Bilateral annual review: Year One

17 09 2012

It was time for my annual review. I can’t believe it’s been a year since I went bilateral. Oh how time flies!

I went through the mapping process, adjusting each electrode on my newest implant – which didn’t need much changing after all. My older implant needed quite a lot of adjustment due to fibrous growth and also, we had been focusing on my newest implant for the past year. After adjusting, my older implant sounded louder and my voice sounded a bit lower. Together, they sounded balanced and it felt as if I was wearing one hearing device instead of two.

Being keen and pushy as usual, I had some requests;

  • MP3 player volume : 20dB attenuation added to my music slot as when I’m plugged in with DAI (direct audio connect), the volume on my iPod is at zero and it’s still too loud – I can’t turn the volume down and have to do this on my implant processor instead. (We decided to sit this one out for a while)
  • IDR & music : Change my music program to IDR 100 (by setting my T’s to 30% of the M’s and Soundwave IDR to 80) with AGC on and no Clearvoice. (We decided to try changing the T levels at a later date)
  • Pulse width: Increase the pulse width from the default 18 to 26 uSec (We decided not to do this, as the latest Soundwave version will automatically adjust to maximise battery life)
  • Battery replacement: One of my batteries had broken (This was replaced free of charge, thank you NHS!)

The next step was a hearing test. They didn’t want to see TOO good a hearing curve as I would then be picking up annoying background sounds as well, such as air conditioning units. The blue line shows my hearing test levels two years ago (no hearing aids) and the red line shows my hearing test levels today (with cochlear implants). Great result!

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I took the speech perception tests and the results were *drum roll*

SENTENCES:

Lipreading – with sound 98%

Right ear/newest CI only – sound only, no lipreading – 68% (up from 43% in 2011)

Right & left ears – sound only, no lipreading – 87% (WHOOP WHOOP)

SINGLE WORDS:

Right & left ears – sound only, no lipreading – 43% (up from 13% in 2011 with one CI)

PHONEMES:

Right & left ears – sound only, no lipreading – 70% (up from 33% in 2011 with one CI)

I’m really pleased and honestly never thought I would be able to hear this well. In practice, it means I am able to understand people behind me saying something simple such as “Can I help you” or “CAWFEEEEE?”, I can have a short (predictive) phone or Skype conversation with someone I know, and I am much more relaxed about meeting new people and lipreading them. It’s still difficult to listen with ears that have never really heard sound except a distorted rough version, it’s difficult to use a brain’s speech processing area that has never made sense of speech nor held an auditory memory. It does NOT mean I “can hear” – honestly, if one more person asks me “Can you hear her talking”… I will slap them!

Now that I have sorted out the bilateral direct connection setup that works with an Advanced Bionics Harmony processor, I’m able to listen to my MP3 player without an accompanying nasty loud whine, and can really start working on improving my binaural listening skills. My favourite speech rehabilitation tools are Listen to English and BBC: Learning English. Listening to the iPod is fine with one direct connect lead, but two give out a whine (this doesn’t happen with my iPhone – only the iPod). Bob says the line out adapter provides a true line output, tapped off prior to the power amplifier – thus eliminating any noise that might eminate in that power amplifier… line outputs are never tapped from speaker or headphone levels in home or pro audio amplifiers. To do this with an Advanced Bionics BTE processor, you will need a splitter and a USB line out adapter.

UK: splitter

US: splitter

UK: USB line out adapter

US: USB line out adapter 

 

 

 

 

 

Final word …. Tel Aviv researchers have proof that two bionic ears are better than one. Read more here.





Phone call #8

2 09 2010

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I called Stu and guess what, he is a cochlear implant user as well! I find it amazing that two profoundly deaf people can just pick up the phone and talk to each other.

Stu gave me the name of a country and worked his way down the list above.

Then he made up a list of his own;

United States
Kazakhstan
Russia
Pakistan
Afghanistan
New Zealand
Fiji
Borneo
Malaysia
Vietnam
Cambodia
Chile
Uruguay

This was a fun exercise to do, although I was distracted by the noise of my dog eating his breakfast and crunching on his biscuits. I managed to get all the countries – eventually – and the high point was being able to hear the difference between Uzbekistan, Pakistan, and Afghanistan! Stu thought I answered the vast majority with confidence. I found that the difficult words were ones which were a bit short, unusual, or unexpected. I had a problem with understanding Brazil (Br sound), Mexico (unusual x sound), and Fiji (too short and unexpected).

