In Jan/Feb 2020, I chose to set my ‘T’ levels (the minimal amount of electrical stimulation required for the auditory system to perceive sound) too high for my brain to tolerate, but my audiologist and I hoped that with time it would settle down and I would benefit from hearing lower pitches as a result. I had an appointment to return in April 2020, which was obviously cancelled due to the pandemic and I waited until August 2021 before requesting an appointment and I was seen in September 2021. I remember that these settings meant I could hear more background noise around me and understandably, my speech perception skills slowly dropped off. Back then I was working in a pre-school; sounds like children crying or yelling were absorbed into the ether & I was unable to quickly respond to a child in distress or two kids that had taken a dislike to each other! I was mistaking my husband coughing for my name (“cough cough” = “Sarah” somehow!) and in the ASSEs (Auditory speech sounds evaluation) for a few years, I had been unable to hear the difference between ‘i-a' and ‘y-I’ at 4K and ‘eh-a’ and ‘er-a’ at 1k, which again affected my speech perception. In addition to this, and perhaps the worst thing for me, was the fact that when all around me appeared to be quiet, I later learnt that my processor was picking up environmental sounds around the 15db at 1K and I was hearing this as a ‘sink filling up with water/water trickling’ sound. It almost verged on a buzzing noise too. It wasn’t very relaxing and meant I didn’t look forward to quiet and I just preferred to remove it, which was a crying shame!

So... In September 2021, I saw a lovely audiologist, Gemma, (who I hadn’t seen before) and she sympathised with my frustrations that my hearing hadn’t been as good as it was in 2017/2018. Straight away, she set about testing my hearing levels, using the normal ‘bleep’ test, she tested my BKB sentences & did the ASSE test. She also tested my impedance & although one electrode was a little high, she said we would monitor it and it wouldn’t affect my hearing. She also adapted one of the tests to get me to count the beeps, rather than use the bleeper (hand switch) because my tinnitus kicked in during the tests. This enabled her to see what I was *actually* hearing and what was a manifestation of noise in my brain (tinnitus). Unbeknownst to me, whilst doing all these tests, Gemma was switching between the program I’d walked in with and a new one that she was tweaking as she tested. When she finished testing, she put the new program on. Immediately, her voice was clearer, I could hear more consonants and amazingly, the ‘trickling’ noise had gone! Gemma quickly switched back to the previous programme for me to compare and her voice sounded like she’d gone underwater… With the tweaks she’d made, I finally scored 100% on the ASSE test – a feat I hadn’t been able to do for a few years! Here are the results of the BKB tests:

Female voice, in quiet, CI only:

Old settings 64% - New 86%

Speech in Noise, female voice, CI only

old settings 20% - new 46%

My audiogram is below with my pre CI hearing levels shown by the pink dotted line at the bottom – a ‘severe/profound’ hearing loss and the black dots at the top – what I can now hear.

It is so important to highlight here, that a CI is not a cure for deafness. These black beautiful dots below do not translate to “normal hearing” in real life, into noisy, busy, multifaceted environments. For me, these dots translate into being able to hear speech when previously, I couldn’t hear consonants or hear without lip-reading. These dots translate into hearing my son yell “Mummy” 50,000 times a day, when previously I might have heard “Mumm*”. I can hear the difference between him reading aloud a ‘b’ or a ‘d’; for god’s sake the word is ‘dog’, not ‘bog’!

My take home point from this recent programming is, find a good audiologist and never let them out of your sight!! Unfortunately, we can’t stalk our NHS staff and so my advice is: write down every single sound you feel you’re muddling up. The more specific you can be, the more your audiologist can target an electrode/pitch array and tweak it to improve your hearing ability. And when you do hearing tests/speech tests, be honest – tell them exactly what you are hearing as then they can apply that knowledge to their programming.

My new Phonak Naida Link Hearing Aid!

In June 2017, I received the Naida Link hearing aid. This hearing aid is compatible with my CI processor and the two can communicate with each other. When I want to listen to music or a telephone call using my Com Pilot, both the Link and my Naida CI processor will connect to it at the same time, so I can hear using both ears. I can touch the program button on either my hearing aid or my CI and it will effect the program change in both ears at the same time! There is 1/2 seconds more time delay on the CI side before I can hear again but it's a small price to pay...

I can choose which side I want to hear on by pressing the program button on the appropriate side – this is so useful in the car when I want to hear the passenger or my child in the back seat!! 

I noticed my speech perception improve within the first few days after I started using the Link, walking along corridors and listening to a child at the same time was no longer such an effort! And with the zoom control feature in a noisy environment, it feels like the child’s voice is right by my ear! 

In August 2017 I had the automatic settings on the Naida Link hearing aid switched off because it affects my perception of the environment and my concentration on speech sounds. I noticed this mostly when I was walking with people I was trying to listen to, especially when I wasn’t lip-reading them. If I turned my head away from the person, I could no longer hear their voice and in addition to this, I couldn’t really hear any environmental information. With each turn of the head, I found myself incredibly disorientated and I really didn’t like it. Once it was turned off, I was much happier with the hearing aid and my ability to hear with both ears.

