Dinah’s Cochlear Implant Journey - Part 1

We’re following Dinah, one of my patients, in real time as she goes through the process of leaving my service to get a Cochlear Implant (CI). Along the way, I’ll be explaining what these are and why I would ever “get rid” of a private patient! There’s something here to appeal to:

• Audiologists - private or NHS

• Patients

• Cochlear Implant teams in the NHS

It’s a warts and all blog, as I have seen the polished videos from manufacturers and don’t feel they fully reflect the journey or the real level of commitment required.

Likewise, the “against” side don’t highlight the major changes to CI services that there have been in recent years. It’s now a viable, attractive solution for many, many people.

About Dinah

Dinah is in her mid 70’s and has worn aids for 40 years. She’s moved from a mild/moderate loss in the beginning, to a “left corner” audiogram now (among the most severe hearing loss one can have, with sensation only in the lowest frequencies at quite high volume levels) over those 40 years. She’s fairly fit and well, with some peripheral vascular issues. She is my patient, but also my Mum, which gives me an all-angles view of her hearing loss and experience. Thank you Mum, for allowing this access to educate others.

Audiologist Perspective on Hearing Loss: Dinah is well into the criteria for CI. She has been eligible for some time, and has been managed with high power RIC aids for the last 15 years. Now we are at the stage where they simply cannot be turned up any more without consequences for distortion.

Dinah is a good CI candidate as she started wearing aids as soon as as they were needed, and had worn them continuously. She manages this severe loss incredibly well, using lipreading and a partner mic to support the aids, however it is clear that we are only a notch away from not managing at all.

What is a Cochlear Implant?

Modern implants have many electrodes, which feed into (up to) 22 different pitch/frequency areas of your cochlea to stimulate it in response to external sound. It does the job of your outer ear, middle ear and inner ear, directly stimulating the nerves. In most cases of hearing loss, the nerves are unaffected, so the implant really does restore what has been lost.

With 22 electrodes, sound is split into 22 channels. This is not as ‘detailed’ as normal hearing, but represents massive advancement over older implants, which gave a “Mickey Mouse” speech experience due to only touching higher frequency areas.

The newest format has a receiving plate under the scalp and the electrodes come from that, all under the skin/bone. A sound processor is the only visible part, and it magnetically sticks to the scalp, over the plate.

via Cochlear™️

The Decision Making Process (An Interview)

SJ: Tell me about your experiences of hearing loss up to now.

D: In the beginning, around 1985, I had tiny in-the-ear Starkey aids, very small, and they were all I needed. I could manage well when I went out, and had a phone amplifier at work. I had several pairs of NHS aids and private aids. My hearing continued to worsen over the decades but technology largely kept up with me, and private aids gave me a boost, so until the last 5 or so years I didn’t feel I was missing out.

Now though, I hate the way others are having to make so many allowances for my hearing. People can lose patience, but even when they don't, I feel terrible. I cannot keep up in groups, and I can see why people stop bothering to go out socially in noise. Even with the best private hearing aids there is a point where you just can’t hear well enough.

SJ: I’ve seen that happen with you. You’re still going out with family but you’re not participating in the conversation like you used to. Then when we’re one-to-one, suddenly I remember you’re a whole person with ideas and opinions of your own! And this is with a deaf family - I can imagine it is worse with families who don’t understand hearing loss.

D: Yes, I think it would have been upsetting without having you as my audiologist. You’ve explained about cochlear implants and let me get used to the idea over time.

SJ: You were worried at first and refused to let me refer you for an implant. What changed?

D: I didn't want to risk my hearing getting worse. Initially, I always thought cochlear implants were for people who were "really bad". You explained to me that it doesn't really get much worse than this. I think because it happened gradually I just got used to it bit by bit. I finally watched "Vera's Journey" online as you suggested. I also met your other implanted patient. [Editor: thank you Pat, you’re a star!] I knew I was avoiding going to as many events as I would have done, because they're not enjoyable. Seeing Vera’s journey pushed me over the line, seeing someone else who has a comparable level of deafness, enjoying their implant and even birdsong again.

SJ: there was a palpable change in you. You suddenly got excited about a CI. Even I did, and I’m a way off yet! For me I have gone from knowing I could refer you, to actively wishing you would let me refer you. I am so confident now that it’s the right move, I’m glad you’re doing it.

COMING UP IN PART 2

The referral process and initial testing at Yorkshire Auditory Implant Service