I had wondered if I was holding my phone wrong. I have a Blackberry and hold it with the keypad against my face. There is a little grille on the back so I turned the phone over, but Stu’s voice was too quiet so I switched back to talking into the keypad. All my phone calls are with an IDR of 70, ClearVoice medium, and 100% T-mic.

I think anticipation plays a large part in learning to trust your hearing; it plays such a large part in lipreading that I’m automatically working out what I think was said and making it fit, instead of believing I heard what was said. Tricky, this!





Please, Audie, can I have some more?

18 08 2010

I had been told I had a 9 month wait until my next mapping session and I wasn’t too happy when I discovered Michele has a mapping session every month at her hospital, over a year after her activation. Apparently my large London hospital is too busy implanting children. In an attempt to jump-start my hearing’s learning curve, I popped in for a new mapping.

My settings were (Fidelity 120 HighRes-S);

Program slot 1: IDR60, ClearVoice medium, 100% T-mic

Program slot 2: IDR70, no ClearVoice, 100% T-mic

Program slot 3: IDR60, no ClearVoice, 50% T-mic

I asked for these to be changed to;

Program slot 1: IDR70, ClearVoice medium, 100% T-mic (my everyday program)

Program slot 2: IDR80, no ClearVoice, 100% T-mic (for music)

Program slot 3: IDR70, ClearVoice high, 50% T-mic (for noisy places)

I wanted an IDR of 80 to improve my enjoyment of music. I like an IDR of 70 as I can hear the lower tones in traffic and people’s voices. The default IDR for Advanced Bionics is 60 but I found this a little flat once hearing through a cochlear implant felt normal (about 3 months). Not everyone likes a high IDR and it can take some getting used to. The IDR is the Input Dynamic Range of the cochlear implant processor. This is not the same as the volume.

Imagine, if you will, you have been locked in a dark room for all of your life. The curtains are opened and bright sunlight floods in, diffused through the partially open window blind. At first, the light blinds you. It’s so stange and so bright that you can’t see. This is what it’s like at the cochlear implant activation. People who have been blind for a shorter time find it easier to cope with than those who have been blind all of their lives. Your eyes gradually adjust and you can make more sense of what you see – colours, outlines, contrast, etc. Then you open the curtains a little more – this is like increasing the volume of the cochlear implant. The window blind, behind the curtains, is pulled up a little so you can see more outside. Opening the blind is like increasing the IDR. You gain a wider range of sight and can see more objects, which get clearer the more you look at them. Or, you can hear a wider range of sounds and the more you listen, the more distinct and individual they become.

ClearVoice is an amazing additional program which automatically softens background noise so I can hear speech. I like using ClearVoice high on the London streets and train stations. Today I used it in the office as we had roadworks outside and the loud drill was horrific – my poor colleagues had headaches but I just flipped a switch. *grins*

I had another hearing test and showed a slight improvement. It’s amazing – and very surreal – to have continually improving hearing!

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The lines on the audiogram show my hearing, from the bottom line up;

1: Black line: February 2010, before my cochlear implant

2: Green line: April 2010, 2 weeks after switch-on

3: Blue line: June 2010, 3 months after switch-on

4: Pink line: August 2010, 5 months after switch-on

Although I now have good hearing, my brain cannot process all of this information. It’s too new and too much data. I’ve been very deaf all of my life and this new information is not going to get sorted and filed in a matter of weeks! The likely timeline for optimum performance from a cochlear implant for a born-deaf candidate is 2 years. It is hard to watch other people do so well so quickly, but this is why I celebrate every little milestone – because it IS progress, and a snail can win the race just as well as the hare – it just takes longer.

I’m picking out the odd sentence or even paragraph in my audio book. In real life – much harder – I’m starting to pick out a few words here and there. I went shopping last weekend and asked the assistant if he could unlock the changing room for me. He said ‘Follow me’, unlocked the door, and I thanked him. He replied ‘You’re welcome’. As is often typical for a hearing person, he had not been looking at me when talking. Yet I managed to understand what he said. I was thrilled! I’ve heard people say ‘Excuse me’ when they shove move past – not something I’ve heard before either.

