To persevere or not to persevere?

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That’s the question.

And the answer is……I don’t know.  When do we persevere with something and when do we say “whoah, something not right here”?  I’ve written two previous posts on other aspects of this dilemma – I Give Up and Don’t Give Up (you can see I didn’t reach a conclusion then either) but this is specifically about hearing aids. More specifically, perhaps, about new hearing aids.

Persevering with new hearing aids is something everyone says we should do, and they are right.  They are difficult to get used to.  It is a shock to the poor old brain to suddenly get this STUFF coming through the new aids and to be told it is sound.  “No, it isn’t”, the brain says, “I remember sound and it wasn’t like that at all”.

“Well that’s all you are going to get”, says another part of the brain.

So the “ears” brain makes the best of it and gradually sorts the STUFF out so it slowly starts to sound, well, more like sound.  (People with good hearing seem constantly surprised when I tell them that wearing hearing aids is not like wearing glasses to correct sight – you don’t get back to 20:20 hearing – you “hear” more sound than you did before but it’s not how you remember it).

It can take the brain quite a while to adjust, hence the need to persevere in wearing your new hearing aids so that the brain gets a decent run at it.

I’ve mentioned before that I used to work in retirement housing and encountered many people who had hearing aids.  Unfortunately, they were often not in their ears.  They were in their bedside tables, or handbags, or cupboards because “they don’t help”.  I would chat to them about my own experiences and try to encourage them to have another go.  To be honest, I adapted quickly to my first hearing aid (twenty odd years ago) it was the advent of two aids (maybe three years later) that I found really hard.  Having one in both ears really flummoxed me.  Actually it was worse than that – I hated it.  My own voice sounded very strange and as if it was coming somehow from the centre of my head rather than in through my ears – rather as if I had a very bad head cold.  Other sounds were different too.  I remember one day trying to run a team meeting – not hearing my voice properly and not hearing their voices properly.  I got so frustrated I ripped the left (newest) aid out, sighed deeply, explained to people what was going on and coped with just the one ear in play.

Audiologists are right, though – you have to give it time.  After a couple of months of persevering (I did persevere, honestly) my brain got used to the double-entry situation and everything sounded normal again.  I’m sure learned PhDs are written on this subject of the brain’s accommodation, but I don’t understand the science.  I just know it works.  So – persevere……

BUT, sometimes perseverance doesn’t work.  Here’s another story.  About five years ago I needed new hearing aids.  My previous ones were about eight years old.  I was coping well with them, but my audiogram (hearing graph) was showing its usual continual deterioration and the aids were starting to fail just because of their age.  An audiologist fitted me with new, stronger ones.  The sound was immediately AWFUL but I was encouraged to give it time and, mindful of what had happened in the past, I was happy to do that.  Perhaps I should explain what awful meant.  It was really very loud, which isn’t necessarily a good thing (clarity is what you want, not volume).  Background noises (by which I mean anything that isn’t speech, speech being the thing I am trying to retain) boomed and roared.  The sound of people talking to me got lost amidst a deafening (excuse the pun) cacophony.  I went back to Audiology and the audiologist made some adjustments, but it was no better.  I should persevere for longer, he said.  He explained that my hearing loss was now so severe that these hearing aids were the absolute best that could be done and (he put it slightly more politely) I would just have to get used to it.

But I couldn’t, because it was dire.  I tried, I really did.  I felt low.  I’m not the sobbing sort but my eyes sometimes got wet.  Eventually, I went back to the hospital again.  I explained that I could understand speech better with the hearing aids I’d had before.  Surely something was wrong.  At the worst, could I please have the old type back?  I was seeing a different audiologist.  She went off to speak to a manager and then returned to offer me a new option, something I’d not been offered before.  These (Phonak Nathos SPW) were light years better (for me) and I have had them ever since.  My limited understanding of how they work is that some high pitched sounds (for which I am profoundly deaf – I can’t hear them no matter how strong the amplification) are reconfigured into lower pitched sounds (that I can hear) and my brain (hurrah for brains) manages to translate them into something intelligible.