#lifeison

Upgrade from Harmony to Naida Q90

I was upgraded from the Harmony to the Naida Q90 in November 2016. I’d been waiting patiently since the 5 year mark, so 3 years of waiting felt like a long time. I didn’t expect a lot, because I didn’t want to be disappointed, but I felt excited to finally benefit from Advanced Bionics’ (AB) newest technology.

Upgrade day came and went without too much of a hitch. There was a processor mix up over the colour (I have the beautiful Caribbean Pirate colour – thank you, AB) and there was, admittedly a few moments of panic when they first turned the Q90 on; all I could hear was a horrid buzzing sound. “Am I not compatible with this system?!” was my first thought. It transpired that they needed to switch a few settings off that were used with the Harmony processor between the internal and external implant, to allow the Q90 to send its information through. 

“Phew! But it sounds the same… Nothing is different.” Part of me was incredibly relieved. I didn’t want the same emotional upheaval that I experienced when I first got my implant in 2008 but at the same time, I wasn’t gobsmacked by this amazing new technology! I loved the smaller size though, it just ‘disappeared’ when I was wearing it and it was so light! 

Just two days later and the following *amazing* benefits started to emerge:

• Better pitch perception without the assistance of my Phonak Hearing Aid – the sound with my CI alone no longer sounded 'flat'
• Improved listening in noisy conditions 
•  I HAD A FIVE MINUTE PHONE CONVERSATION WITH A STRANGER – I never achieved this with my previous processor. I have also made a phone call to my doctors and spoke with the receptionist for a few minutes about making an appointment and discussing the possibility of needing an x-ray at the hospital.
• Speech sounded clearer when listening to music
• When listening to music, I could also hear my own voice. It use to ‘disappear’ with my Harmony processor

Trialling a Neptune

                                             Advanced Bionics have given me a Neptune to trial (Thanks AB!). This is the world's first fully immersible, waterproof cochlear implant.  I love it! Let me tell you why: I can swim, shower, exercise indoors or outdoors without any fear of rain, water or sweat impairing its ability to function. It's small and light, it looks trendy and I can personalise it with my favourite colour covers and headpieces (available from Connevans). 

Immersing myself underwater in a bath for the first time to test my hearing ability underwater was, scary, to say the least because I didn't trust electronics and water! I had my other half on standby to fish me out as I tested it! Once underwater, I was amazed, I could hear his voice and hear my body sliding about on the ceramic surface of the bath.... What with the water sploshing about and the grouting groaning underneath the weight of the water and my body, I couldn't handle all the noise and I quickly wished for silence again!

On another day, I spent a whole day in a Spa with my Mother, where I was able to test its ability to hear in a sauna, steam room, Jacuzzi and a swimming pool! Previously, in this environment I would have had to spend the whole day in silence but not that day... I could relax in the sauna and steam room knowing that if somebody spoke to me I'd be able to clearly hear them and I swam in the swimming pool, hearing the water splashing and lapping at my shoulders for the first time in a very, very long time. I could also still hear the music, whilst underwater; it just sounded slightly muffled... In a normal environment, everything sounds slightly louder with the Neptune, because the microphone is in the headpiece, but this is a good thing in my opinion! There is a sensitivity dial too, so you can adjust the sound settings to your own personal levels. 

I've worn it in a variety of combinations, clipped into my hair beneath my ponytail, clipped to my sports bra and attached to the arm band provided by AB. My personal preference is to attach it to my sports bra because I do wonder what people think when it's pinned into my hair! I've had somebody at my running club come up to me (they weren't aware that I was deaf) and jokingly admonish me for listening to music when I'm running in a group of people: "what do you need that for?!" and then he realised that there was a headpiece magnet at the other end, not a headphone! He couldn't apologise quick enough and every time I've seen him since, he banters: "How many more times do I need to apologise!?"

The only downside to the Neptune is being unable to adjust the volume and programs to adapt to the different listening environments without first attaching the Neptune Connect. I often find that running outside requires a different volume to running in the gym or swimming in a swimming pool and I need to carry the Neptune Connect with me to adjust the volume; it'd be nice if one day this component was built in and waterproof too...

It is important to care for the Neptune by taking it apart and using a Zephyr Dry & Store overnight on a frequent basis, especially after being in a wet or moist environment so that the components can dry out. I'd heartily recommend a Neptune for people who are active, because there's nothing on your ear so you can sweat, swim, roll around, climb or jump about to your heart's delight (with an extra magnet in the headpiece)!

Advanced Bionics BEA International Mentors Meeting in Staefa, Switzerland, September 2012

For quite a few years now, I've been a member of the UK Bionic Ear Association for Advanced Bionics (my CI company) and in September 2012 I was lucky enough to be one of two UK mentors to be invited to the first International BEA meeting in Staefa, Switzerland. We flew out there on Wednesday afternoon and flew back to England on Friday evening so it was a whistlestop tour of everything AB had to offer at their Staefa offices and lots of FUN!

