10 things I wish audiologists had taught me

Audiologists and hearing rehabilitation

Gianluca Trombetta: A new course to the rescue

When my audiologists finally convinced me to start wearing hearing aids at age 20, I expected to immediately have perfect hearing. But of course, that did not happen. And then I found myself with questions and in situations that I did not know how to handle.

What was I to do when my hearing aids did not work? How should I tell my work colleagues about my hearing loss? How do I properly enjoy my dinner out or a day at the beach? And what technology accessories are relevant for my needs?

I was disappointed and frustrated by what I felt was a lack of support from my audiologists. But I’ve learned that hearing aids are just the start of the hearing rehabilitation journey, the term I use to describe a comprehensive approach to improving your hearing.

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Sound …. with a bite!

The SoundBite is a bone conduction hearing aid which was approved by the FDA in January and is now approved in Europe. Each aid is custom made for the patient. It transmits sound to the cochlea through the jawbone and teeth, across a frequency range of 250 to more than 12,000 Hz. The ITM (In-The-Mouth) picks up sound wirelessly from a small BTE part. It runs on rechargeable batteries. So yes, you’ll be wearing something on the ear and in the mouth, but hey, it’s this or surgery for a BAHA.

More information on this from Sonitus Medical.

Product images > after the jump.

100,000 hits!

Readers, thank you for visiting and contributing to this blog! We reached 100,000 hits today. In doing so, we are creating a community for others who are following us in their journey to managing a hearing loss.

Coming up, we have *drum roll* …. hearing aid clinic issues, bilateral cochlear implantation, cochlear implants for Ménière’s disease, the art of communication, lip reading.

Are there any issues you would like to see featured?

The world’s first invisible hearing aids

I spotted this hearing aid, the iSync, which claims it is the world’s first invisible hearing aid, going deeper into the ear canal than a CIC hearing aid (Completely in Canal).  This aid fits a moderately severe hearing loss and it removes background noise so you can hear speech more clearly in noisy places. Sounds great!

Steve tested the iSync out, you can read the detailed account here, and how he feels about the iSync here.  I understand how Steve feels about pushing the iSync deep into his ear canal – I once had an audiologist push the cotton block deep into my ear canal before inserting resin for the  ear mould impression, he went a bit too far and it hurt like billy-o.

It’s great to see someone so happy with their hearing aid. Quality of life is priceless, really.

(So sorry the iSync video is not captioned!)

Phonak also supply the Lyric which stays in your ear canal for up to four months. They market as the contact lens for your ear. It is available on subscription and your hearing care specialist replaces it every 4 months for you. Easy peasy. If you are interested, just fire off a request to Phonak and they’ll tell you where to find your nearest hearing care professional.  If you live in the USA, check out their US website where you can obtain a trial of the Lyric.If you live in the San Francisco Bay area, you can take part in a free clinical study and try out the latest technology.

You can watch a short video of the Lyric here.

Bilateral implants

I’m enjoying being able to hear with my implant but as my hearing has improved, my perception of sound has shifted in my unimplanted ear. The hearing aid makes life sound truly awful now – if I can hear anything at all. The difference between my two ears is stark.

Last Thursday I wore my hearing aid all afternoon. [Do I get 5 stars?] The earmould burned my ear for 30 minutes but I kept it in. I wanted to explore the difference between the cochlear implant and hearing aid. Wearing them together in my silent office, nearby sounds suddenly seemed too loud, low and harsher. Putting my mug on my desk sounded like a crash. Ugh.

This is my first ‘hearing’ autumn, and it’s BEAUTIFUL! I took my dog to the park for a walk. With my implant, I was able to hear the autumn leaves crunch crisply and beautifully beneath my feet, the trees rustling in the wind, the traffic driving past the park, people talking and laughing as they walked past me, aeroplanes flying overhead, my footsteps on the path and other footsteps approaching and receding, my dog panting, the clicking of his nails, his ball *thunking* on the ground, the soft swish of grass under my feet, the birds sweetly tweeting.

I flipped the implant off and switched my hearing aid on.

Flashback to seven months ago.

All I could hear was the faint sound of my own footsteps. Around me was silence.

