A cochlear implant programming problem

47015865 - opposite adjectives noisy and quiet illustrationMaybe problem is too strong a word.  Hitch maybe?  Glitch perhaps???

In the spirit of full transparency it is time to report on a glitch.

In late March I had a programming problem.  What goes on at programming (or mapping) sessions at the Implant Centre is that an audiologist first tests your range of hearing for each electrode (the quietest sound you can hear at that frequency and the loudest that is comfortable).

Testing for the quietest sound is much like any other hearing test.  You are given a buzzer which you press when you detect the tiniest, tiniest glimmer of a sound, somehow distinguishing it from the tinnitus.  You know the routine….feverish concentration, furrowed brow……..

Testing for the loudest is novel. The audiologist plays sounds at a number of frequencies (corresponding to the electrodes in the implant), starting quietly and then gradually getting louder.  You signal when the sound gets too loud for comfort.  Hand waving is fine but wincing also works.

Based on these results, the audiologist determines the amount of electrical stimulation each electrode should deliver to the auditory nerve.  What the brain can tolerate, and translate into recognisable sounds, changes quite rapidly in the first weeks after switch-on, and early audiologist appointments are very frequent.  After a couple of months things level off and the necessary adjustments are subtle.

At all the previous programming sessions I’d not really noticed much difference before-and-after. When I got home I could perhaps tell that some environmental sounds were louder than they had been before but it was all pretty seamless.  In March, though, I had a session where things immediately sounded very odd indeed – echoing voices were the first peculiarity.  I told the audiologist what was happening but she encouraged me to persevere.  The echo would go away, she said, once my brain got used to the new stimulations. I agreed readily enough.  We’ve probably all been in a similar situation with hearing aids, where adjustments immediately sound terrible but after a few days are fine.  In addition to that, I’d read lots of messages on online forums for implant users where people reported initially hating a programme then coming to love it once the brain adjusted.  So I set off for home.

I walked to the car park, got in the car, switched on the ignition….WHOAH….the engine noise was deafening. Listening to the car radio on the way home was out of the question and I arrived back at the house a trifle alarmed.

The audiologist was right in that the echo effect disappeared after about a day but other things were very wrong.

Nigel said I wasn’t hearing him as well as before (which I knew, but I was hoping he wouldn’t notice).  A couple of times he caught me out guessing (wrongly) what he had said.  I’d not really heard him and guessed instead of coming clean, which I’d not done since soon after switch-on.  I felt like I was returning to the bad old days.

The car engine noise didn’t get any quieter.  Indeed, I became half convinced that the exhaust had gone.  I was just about to ask Nigel to come for a drive with me so he could see what he thought when we went somewhere in his car.  The noise was just the same (awful) but Nigel assured me that nothing had changed.

The dreadful racket continued to completely drown out the car radio.  I left it permanently on when I was driving, out of habit and hope, but things didn’t improve.

One day I went to a meeting of people who lead groups for our local University of the Third Age; I was giving a very short talk about hearing loss, as part of the proceedings. I was fine when I was talking but when other speakers had the floor I really struggled.  I switched the loop setting on and off.  I tried “loop plus microphone” and “loop without microphone”.  Nothing made much difference. Hearing was hard work.  Given I’d been to several other meetings at this venue since I’ve had the implant and heard speakers really easily, without using the loop at all, I decided something was seriously amiss.

Instinct won out and I emailed the hospital.  (A couple of weeks had gone by, which I know doesn’t sound like a long time but it seemed like an age).  Soon I had another appointment.  Adjustments were made, reducing the volume of some low frequency sounds.  Immediately, everything was fine again.  Programming is a bit of an art form, I think.  Some of those low frequency sounds had been increased just that little bit too much and were drowning out everything else; a slight change but one that had really knocked me back.

The audiologist is reliant on my feedback, too.  Maybe I should have winced at the increasing volumes a little earlier?

Instinct is a funny thing with hearing loss, isn’t it?  We know that, very often, a new setting on a hearing aid (or speech processor now, in my case) will cause initial problems.  We’re used to that, so we persevere, in the expectation that the brain will make sense of it before long and that things will ultimately be better than before.  But sometimes, after a while, instinct tells us that this isn’t going to work.  What we need then is an audiologist who is going to listen (as the Cochlear Implant Centre did) and make changes.  Sadly, “battles with my audiologist” is a regular conversational theme amongst my hearing loss friends, because sometimes audiologists seem too swayed by the THEORY of what should make things better for us rather than the REALITY we are telling them about.

So another loud cheer for the Yorkshire Auditory Implant Service then, who listened.

 

Image copyright: blueringmedia / 123RF Stock Photo

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2 thoughts on “A cochlear implant programming problem

  1. Hello Vera, it is strange how we struggle along with a certain setting, be it on hearing aids or CI because a professional has made the setting. I do wonder how much some professionals actually listen to their patients. I normally make notes and print them out before an appointment to see an audiologist so she/he has a hard copy of any problems I have. It does not help that one might see a different person at each appointment, I am pleased that adjustments were made for you once you got back to the CI centre and you can once again enjoy your activities.

    1. Thanks Pat. Yes, I sometimes wonder that too, but my experiences at the CI Centre have been much better than elsewhere. To be fair, many programmes/new hearing aid settings do sound very weird initially so my instinct is always first to trust the audiologist and give it some time. But then, if time doesn’t help, we need to be assertive and say that something’s wrong.

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