Fitting a severe/profound sensorineural hearing loss is very different to working with the standard mild/moderate loss.
Patients such as these have usually worn hearing aids for many years, and are very familiar with the process of tests and seeing the audiologist. They know what does and doesn’t sound “right”, although like all of us, they can’t always tell in the clinic room - they need to go out into the world to test out their new settings. They are also typically advanced in age (although not always), which can lend additional issues such as cognitive decline or dementia.
Very tricky patients, and they are not usually aware that they are tricky compared to the average patient. Unfortunately they just think they have a bad audiologist, especially if they have a friend who wears aids, who is managing just fine.
Fortunately, this is an area where I can help, a lot. Experience is important, as is patience. The patient needs to have patience too, as it can be a longer process to get them hearing as well as possible.
Earlier in the Summer I met a chap who had recently been to see his aud in West Yorkshire. He had aids from them for a number of years, but had recently had another drop in his hearing. He was told that his aids (Phonak Lumity L90s with power receivers and closed domes) could not be improved any further. He was told his hearing was “pretty bad now”, by way of an explanation. £4,000 aids purchased a year prior, now he can’t hear at all and is essentially told there’s nothing we can do.
As a 90+ year old, it was important to stay with Frequency Compression, to match the strategy his brain had adapted to already. I tried Signia Pure Charge n Go, which are powerful enough for the severe loss and use this same type of tech. The computer’s standard fit is invariably not good enough for severe loss, giving murky, overcooked low frequencies and brash, artificial high frequencies which make speech sharp but still not clear enough.
His previous audiologist noted that they couldn’t give enough power because it caused feedback from the aids. This is possible, but I needed to get custom-made tips for his very bendy/narrow ear canals. The tips have a “lock” on them, which also functions as a handle to insert them. This was tricky for him to learn to insert, but once in the ears it reduced feedback, allowing me to give him the volume he needed. We learned how to insert in clinic, and with a follow up home visit two days later, so he could have a less stressful environment to practice in. After a week, he was doing a fantastic job putting them in, despite saying he “will never ever be able to do it”.
He has two areas on his hearing test which are “cochlear dead regions”. These areas, when you play a loud test tone, engage the parts of the cochlear next door to them. So instead of hearing a single piano key (a pure tone), you hear a chord. In a hearing test, hearing pure tones as something else needs to be flagged up to your audiologist. You may hear a chord, you may hear white noise/static. Whatever it is, if you can’t hear that single, pure tone, let them know. A dead region needs very careful amplification, because when the aids are amplifying speech, the additional frequencies will be heard along with the phoneme, which causes the speech to sound distorted. This phenomenon applies to those with audiograms showing severe, steeply sloping, sensorineural (inner ear/nerve) hearing loss. An “s” sound becomes a “tch”, for example, and “plaster” becomes platchr. Hence why you can’t follow speech very well if the aids are amplifying in those regions. It is better to use frequency-lowering technology or simply avoid amplifying them at all.
If you can’t hear a single, pure tone during your test, let the audiologist know. A dead region needs very careful amplification.
We’ve had five appointments so far, including the fitting appointment. The volume of the aids and other features affecting audibility have been tweaked by very small margins, left a week, revisited, tweaked again. When I say volume, I mean volume at 3 input volume levels (30, 60, 80 decibels) x by 15 frequencies. That’s 45 areas in each ear to potentially change. It’s difficult to get the precise points that are maximally beneficial; it’s sometimes necessary to overshoot, then come back up/down to where you were previously, to ensure you’re at the best place for the individual patient. If you ‘fit and run’, they might never experience the perfect levels for them. Because audiologists will have been “managing expectations”, they will not expect the new aids to be perfect, so they may not tell you if they are struggling.
The patient asked for the top level of technology, the most expensive aids I do. This is not always helpful, because the aids employ strategies such as finding the voices of those around you and switching constantly to “follow” each speaker. We tried a week with the aids’ microphones in this automatic switching position, and a week with them fixed straight ahead. The straight ahead version, when it’s busy/noisy, was more helpful for this man, and less confusing/distracting. It meant though, that he couldn’t hear people approaching from behind. A perfect solution was a program, which he could switch on when needed.