Last weekend, I took a train and on the hour long journey, I had great fun listening to all the announcements, to see how much I could understand. I could hear about 70% of them. I met a friend in a noisy supermarket cafe and had no problem having a conversation with her (unthinkable in my hearing aid days). I then caught a train back, on a different network, but the announcements were not as loud or clear. Today, I’ve been able to hear quite a few of the announcements on the London underground.

I’ve been practising using the phone for a week or so. The success of this varies according to vocabulary, clarity of the speaker, tone of voice, accent, type of phone being used, background niose ….. so this is still quite a hill I have to climb. I’m starting off with very simple sentences rather than conversations.

Our cat Hussy miaows all the time. She cries for food, attention, whatever. In 2 years, I have never heard her miaow. A couple of days ago I saw her come up to the doorway and this huge MIAOOOOW smacked me between the eyes. Or should I say, between the ears. I was stunned; the loudness and clarity took my breath away.

I haven’t been able to hear the smoke alarm for a few years and when the placement officer from Hearing Dogs came to visit a couple of weeks ago, she tested it for Smudge. EEEEEeeeeeeeEEEEEEEEeeeeeeeEEEEEEEeeee – it is a totally disgusting sound! Other surprising sounds in the home have been the extraction fan and bolognese sauce bubbling on the cooker.

Last week I went for a drink and sat outside talking to a friend at a pavement café – again, unthinkable with hearing aids. It was on Goodge Street which was very noisy indeed with rush hour traffic. With my cochlear implant, I had very little difficulty following the conversation. I was prompted to put my hearing aid in my other ear – not having looked at it for months – and was assaulted by an indescribable wall of loud meaningless sound. I thought a number of police sirens had suddenly started somewhere but there was just ordinary traffic. Nothing was clear and all the sounds were blended together. After a minute I took it off and I had a thumping headache. My head felt as if it had been kicked really hard on the hearing aid side, it actually throbbed with the pain.

It’s been an interesting 5 months. I’m hearing sounds I never realised existed. I’m enjoying sounds I’ve never heard before. I’m feeling so much less stressed with communication. I do have ‘off’ days when I feel as if life is too loud, or I only have half a head of hearing. It’s early days though and this will go away in time.  I’m so glad I took the road less travelled, I’m starting to reap what I and the medical team have sowed, and actually, I’m thinking of getting a second cochlear implant. Hell – I’d get a third if they could find somewhere to put it!





Music makes my heart sing

19 06 2010

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!





Cochlear implant mapping

4 05 2010

I’ve had 5 “mapping” sessions since activation. A mapping is a reprogramming of the cochlear implant, to readjust the electrical stimulation limits of the electrodes as each user’s brain adapts to sound and fibrous tissue grows over the internal implant. Mappings are typically carried out once a week for the first 6 weeks, then every few months, then twice annually.

At each mapping I was given increased volume and it was an opportunity to address any concerns with the audiologist. This was followed by a coffee break in the hospital cafe then a speech therapy session. I have one more mapping session this week, then my next one is in June when I have my 3 month check.

It’s been a rollercoaster ride. I’ve started with beeps and pushed so hard that I got a constant whine when I put the implant on. This set me back and I had to slowly build up my tolerance again of high frequency sounds from zero, bit by bit, and have successfully avoided a reocurrence of the whine. I have not yet reached full volume, there is still some way to go, which is kind of scary. I found last week quite difficult as everything seemed too loud and I started feeling stressed, but I hung in there and carried on wearing the cochlear implant until I got used to the increased sound levels.

Increased sound levels can be problematic for cochlear implant users because they are more sensitive to loudness changes. A normal hearing person can hear a wide range of sounds from very soft whispers to loud rock bands; this dynamic range of hearing is about 120dB (normal speech is within the 40-60dB range). However, a cochlear implant processor’s input dynamic range (IDR) or sound window is limited to an electrical current of 20dB, and 120dB of sound needs to be compressed into this. Therefore the cochlear implant user is more sensitive to changes in loudness than a hearing person.

If the IDR is small, sounds outside the IDR need to be omitted or compressed; sounds that are too quiet will be cut off, and sounds that are too loud will be compressed and will sound distorted. The 3 main brands of cochlear implants have different IDRs; Advanced Bionics has 80dB, MedEl 55dB, and Cochlear 45dB but with autoranging. I currently have my IDR set at 60dB.