The point is this, though, in this second case I was right to trust my instincts, stop persevering and start pressing for something better.

So perhaps that’s the only answer to the question (to persevere or not to persevere with new hearing aids).  Persevere for a respectable amount of time and then, if there’s no improvement, trust your instincts.  Maybe there IS something else that could be done.

As a postscript, telling this tale has made me ponder again the differences between NHS treatment and private treatment.  Years ago, the NHS referred me to the private sector.  I needed digital aids but, at that time, the NHS was not routinely providing them.  Because I was working I was able to make use of the Access to Work programme and they and my employer jointly funded two digital hearing aids (on an 80:20 split as I remember).  I stayed with the private sector audiologist until just before my retirement.  On the whole the service was identical and I am largely very happy with my return to the NHS, but the private audiologist had recourse to a much wider selection of hearing aids than a typical NHS Trust.  When I needed an upgrade she would encourage me to test out more than one model until I found the one I was best suited to.  That’s what the NHS lacks, in my experience, customer choice.  What have YOU found?

 

 

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12 thoughts on “To persevere or not to persevere?

  1. I remember when I got my first hearing aid back in February 2014 just what a shock it was to suddenly have this device plant what seemed like a lot of loud noise into my left ear.

    I have what would be described as a mild to moderate hearing loss and at the time I was given a Siemens Impact Pro L hearing aid with an “open-ear” fitting.

    Actually wearing it in the first few months was a shock and I found difficulty in picking out what I wanted to hear from the cacophony around me.

    I went back to the audiology department at first for my follow up appointment after my fitting and told them how I found it and I was told, just like so many others “you have to give it time”.

    I did. I went back again a couple of months later and got the aid tweaked.

    They were right and things settled down so much so that after about 9 months with my aid I began to wonder if I needed an aid for my then unaided right ear.

    At my annual ENT appointment at the beginning of 2015 I was talking through my hearing test results with the ENT doctor and asked about a second aid.

    I got one within 4 weeks. Hooray! Stereo! Life or at least the sound of life had balance.

    Last year they told me my Siemens aids were out of date so I asked about new ones. I also talked to the audiologist about the difference between the open-ear fittings I had at the time and the more conventional ear mould fittings.

    Just before Christmas last year I was fitted with a pair of Oticon Synergy aids with ear moulds. The audiologist fitting me told me he thought I’d get better quality sound with ear moulds rather than the open ear style.

    He was right. I now hear better than I’ve done in years.

    That’s another thing. Why do we wait so long before we seek help for our hearing? Seems daft when the help is there if we ask for it.

    Best wishes

    Ian

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    1. Hello Ian. An interesting sequence of events and it sounds as if you have a very responsive audiology department. Where I am annual appointments are unheard of and I have friends who ask for a repeat hearing test (being sure their hearing is deteriorating) and are told that it is not “long enough” since their last hearing test 2 years ago. Perseverence, persistence and assertiveness rule – but not everyone can keep that up. You are right though, why DO we wait so long before seeking help.
      Best wishes. Vera.

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      1. Hi Vera

        I’m in West Yorkshire and my local audiology department at Airedale are brilliant. when I had my impressions taken for my moulds the audiologist asked if I’d noticed any change in my hearing as my last test was done in January 2016 and this was November last year.

        I think it just depends on the individual audio units around the country and is maybe linked to budgets, staffing levels, patient numbers and so on.

        All the important stuff when the most important issue is the “end user”, the patient and their needs.

        I was horrified with what happened in North Staffordshire last year when a decision was taken to carte blanche withdraw hearing aid provision to patients with mild and moderate hearing loss.