I felt so disconnected. So alone.

On the outside, looking in.

Just like I used to.

I put my implant back on and the rainbow came back. Some days I really do feel as if I have half a head of hearing. I feel as if I have an abyss on my right side. There’s nothing there to hear. Sometimes it feels as if I’m not really present. Disconnected. Unreal. So I’m thinking of getting a second implant. In the UK, this means paying for it myself, either here or abroad. Sooooo …. what’s it gonna be? An implant or a house deposit? An implant or a Porky? I’ve not yet met a bilateral user – I only know of two in the UK. Meeting a unilateral user was my tipping point a few months ago. I’m wondering what’s going to be my tipping point this time. Too much furniture? My crap driving?

The next NICE review will be in February 2011. I’m hoping they will approve bilateral cochlear implants for adults in the UK, but I’m not holding my breath. A second cochlear implant gives the user localisation of sounds, improved listening performance, and improved listening against background noise. Advanced Bionics are offering a webinar on bilateral cochlear implants tonight.

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Advanced Bionics press release –

It’s no surprise that two ears hear better than one. Just as we are born to hear with two ears, using cochlear implants in both ears (bilateral cochlear implants) gives you or your child the best opportunity to hear more naturally. Whether you are considering implants for the first time or have used one implant for years, today’s cochlear implant candidates and recipients experience many benefits of hearing with two ears. Find out if you or your child may be a candidate for bilateral cochlear implants. Hear first hand accounts from those who know best, cochlear implant recipients and their families.

REGISTRATION AFTER THE JUMP

Online. Oct 19, 2010. 6pm Pacific/Los Angeles (9pm EST/New York, 2am GMT/London)

Contact: hear@advancedbionics.com

Captioning will be available.

Why Naida? Win an iPad.

Phonak are running a competition. All you have to do is to tell them why you like their Naida hearing aids and you could win an iPad.

Competition : 1000 reasons for Naida

Facebook : Phonak Naida

New website for hard of hearing

Dear Auntie Tina

I would like some suggestions on what I can design or put on my website that people who are hard of hearing might like to see. This isn’t a business venture more of a personal desire. I’m lifelong hearing aid user and recent cochlear implant in one ear.

Thanks.
Patty

Hi Patty

The best thing is probably your life experiences and observations! Everyone has stories to tell, which often help or inform others.  I’m looking forward to reading about your experiences as I’ve been a lifelong hearing aid wearer myself and my cochlear implant was switched on 4 months ago. I’m considering wearing my hearing aid in my other ear again, but keep putting this off. The cochlear implant and hearing aid are so different, what I hear through them is a world apart, it’s a tough thing to wear both at the same time.

Let us know what your website url is when it’s up and running. Looking forward to a good read!

Tina

Music makes my heart sing

I’ve just had my 3 month checkup. The first person I saw was my surgeon who is a very happy bunny. All looks good! My internal implant is a little sore along the side of the bump, this turned out to be where it touches the processor. I’ll need to hop along to my opticians and get the arm of my glasses (and sunnies!) adjusted so it doesn’t press against the area behind my ear and weaken the skin.

I then went to see my audiologist. She was also very happy at my progress. I had all my electrodes set again to maximum comfort levels and was given a slight increase in sound. I asked for ClearVoice (high) to be replaced with a normal program with a wider IDR (Input Dynamic Range) of 70 for music. With a wider IDR (explained here), you gain a wider range of sound. For the last two weeks, music has sounded pretty much perfect. When I listen to my iPod with the 70 IDR, it sounds even better, it’s so beautiful that I don’t want to stop listening. If I close my eyes, I can pretend I am hearing in stereo, as I sit enveloped in this wonderful sound that is in-my-face-listen-to-me, full and rich, swirling around my head and making me feeeeel the emotion. Vocals sound normal and some are so beautiful that they make me want to cry. Isn’t this what music’s all about?

I had a hearing test and have improved in the last 2 months so this was great news. The decibel range of zero going down  to -30db is considered to be a normal range of hearing for a hearing person (above the red line).

