this is your education sector such a teacher.

I prepare her breakfast, lunch ,snacks and cook her dinner. I make her drinks throughout the day on demand and make her a bottle each evening before she goes to bed- there’s your caterer ,chef and waitress right there.

I drive her to further afield places that we cannot access by walking (we walk everywhere where possible to do so) such as the zoo, farms,to visit friends , to baby classes that are a little far out of walking distance . I’m a personal chauffeur and taxi driver.

When she’s poorly whether that’s day or night I’m at her beck and call ,with no respite or switching over I’m there to put a plaster on her knee when she falls, give her medication when needed ,take her temperature ,soothe her ailments – health care sector and nurse role.

I ensure she has activities to do whether that’s indoors or outdoors ensuring she has plenty of toys to play with that are age,stage and ability appropriate but equally challenging her to grow ,learn and develop further.Equally keeping her happy and smiling. Some could say I’m a circus performer ,or children’s entertainer at times.

I ensure she has a book case well stocked with stories and books that we can snuggle down and read together but equally she’s still learning so here again comes the teacher role as well as librarian ,possibly even your English literature teacher too .

Being deaf adds another layer to my parenting as I therfore have to make my daughter aware that I cannot always hear her,I don’t always know what she is trying to tell me . I show her adaption, inclusion ,equality but equally diversity .

It’s OK to be different. I teach her to communicate using British Sign Language (BSL) not only to aide her communication with me and my understanding of her but to break down frustration when she cannot verbally communicate what it is she wants or needs, equally to be able to be adaptable to others who may communicate differently too. I’m her sign language tutor (well, partially alongside her actual teacher Nikki)

I’m her personal assistant, and the receptionist roled into one booking and ensuring she arrives at her appointments and social activities.

I’m her advocate and her voice when she cannot advocate for herself or use her own voice.

I’m her comfort,her safe space,her home where she grew for 9 months and still aged 20 months perfers to nap on me during the day than to be alone in her cot. I’m the one on hand any time of day or night to give her reassurance, a kiss ,a cuddle whatever it may be . It’s me. Always me.

My day may start at 7.30 am one day and 3am thd next and may day may not end until 11pm some days, but there’s no telling whether I will be up 1 hour later, 4 hours later, or 8 hours later. There is no set start or end time it’s very much hit and miss. No other job would your boss be waking you expecting you to report for duty right that second even if you only finished 5 minutes ago . Or expecting you to work before you’ve barely opened your own eyes.

Once my daughter is in bed my work still hasn’t finished there’s washing up to be done, dusting to do ,hoovering to do, washing to put on, washing to put away, tumble drying to do and often that also needs emptying from the previous load. The bathroom needs cleaning ,the kitchen needs cleaning , mirrors to clean,beds to change, floors to mop ,changing bags to restock, shopping to do,cupboards and draws to replenish. That’s without getting myself showered, fed ,watered and general personal care or anything else thrown in the mix

There’s always something to be done or needing doing.

So yes .Yes I work.

Hearing Aid Diary Update October 2022

Back in July I was given a hearing aid for my left ear,due to declining hearing and the fact my original one I was given when I was 16 broke a number of years ago and my consultant refused to sort out chasing up or making a new referral to audiology telling me a whole range of things including

• I didn’t need it
• My BAHA (right side)would communicate to my left cochlear ,so the hearing aid wasn’t necessary or needed.
• Everything on paper is fine (hearing test results from 2011 I would’ve been 16 so a good number of years previous)
• You can hear me well enough with just your BAHA
• To learn to adapt and just get used to it (it being not having a hearing aid and just BAHA for opposite side)
• There’s nothing I can do
• Audiology will contact you ( I had explained to him numerous times they hadn’t seen me since I was 16 for a hearing test ,and how they very quickly fitted my BAHA at 18)
• Your on the list..what list ?where? How long is the list? (I mean were now in 2022 and I only got my appointments this year because I complained to the hospital about their lack of care.. the excuse “we must have missed you”

I was also given a BAHA despite part of the issue being continuous infections, swelling and pain (plus a BAHA way out of its warranty and lifespan)

I stated how I would keep a diary of how everything has been going as I advenuture back into a world of sound again after years of being deprived of it. That said I’ve been pretty rubbish with doing so I think I did one maybe two weekly diary type blogs and stopped 🙊🙈

Months later here I am ! I can’t lie it’s been a journey ,I don’t even really know where to begin.. yes I guess you could say that good..

I’ll start with the BAHA because that’s a pretty quick one. Going back to the beginning for years I’ve had nothing but issues with my right BAHA with constant infections,pain and skin overgrowth. I eventually after a long battle had revision surgery in january 2020 ,which wasn’t successful. Ever since I’ve been left with pain,headaches and sensitivity daily .knowing all this and the initial appointment in July where I explained all this and how I couldn’t even get my BAHA on they decided to send me home with the latest model the BAHA 6 max .

safe to say I didn’t get on well with it whatsoever. Don’t get me wrong I tried but I couldn’t tolerate it on for more than a matter of minutes before the pain was too much and I just had this feeling of needing to rip it off an launch if (I of course didn’t do the latter but did remove it sharpish) I also found the sound was so much more powerful and unbearable it was so overwhelming but not in a good way the only way I could tolerate the sound was virtually on mute ,so again pretty pointless because I then couldn’t hear anything,so completely defeated the objective of it

I tried adjusting the volume level of my left hearing aid abd BAHA to find the perfect balance and also on its own but it was just too much ,but equally not enough on its own as I then felt unbalanced and as though my left was straining more than ever to keep up.

The BAHA journey hasn’t gone any further and it was swiftly returned six weeks later. I’m still without sound to the right and adamant the abutment has to go.

Hearing aid wise (left ear) has been eventful and a rollercoaster too. I can’t lie I just assumed once it was tuned to my hearing needs I would be off and all would be great ,unfortunately that’s not been the case. After the initial appointment where I received it all seemed OK. I left the hospital got to the top of the road and it was as though the hearing aid was switched off.

I checked it was all turned on and working correctly it was. I increased the volume by 1 no difference, 2 no difference ,3 no difference right up until I was on the maximum volume which then sounded a bit better ,probably the equivalent of the base setting. T

By the next morning I found myself reaching for the volume slider once again turning it to full volume and feeling little to no difference, I fact needing it louder still.

After about a week it stopped working and I blamed my daughter ,thinking she must have got hold of it and tampered with it. For around a week it sat in an airlocked container of rice..occasionally it would work for a few seconds to a minute before cutting out. I was again without sound.

At the 6 week follow up I reported all this and then took the aid appart to realise it must be faulty and issued another one which they then tuned and set up to the levels my previous one was. I hoped this would be problem solved. Unfortunately not, it needed turning up a further 6 notches even then it was only a slight difference in sound quality.

Nothing had changed I was still using the hearing aid on full volume and needing further sound still. Exactly 3 weeks later I returned to the hospital for my CT and MRI scans ,whilst there I popped up to audiology to speak to an audiologist to get the volume further increased but was told it wasn’t possible.

Things haven’t changed as I haven’t had another appointment yet. My hearing aid is still being worn on the highest volume and I still feel it needs increasing further. Don’t get me wrong sometimes I get on absolutely fine with it on volume 4 but the majority of the time thats not the case. I also find the ear piece/mould is forever popping out and needing to be pushed back in again. Its frustrating but equally it’s not all bad because I know I’ll get there.