        Ian

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  2. I like the idea of being referred to a senior audiologist. I go to a private company for my hearing aids (no name, no pack drill!) and when I asked if I could see a senior audiologist (the girls I see are all quite young) I was told that they are all senior audiologists. As Vera mentioned it is not on being asked when sitting in a soundproof room if the changed settings are satisfactory. I have recently bought a new set of hearing aids which I was told were state of the art, but can find no appreciable difference between them and previous aids. I am convinced it is all to do with the settings but have been told that there is not much more can be done fore me. I have persevered but feel I am now running out of patience. Maybe back to the good old NHS?

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  3. Hello Vera. Thank you for your reply. I read Heather’s comment, and am very impressed at the sound of her audiologist! As I am new to all this, any help or suggestions are greatly received! It makes so much sense to be able to have a wander around with the new aids! Even just a quick walk outside, would give you an idea of how they feel and how the pick up sounds. My audiologist has been very understanding so far (they even got someone in to translate for me, as I have been trying to do everything in Spanish!) So, yes, next time i visit my audiologist, i will ask if i can have a little walk around to experience the aids in a more ‘normal’ environment, instead of just her small quiet office. Thanks again for the advice. i really appreciate it. Take care Vera! Carly

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  4. When I read your blogs Vera they are like a mirror of my own experiences! So lovely to know you’re not the only one!
    I feel a sense of doom at the mention of new hearing aids. Each time I’m told they’re better but I have never found that when I’m given them. They always seem to amplify to an uncomfortable level and something like stirring your tea brings tears to your eyes! The level of “noise” -I can’t bring myself to describe it as sound- blots out any clarity. Hearing speech is always a huge problem for me anyway, that is the range I’ve lost most.
    As for perseverance, well I’ve made repeated trips to audiology to be told to carry on. I wear my aids all the time and never relent to the comfort of my old aids, however tempting so feel I always give them a good “go” however often they make adjustments and as soon as you go out into the real world you realise it’s no improvement or maybe even worse. Also you tend to see different audiologists which doesn’t help. After my last experiences I was eventually referred on to a senior specialist audiologist (who’s also a hearing aid user) and instead of just programming as per my hearing test she used her vast knowledge and experiences to tweak things. She booked me a long slot, told me to bring a friend and sent us off to the cafe and to walk around to test the adjustments until I felt happier.
    In answer to your question I’m a firm believer in trusting your gut instinct. Each set of aids will be different but if, following a couple of weeks of perseverance you’re struggling go back. If it’s really intolerable I think we know ourselves that no amount of time will make them right even if you get used to the misery of them, and also insist on the most experienced members of the team and their expertise.

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    1. Hello Heather. I’m incredibly impressed about your referral to a senior audiologist/specialist and what a difference it made. The things you mention (taking a friend, going to the cafe etc) are such obvious things to do but they don’t happen. Being asked to decide if adjustments to the programme are better after just a few minutes sitting in the audiologist’s office is not on, really, is it? But it’s what happens.
      All best wishes

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  5. Hi Vera. Nice to see you here in the blogging world. How are you?
    Thank you for sharing your post. I am struggling with my CROS hearing aids. I’ve had them a month and experiencing exactly what you wrote about – awfully loud sounds that I can’t make sense of. Also the distortion is affecting my good ear to hear properly too…not long till my next audiologist appointment, and I will tell them all about this!! As always, it’s so interesting to read about your experiences. Take care 🙂 Carly

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    1. Hi Carly. Before you go back to audiology read the comment from Heather McLeod for another take on the situation. Her story about making sure there is time at the appointment to wander about (outside the audiologist’s office!) and try out the aid in a number of different environments is a really valuable one. Take care of yourself and good luck. Vera

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      1. Hi Vera. I nominated you for the One Lovely Blog Award! I love reading your blog…Here is the link https://myhearinglossstory.wordpress.com/2017/03/17/nomination-for-one-lovely-blog-awardthank-you/?preview=true Take care. Carly

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