In no specific order of events, the food highlight of my two days was having a chocolate workshop with all of the AB staff and mentors. In this, we learnt how to make a chocolate cup and shoe and took them home as gifts for friends and family. We also were given free license to 'sample' all of the different types of chocolate that we could see laid out and you can probably imagine, we went a bit mad! Dark, milk, plain, lemon, nuts - we tried all different types of truffles... It was yummy and so much fun, in our personalised BEA aprons (that we could keep) that I went back to the hotel with lots of new memories and 7lbs heavier!

At some point, we had a presentation from employees at Phonak (got to see a prototype of the future processor - exciting and jaw dropping didn't cover it!) and had a tour of the huge factory next door to the offices. In there, we witnessed the mind boggling scale at which hearing aids are manufactured at from the tiny, nimble fingertip work being carried out by human workers and the vast, huge numbers of hearing aids that are lasered, cut out, installed, tested in seconds, minutes and hours and moved around the building by robots. Seeing crates whizz around over our heads whilst we walked from room to room only hinted at the size of the building and one wished they could sit in a crate for an exciting ride! (Think of the Monsters Inc film and all the doors) Disappointingly, we learnt that our CIs are manufactured in America, so we couldn't see that in action but for those of us that were hearing aid wearers or used to be, it was still incredibly interesting to see it all in action.

Part of the trip was about creating a short video to be posted on AB's YouTube channel promoting the BEA website so all the mentors featured in a video clip with personalised message boards. It was a lot of fun filming these and you can watch them here: http://www.youtube.com/watch?v=ffkFtkQZQEY&feature=share&list=PLo1a43uJmTy14eZlozNaF3A7MZjVEqhtJ

I feature in both the videos - see if you can spot my embarrassment at having to 'bop' my head along to music!

Just before we went home on the Friday, I gave a short PowerPoint presentation about my experience of having a CI to the other mentors and Phonak/AB employees. This was quite nerve wracking but I felt it was important to increase awareness of the unique and emotional journey that we humans go on when we decide to be implanted with a medical device. It was humbling to hear from the other international mentors who are parents of children that have CIs and we watched a video of a father's son playing the drums and singing in the bath with his Neptune. I work with hearing and deaf children every day and this video brought tears to my eyes (In fact, I don't think there was a dry eye in the room afterwards) because his parents had made the decision to give their child access to sound. A momentous decision that took a lot of courage. One day, I may have to make that decision myself and although I know what I'll do, it won't be easy because it involves handing your child over to surgeons and medical professionals for a life changing operation and lots of work afterwards. But it'll be worth it.

The highlight of the trip for me was making two bionic friends for life, they'll know who they are when they read this, and I'm glad the trip brought us together. We all had so many laughs together at the evening meals and I consumed more alcohol in those two nights than I have done since my university days! Another highlight was meeting the other BEA mentors, who came from the Netherlands, Spain and other European countries. Being together for two/three days and sharing our different experiences of acquiring CIs and mentoring candidates was a privilege. The language differences, surprisingly, wasn't a barrier and we all had a common experience of adapting our communication to understand each other, which helped. I loved being in Switzerland, with the crisp blue skies and fresh mountain air, and I was very sad to fly back to England.

A lot has changed in the last year...

Since getting High Res Fidelity 120 last year, I have experienced a lot of CI "firsts" - too many to note in one blog so I'm going to list them as bullet points and then work my way through them in subsequent blog posts. I have sorely neglected my blog whilst training to become a Play Therapist and there's no written record of my experiences in the last year, so I'm going to rectify this!

Here are the changes:

• High Res Fidelity 120 (HRF120).
• Advanced Bionics International Mentors Meeting in Switzerland 2012.
• Getting a Neptune!
• Naida Q70

High Res Fidelity 120  

I was excited to be finally using the strategy that my ears couldn't handle all those years ago and I could hear things that I wasn't used to hearing and this was great and I felt that my hearing plateau was climbing again but I spent much of my time confused, wondering why sounds were quieter instead of sharper, crisper! Eventually, after another trip to my audiologist, it transpired that I had spent a whole month, that's right, a whole month, listening through my 50/50 program meant for use with my FM radio system instead of HRF120! There had been a mix up in the order of the programs on the three program settings on my processor and silly me hadn't realised the difference between them. No wonder things sounded quieter, I had been listening on 50% of the sound coming through the microphone... Once this had been sorted out I was really happy with it all and I went off to learn how to process the 'extra' stimulation that I was receiving and this took quite a few weeks of practice, patience and perseverance. It kind of reminded me of the early days of my implant.. In the future, I'll ask my audiologist to write down the order of my programs so that I won't get them mixed up again! 

A bonus of having HRF120 is that ClearVoice (CV) seems much improved; everything doesn't sound so 'clinky' and it's a useful program in very noisy situations such as the car. I just wish my implant was in my left ear, as when I'm driving my CI is on the "wrong side"! I don't use it all the time, like I know some some users do, because I like the additional environmental sounds that CV will cut out in order to highlight speech.