As a deaf person, when I have to do hearing tests, I feel a bit like a three-legged horse trying to do dressage. As I enter the arena (ENT department), I know I am going to be terrible at all of it. I’m going to hear few of the beeps and only parts of words. When asked whether an adjustment to my aids gives me better sound, I’m really not sure. I say well I think it does, and I go away from the quiet room and the clear-speaking audiologist to find that sounds are too loud, or too quiet, or the wretched aids are whistling. It’s like the business of buying a pair of shoes that seem perfect when you try them in the shop but step outside and they rub, and you don’t want to put them on again. This kind of thing has been happening to me since getting my new aids in April, on repeat.
Returning to ENT for review a month after I got the aids, it was apparent that they weren’t giving me improved speech perception and I was put on the list for a cochlear implant. But in the next three months, I just couldn’t seem to get on with them at all. The new moulds felt too big, it seemed that I was hearing less than before, and sometimes the aids made awful whistling noises that I couldn’t bear, never mind anyone else! What’s more, when standing near me, others could hear their own voice echoing back.
I was grateful that I was able to return to the hospital for adjustments to be made but felt increasingly frustrated. I reached a tipping point a few days before a busy, sociable fortnight, realising that these long-awaited times with family and friends were going to be spoiled by my reduced ability to hear. I was really struggling to follow one-to-one conversation in a quiet place. What hope of managing in a more challenging environment? But then, some good things happened…
Audiologists are brilliant!
Well where would people like me be without them? I am deeply appreciative of their patience (must be necessary for the job) and expertise. But there were some extra things this time that turned things around for me.
Audiologist Kyla gave me her email and invited me to contact her about how I was finding the aids after adjustment. This enabled me to let her know that I wasn’t doing well and to be seen again quickly, this time by her colleague Mohammed who has additional expertise in severe-to-profound hearing loss.
Mohammed did several things that were an enormous help:
- Told me my ears were infected, enabling me to get treatment. This partly explained my worsened hearing in the previous days
- Skilfully and respectfully drew out my expertise in my hearing and brought to it his professional knowledge, so that between us we identified problems and possible solutions.
- Encouraged me to be brave! I had taken along my Roger pen and we spent some time checking how that was working for me, but he also prompted me to try using it (for the first time) to answer my phone when he called it from another room. On the rare occasions I answer a call, I usually run with the phone to someone else as I explain that I’m deaf, but I could just about manage to hear what Mohammed said.
- Reminded me that the brain needs time to adjust to new or reprogrammed aids. He felt that having new aids (and moulds) and a new programme, and then several adjustments in a fairly short period of time were not giving my brain a chance to adapt. His solution was to programme the aids to the same settings as my previous hearing aids and encouraged me to work with this for a while.
- Offered me continuity of care. He suggested it would be better if he saw me from now on, rather than me seeing someone different every time, and we both anticipate that this will give me the best possible outcomes.
Resolving the infection improved my hearing in time for me to enjoy those social events, and I am now much happier with my aids, not least because they aren’t making a noise!
Lessons for when I have my cochlear implant…
Otologist John Dornhoffer has written about his experience of having a cochlear implant, of which he says “ I feel that I have learned more from this 1 cochlear implant in my head than the 1000 plus devices I have implanted in others”. He says he had no idea how important the neuroplasticity of the brain was, and how powerful, when learning to hear with an implant. Much like my experiences with hearing aids, he talks about the difficulties, during programming appointments, of answering questions about whether a sound was too loud or too quiet, and that each adjustment caused a two-week set-back in his ability to recognise speech. He concluded that this was the length of time it took his brain to adjust, and that frequent changes to the programme were making things harder for him because his brain had to relearn each time. After six weeks of this, he asked his audiology team to programme every frequency at 30 dB as that is how the normal cochlear works – and he hasn’t had it adjusted from this in the four years since.
So final reflections for me are:
- It’s not just about the aids! Brains have work to do and take time to adjust
- This work is tiring. I need to allow for this, not overload my schedule and be kind to myself
- Patience and perseverance are key