We’ve connected his aids directly to his mobile phone, too. Some audiologists will assume that a person over 80 doesn’t want a mobile phone connection. I have observed them saying things such as “if you wanted to, you could use these with your mobile, but it’s quite tricky. Do you want me to show you, or would it be a hassle for you?”. These sort of phrases invariably lead to a patient declining the option, and not using the phone. The audiologist doesn’t feel they’ve done anything wrong, because they offered. Bear in mind that with severe/profound loss the patient will have been struggling on the phone, and may have avoided calls for years. Patients need encouragement, they need to understand how much easier and clearer calls will be if the mobile streaming is used, so they are motivated to learn the procedure. I connect the mobile phone as default, unless I’m specifically asked not to, and constantly all my patients know how to do it. They may text me every now and again if they can’t remember how to reconnect, or their family may help them. Most do it themselves, regardless of their age. It can be disconnected in a few minutes if it’s too stressful for a patient, but this has only happened twice to me in four years of running my own business. The scores of other patients love the mobile connection, and look forward to family calls/video calls once more.
Severe/profound loss need a very tight fitting, preferably with a Receiver In Canal aid (RIC). These have a part that sits behind the ear and a wire going down to your ear canal. The receiver (speaker unit) sits inside the canal, while the microphones are above/behind the ears- ideally placed to collect sound. Often, I will need to advise the patient that an In The Canal (ITC) aid (or similar custom made aid where the whole unit sits in the bowl of your ear) is not best for their loss. Once they have tried a RIC they tend to be very happy with the performance, even if they were initially not keen. A RIC has a tip or dome that can be changed cheaply, rather than throwing the aids out when your requirements change, as can happen with custom aids. I have had new patients who came to me because their aids were useless - they had custom made vents (holes) in them, so when their hearing got worse the vent could not be altered and they had to buy new again. None of my patients, even with severe/profound loss, have had to replace aids within the four years I’ve been trading.
When a patient has very little hearing left, every small tweak has a big impact. It’s often best to make only one or two changes per appointment, because otherwise you can’t tell which change made the difference, be that negative or positive. You need to make comprehensive notes to refer back to. These things take time, so it’s easier for an audiologist to simply say “well your hearing is very bad now, so you can’t expect it to be perfect with the aids”. True, but do we know we’ve tried everything before you give up? Does the patient feel like a burden and doesn’t like to complain, yet they are struggling with the way you’ve set them up? In the NHS, there is no follow up appointment so no chance to check if improvements are possible.
Lengthy appointments, difficult decisions, intense rehabilitation and a willingness to change, trial, start again - these are all needed to get the patient hearing their best.
Here’s a full list of the additional issues facing severe/profound hearing aid fittings:
Very little natural hearing left, meaning soft, moderate and loud sounds all have to fit into a small area
Likely cochlear synaptopathy (hidden hearing loss) in addition to the obvious hearing loss (volume). Means the person will find it more difficult the parse speech in noise or echoey places.
Some frequencies beyond the level at which amplification is possible
Perfect fitting tip/mould required with either no venting or precise/careful/small venting to manage feedback without creating unpleasant occlusion feeling
Frequency lowering technology likely needed, requiring longer to adjust to hearing
Advanced age and associated poor: cognition/working memory /sight/dexterity likely to be comorbid conditions which affect rehab progress
Cochlear dead regions causing distortion of amplified sound, which is not always obvious or identified by the patient
Likely dissatisfaction with previous aids and/or audiologist, due to high time requirements not being met
Likely poor experiences with phone calls, rehab required to make best use of technology
Assistive listening devices likely to be needed, with additional training
I walked into my first audiology clinic in September 2014, and when I mark my 10th year this September, I can honestly say that I try everything I can think of before I say “that’s as good as I can get your hearing”. The phrase “it takes as long as it takes” is really apt here, but if the patient is happy to have more appointment time, I am happy to keep working on the problem.
“It takes as long as it takes”
So, if you have a severe hearing loss, you’ve spent a lot of money on hearing aids, but are still struggling to keep up with conversation, remember that you can ask for an adjustment. Done be afraid to ask, and make sure you keep notes to give the audiologist as much information as possible. Don’t just say, “they’re no better”, state when and how you are struggling. If you don’t have custom made tips on your aids, ask if they might help. Ask for a second opinion if needed.
If you paid £4,000 or £5,000 for your aids, a large chunk of that money is for your care, and you may need to ask for that care if it’s not offered.
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