Red dots : My hearing 3 months after activation
Blue dots : My hearing 2 weeks after activation
Black dots : My hearing before the cochlear implant

My speech and language therapist tested me on my language comprehension, in the left ear with cochlear implant only. Here’s an updated progress chart from pre-implant through 2 weeks post-implant, to my current 3 month status. I’m aiming to get all speech comprehension scores close to 100%.

KEY:
Sentences in quiet = Listening to sentences without lipreading
Words in quiet = Listening to single words without lipreading
Lipreading & sound = Lipreading and listening to a speaker’s sentences
Lipreading in quiet = Lipreading a speaker’s sentences with no sound

The biggest change has been my ability to hear sentences in a soundproof booth, it has jumped from 24% with a hearing aid to 43% with a cochlear implant. If I did not have the cochlear implant, this ability would have continued to decline. I have been able to understand some words when listening to my Harry Potter audio book, it’s so exciting when I am able to pick out a bit here and there. It’s hard work, it’s almost like concentrating but trying not to concentrate too hard – like when you look at those magic eye 3D pictures and try to see what’s hidden there. My ability to hear words in quiet hasn’t changed, as this is very difficult to do without context to help.

My lipreading in quiet scores, at 43%, are very high. I spoke to a professor whose area of interest is forensic lipreading, and she said most people would score 5% in lipreading in quiet. Deaf people get to practise lipreading every day of their lives but as there are so many homophenes and unseen phonemes, it is not possible to score 100%. It’s great that I can still lip read well – and thank goodness I can, or I’d be stuffed trying to get through all of this! I’ve been worried that my ability to lipread would decrease as I learn to hear and try to break the habit, but my audie reassures me and academic studies show this is not usually the case. However, some of my implanted friends say they cannot lipread any more, discovered when they run out of battery power and are forced to rely on lipreading. So I don’t really know if I’ll be able to hang onto my lipreading ability.

I have experienced some new sounds in the last month. The beeping as the green man (walk/don’t walk) sign flashes when I cross the road, and I can hear it All The Way Across The Road. Amazing! I went to see a ballet, Swan Lake, at the Royal Albert Hall.  This was my first visit to a ballet. I was able to hear the orchestra very well and was surprised to see the ballet dancers enter and exit stage very beautifully and gracefully, but with an incongruously ungraceful THD THUD THUD THUD THUD THUD at the same time! I peeled a banana this morning and was surprised by the loud SSSSSSSSSSS sound it made. I then popped out to the shops and another new sound had me jumping in fright so much so that I almost threw myself into the nearest wall. I heard this very loud and deep roar right behind me, I could almost feel it and it jumped out of nowhere, I didn’t know what it was, and it frightened the crap out of me. I used to be scared of dogs that jumped and barked at me so maybe this is where that fright came from, apart from it being so loud and unexpected. I then saw a Harley Davidson go past, obviously it revved just before it reached me. SHEESH!

Although singing voices sound normal, speaking voices don’t sound normal yet (when people talk to me directly) although they are not far off.  I feel as if I am living on Planet Cartoon as people walking past still sound like Minnie Mouse or Donald Duck.

And my shoes squeak all the time! Bah!

Assimilation: Two months

It has been 2 months since activation. What can I hear now?

Animals seem to have taken over my world. I have a large leafy garden and can hear birds all day long, not just blackbirds, but magpies, starlings, a lovely orchestra of TWEET TWEET, TRIILLLLL, CHIRP CHIRP, PING PING, COO COO, PEEP PEEP. I love sitting outside listening to them. At the moment I am hearing around ten different types of bird calls. One night I cracked up laughing. I could hear 3 birds singing to each other, they sounded like a phone ringing, knocking at the door and the doorbell. When night falls, all the birds fall silent. Then the dog next door starts barking and carries on for an hour. Then my own dog starts barking in his sleep. I have also heard our cat miaow. I haven’t heard our foxes yet and we have plenty!

Lower frequency sounds have started to come back. I can hear the rumble of traffic and the bus engine. Sounds I am enjoying listening to are male voices. Those sexy, rumbling, low, growly voices. I’m fascinated by how different they are from female voices. Who woulda thought a voice could be so attractive?