What actually happens in a mapping session? I replace my processor’s battery with a direct connect input lead to the audie’s computer and put the processor back on my head. (Yeah, this freaked ME out the first time I did this).

The audie’s software will reprogramme my implant’s Harmony external processor.

My cochlear implant has 16 electrodes and when each one is stimulated, I will sense each stimulation as a beep.
The audie will set the Threshold (T) levels [to access soft speech and environmental sounds] and Comfort (M) levels [the amount of electrical current required to perceive a loud signal] for each electrode by judging the most comfortable and the highest stimulation I can tolerate – the most comfortable and loudest beeps I am happy to listen to.

I use the loudness scaling chart to indicate to the audiologist which level each stimulation correlates to, ranging from ‘Just Audible’ to ‘Too Loud’.

Then the audie ensures the M levels are similar in terms of my perception, so that the volume is the same in each electrode – I was able to tolerate very high levels of high frequency sounds this week but she brought these back down, otherwise everything would have sounded weird and unbalanced.

This mapping method is rather tedious and drawn out over several months. Clarujust is new software (currently in FDA trial) from Audigence Inc where the patient and processor are interfaced to a computer and words are played and repeated as heard, the software adjusting the map accordingly. Mapping this way reportedly takes 30 minutes. This software can be used by all hearing aid and cochlear implant companies except Advanced Bionics, however Phonak signed up with Audigence Inc this year prior to the Advanced Bionics/Sonova acquisition.

When a mapping is new, it tends to sound louder, until I get used to it. It takes 3 days to get used to a new mapping, then I find loud sounds have become softer and more tolerable, and I can hear a wider range of soft sounds. It is uncomfortable turning up the volume of life to the max every few days. I still have to brace myself for the jolt first thing in the morning, making the transition from complete silence to a full technicolour river of loud sounds pouring into my brain. Amanda’s Tip of the Day: If you wake with a hangover, take your time to put on your CI and turn down the volume. It helps. A little.

It’s an amazing learning process as I am also trying to identify sounds as well, discovering amazing new ones, and learning to discriminate between things that sound similar to me. My hearing is like a baby, it needs time to learn and grow, but it can be fun too.

Erber’s model set forth 4 levels of auditory skill development;

    Awareness of sound (presence v absence)
    Discrimination (same v different)
    Recognition (associating sound/word with meaning)
    Comprehension (using listening for understanding)

I have now reached the second level, I am hearing things but finding it difficult to discriminate between some sounds. Obviously, this means I am still lipreading. In my speech therapy session this week, I discovered I can’t distinguish between Gear v. Dear, tIme v. tAme. I can listen and fill in a word missing in a written sentence, but listening to a whole sentence and being given one written word is more difficult. With hearing aids, both tasks would have been impossible.

In addition to mapping, my progress is occasionally evaluated with an audiogram and speech perception performance with the cochlear implant in a soundproof booth. These tests assist the mapping process and indicate any further adjustments required. I expect I’ll have this done this week, and hope to have improved upon the 18% I achieved in my last speech perception test.

I was programmed with ClearVoice last week but am still adjusting to my new mapping, so I have just been ‘tasting’ this wonderful addition. I tried it on the train; the roar of the train engine and clashing sounds (brakes or pressure pads? – haven’t worked this sound out yet) dropped away significantly and I could clearly hear voices around me. It was awesome. Yesterday, I was sitting by a window and became conscious of this sound. I realised it was the rain spitting outside. In the garage, I could hear the drumming of the rain on the roof and the traffic outside. With ClearVoice on, the traffic became very quiet and the rain became a very clear high PLINK PLINK PLINK, and a lower PLONK PLONK when it came through a hole in the roof and landed on an object. Again, awesome!

Try out the ClearVoice demo for yourself. Don’t forget to say the mandatory WOW!

Shanti is waiting for her cochlear implant operation date and works as a personal trainer and complementary therapist. She gave me a super aromatherapy massage yesterday and I left feeling very relaxed. As soon as I left, I plugged into my iPod and was amazed to hear that the tinny / Donald Duck tone of vocals had gone from a lot of songs. Perhaps there is a link between relaxation and better hearing. Today, voices sound largely normal and it’s so so so NICE to have some normality again!

Photos courtesy of Byron