I have been able to hear a teeny bit on the phone. No special equipment required! I use my implant as normal, on 100% T-mic microphone, pick up my mobile phone, and put it to my ear as any hearing person would. The T-mic mimics the hearing ear as it is positioned at the ear canal, aiding directional listening by collecting sound in a more natural fashion than a hearing aid or other brand of cochlear implant. I do need lots more practice in discriminating words before I can use the phone easily. Considering I have been deaf all my life and have never used the phone, this blows my mind. I love hearing voices as it is like the captions have been shoved straight into my brain, the understanding is just there. It seems so effortless when it happens.

I have been able to hear speech in other situations too. Last weekend, I was the 2nd photographer at a wedding, working with Amanda, the 1st photographer.

Michelle and Lee, the newly-wed couple, were standing in an archway. Amanda was taking photos from the inside of the building whilst I was taking photos from the outside.

Michelle and Lee were kissing for this shot and they kept kissing. The kisses became slower and longer. More lingering. I didn’t really know where to look. I started thinking “Hey guys, maybe time to get a room?”

Then out of nowhere, I clearly heard Amanda shouting “Again! Again! Again!”

“….. Slower!”

Situation heard and understood!

The street is incredibly noisy. I use Advanced Bionic’s ClearVoice to reduce sounds in noisy environments such as the street, train station, on the train. It’s fantastic, and I can pick out voices around me as unwanted background sounds drop away. I tested ClearVoice in a wine bar, and was able to lipread and listen to other cochlear implant users with ease. I heard one lady who came up to my dog and said “Hello darling”. I actually heard her say this behind my back! (I had to double check with her to make sure I had heard her right – I don’t trust my new hearing yet.) I noticed that the hearing aid users were unable to participate easily, they looked stressed and were often left out of the general conversation. This was how I was 3 months ago and I felt sad for those people. The cochlear implant users really had to make the extra effort to include the hearing aid users in the conversation. We totally understood, for we had all been there.

At work, with my office door shut, I have been able to detect my colleagues Calum talking in his soft Scottish brogue in the office next door and Karen coughing as she walks down the corridor, the photocopier room door squeaking next door, the photocopier spewing out paper, people’s footsteps as they walk past my office, people talking outside the building. I was able to pick out clear (albeit echoey) voices in the kitchen as we gathered together to celebrate Robert’s birthday – it is no longer a wall of horrendous mushy sound. I am still loving the sound of the clock ticking on my office wall.

Today I tried my hearing aid in my other ear for the first time in 2 months. An aeroplane flew overhead and I could clearly hear it approaching with my cochlear implant. To my shock, it didn’t even register with my hearing aid. My own voice sounds deeper and much quieter with my hearing aid, and I can only hear bits of it. I put the television on and set it at a volume that was nice and loud for my cochlear implant. However, I could not hear it at all with my hearing aid. The quality of the sound is different between the two hearing devices – higher pitched with the implant, deeper with the hearing aid. I am horrified at the difference and at how much sound is missing with the hearing aid – which I used to wear in my better ear.

How much I have missed the sounds of life – without even realising it. I have a lot of catching up to do!

Platform 9 3/4

It’s been one week since switch-on and what a start it’s been to my journey to better hearing. It’s been nothing like I dreamed it would be, with unexpected twists and turns, and I’m sure, many more to come.

I was delighted when the beeping faded and real voices started to come through. I had been pumping the volume higher and higher and finally requested an early tune-up from my audie last Friday. Now I was able to hear the keys being depressed on my Blackberry (not the tone sounds, but the actual key depressions themselves), cutlery on plates, and traffic just as it whizzed past me. I was happy with the increased volume but as I left work on Friday evening, I stepped out of the building and this loud whine started up in my head. EEEEEEEEEEEEEEEEEE. It didn’t go away. EEEEEEEEEEEEEEEEEEEEE. I couldn’t hear anything else, just this loud EEEEEEEEEEEEEEEEEE. What was it? Was there something wrong with the cochlear implant? EEEEEEEEEEEE. Or my brain? EEEEEEEEEEEEEEEE. I ripped the implant off after 30 minutes as I couldn’t stand another minute of EEEEEEEEEEEEEEEEEEE. It just did my head in.

*shudders*

The next day, I turned the volume down quite low and this was a relief, as I was busy taking photos all day in Covent Garden, it was very busy with lots of people around, making for lots of background noise. I didn’t want to take the cochlear implant off as in order to maximise success, particularly in the learning stages, the user should wear the processor for every waking hour possible. This is not a ‘Nazi’ view (as one ignoramus has accused me of having) but a strategy recommended by cochlear implant centres. A cochlear implant is not like a hearing aid at all. It’s a completely different animal. The more you wear it, the more your brain becomes accustomed to sounds, the more synapses your brain will create, the more sounds your brain will recognise, and the better your hearing will become. It’s like training to be an athlete – an hour here or there when you feel like it will not help you to become a world-class athlete, but regular and consistent training will.

On Sunday, I turned the processor up again. I was thrilled to hear my dog ‘talk’. He talks a lot! Erasing my notes, I was shocked to hear the eraser scrape across the paper. It moves ….. ergo it makes a sound. I heard a racket and discovered this to be pigeons and doves in my chimney. I heard the door unlock and the light switch click, in the bathroom next door. I could even hear myself breathing. Stunned was probably how I felt that day.

It was Monday morning and I slapped the processor on my head. EEEEEEEEEEEEEEEEEEEEEEEEE. I couldn’t hear anything else, EEEEEEEEEEEEEEEEEEEEE, couldn’t stand this for another second, EEEE – took it off, and hightailed it to the hospital. The processor was checked and the impedances were fine. I was given a new mapping and the whine was still there, quietly in the background, so the audie turned the high frequencies down to 5% and switched my HighRes Fidelity 120 from HighRes-P to HighRes-S which has softer high frequencies. She reckons that I have pushed too far, too fast, and my brain is protesting at all the new high frequencies I haven’t heard before. This new programme seemed to work. I got a shock to hear a colleague preparing her lunch, she was using a knife to jab holes in the plastic wrapping of her microwave lunch, it sounded like loud gunshots. I picked up the sounds of my dog sighing (like, every 10 minutes!), my footsteps on carpet, and the beeping of the supermarket till in an otherwise silent supermarket.

My tinnitus decided to make a comeback in my unaided ear and gave me this lovely loud drilling sound for the next three days. I haven’t been wearing my hearing aid as I want to give the cochlear implant 100% and get this up to a high standard before giving my brain mixed signals to cope with. Sounds from hearing aids and cochlear implants are very different; the brain does acclimatise to cochlear implant sound but some people’s brains do not like mixing the two. This is something I may try when I am ready, perhaps in six months time. In the meantime, my brain does not like having no stimulation in the unaided ear, and is giving me merry hell with tinnitus. It has, however, been quiet for the last two days – until I start my Clix soundwork. Fickle brain! Clix listening activities are available from The Listening Room, where you can practise listening skills on your own or with a coach, and record your progress.

Over the last couple of days I have been able to pick up new sounds from downstairs – voices and rapping on the TV. I’ve also been able to hear footsteps coming up the stairs and a bottle cap being unscrewed from the bottle. AGC (Automatic Gain Control) is another thing I’ve noticed. This is a process whereby the hearing aid or cochlear implant automatically reduces all sound for a few seconds when a loud noise is heard. So when I call Smudge, my world goes silent for two seconds. It’s a very odd experience.

I listen to a chapter of my audio book every day, Harry Potter and the Philosopher’s Stone, read by Stephen Fry. This book was recommended to me as Stephen Fry has a very friendly, clear voice which is easy to listen to. At first his voice sounded like a whine with gaps for the spaces between words, which was very very tiresome to listen to. Now it sounds clearer, I can tell there are words in an English accent, however I am still unable to understand what is said. Today I was able to pick up on when Stephen uses different voices for the characters, and on the emotion in each voice, which makes the story come alive. Voices still sound tinny and not quite normal, but I expect this to change soon. ESL-Lab will help as this website provides lots of different voices to practise listening to.

It’s truly amazing to reflect on how much has changed in the space of one week. From nothingness, to hearing all of this.

My ticket looks promising. I had better run and catch the train to Hogwarts – has it left without me? Wait up!