Dancing into a new life

29 03 2010

It’s been four days since switch-on and my bionic hearing is changing quickly. On Wednesday, I was able to detect a few sounds but they were all beeps. I started to pick out people beeping around me like little birds, items being banged set upon my desk, pages being turned in a series of beeps, the phone ringing in a beep. I had been given three levels of sound on my processor, which was expected to easily last me until my next visit to the audiologist’s, in five days time. On the second day, the volume of the beeps was getting quieter and quieter, and I kept increasing the sound. I started to detect my work colleagues’ voices, with an accompanying beep. I was able to detect a glass being filled with beepy water and draining down the sink’s plug hole, a kettle boiling in mini beeps and switching off with a ping, a crisp packet being beepily rustled. I was getting rather beeped off!

By Thursday evening, I didn’t have any more volume to add on my processor and I didn’t want to wait until Monday’s audiology appointment and miss out on any progress. So there I was on Friday morning, banging on my audie’s door, and she gave me a big increase in sound levels on the processor. She can’t believe how fast I am progressing and has told me to slow down, that my brain needs time to take it all in or I might hamper my progress. She thinks it is because I have done so well with my hearing aids that my brain is very well developed at listening so is able to make sense of the new cochlear implant sound more quickly. My audie said a lot of people take a month off after switch-on to relax at home and take in the new sounds, then they have a shock getting used to their usual routine when they go back to work. Considering I am facing a month of crappy sound whilst my brain adjusts, I reckon returning to work is the smartest thing to do. Just before I left the audie’s office, I realised she wasn’t beeping when she was talking to me.

*hurrah!*

It was Friday afternoon and I was back in the office. I was shocked to find that I could make out my colleagues voices without beeps over the top, their voices sounded distant, in high tones, but I could make them out. It was happy tears all round and a very emotional day. I was amazed that I was able to hear through a computer in my head.

I received a very kind gift from Patrice, Bob and Kirby – a pretty seashell for my New Ear Day, very appropriately reminiscent of a cochlea – and beautifully polished until it shone. I have spent the three days since activation working as normal and that means listening and taking in sound from clients all day, chatting to my interpreter, colleagues and friends, going to the usual noisy cafes for lunch. I think all this has really helped me to ‘acclimatise’ to listening through a computer. It was wonderful to hear a voice and not a beep, and it really helped with my lipreading – which I found a lot less stressful.

Voices now sound quite weird as my brain adjusts to the new sound, and I am having great difficulty understanding what is being said today. I expect to go backwards sometimes as I adjust but to carry on moving in the right direction. I can see that there are so many different shades of hearing. Moving from silence, to sensations or beeps, to detecting some environmental sounds, detecting voices and life around me, moving on to comprehending sounds and then – finally! – understanding speech. My Holy Grail is to understand speech without lipreading. A bonus gift would be to enjoy music. I’m on Advanced Bionic’s HiRes-S with Fidelity 120 program and will get an additional program in May 2010 called ClearVoice, which is revolutionary in having the ability to reduce background noise or the ‘cocktail party effect’. So now I have my goal in sight.

My sound database is now constantly being populated with a drip-feed of familiar, new and sometimes surprising sounds. Familiar sounds I can now hear are the dog barking next door, cars passing me, and sometimes footsteps. When I walk through a busy place such as the cafe in our office building, I don’t experience the usual wall of indecipherable echoey loud white TV noise that hurts my ears and makes me want to scream very loudly, but instead I detect the quiet chirping of people’s voices. (I know from Amanda, the cutlery will become my new sound from hell). At the moment my window of sound is still quite small, because I would not be able to cope if the audie let me have it all at once. It is a mountain that I have to climb slowly, take a rest now and again, acclimatise myself bit by bit. So at the moment, I am only able to hear high frequency sounds that are not too far away from me. I have tried listening to my iPod and music sounds absolutely rubbish, however the volume is set much lower (my hearing aid required the maximum iPod setting and hearing aid setting). I’ve bought my first audio book, Harry Potter’s first book, and find that very hard to listen to as the sound makes no sense – what I am hearing sounds like a long wail with gaps. But I’m holding the faith! Here’s why ….

New sounds from my cochlear implant are the Blackberry / Mac / remote control keys clicking, cutlery on plates, plastic bags rustling, scissors cutting plastic, clicking fingers, bus doors thumping shut, my dog panting and whining (he sure whines a lot!), using an eraser, the bathroom door lock and light clicking from the room next door, the doves and pigeons making a racket in my chimney, my own breathing and sniffing, zips, Amanda’s jaw cracking every time she opens her mouth – all these tell me that the cochlear implant is already outperforming my hearing aid. And it’s only been FOUR DAYS! I am realising that when something moves, it makes a sound. The first sound I could hear clearly, sounding normal and without any pesky beeping, was my shoes scraping on the tarmac when I walked my dog yesterday morning, and I took great pleasure scraping my shoes (and dancing) all around the park. Unfortunately, I now need a new pair of shoes.

I am amazed that I put up with such crappy hearing for so many years.

Bye bye, Crappy Hearing Aid.

Hello, ‘Borg with new shoes.

New, polished, and shining with pride. ~ Come dance with me!






Deaf = not old and boring

11 02 2010

Check out this new hearing aid concept from Designaffairs Studio in Germany. It’s different, unique, and very refreshing. Perhaps too innovative for some, though. This hearing aid is plugged into a large hole in the earlobe. Eww. They have designed an additional plug to add extra amplification.

At least some designers are heading in the right direction, they have the right idea – hearing aids are not just for old people, are they?

The RNID have come out with some new figures. They said the current 9 million deaf and hard of hearing people in the UK will increase to 13 million by the year 2014, due to an ageing population and the iPod generation becoming deaf. Scary figures. I’m expecting hearing aid designs to be revolutionized. Hearing aid design today is all talk and no action.

My personal opinion – I love the idea but I would not want to put a big hole in my earlobe. I would happily wear as this as an earring though. Good for the girls, not so good for the boys.

Images: Designaffairs





Look! Look! LOOK!

7 02 2010

I guess a lot of people wonder what a cochlear implant looks like. This photo is of the CI made by Advanced Bionics, it is the same as the one which I am getting (and the same colour). The CI comes in two parts; one internal, one external. On the left is the internal part; the larger disc (1) houses the computer technology with a ‘tail’ for the electrode array, the smaller disc (2) is the magnet which is removable for MRI scans if needed. On the right is the processor. The processor (3) is the part that is updated with new software by the audiologist. The battery (4) is rechargeable and I will get a set of 4 batteries so I can rotate them each night – a battery charge will only last a day. The processor is connected by a wire to a magnet (5), which has an orange cover in this photo. I’ll be supplied with a set of covers in interchangeable colours to jazz up my CI or to match with my outfit. Advanced Bionic’s CI microphone is patented, which means no other CI manufacturer is able to produce a similar microphone. This is called the T-Mic (6), and is situated at the end of the ear hook to mimic normal hearing at the entrance to the ear canal, rather than at the top of the ear as in hearing aids and other CIs.

The external magnet connects to the internal magnet through their placement, creating the connection for processed sound to reach the auditory nerve. Here, they are placed similar to how they would be on a real person …

Putting it on, it is a little bigger than my current hearing aid (Oticon Spirit 3 SP) and about the same size as my last pair of hearing aids (Phonak Supero). I pulled my hair back for this photo but my CI will be hidden by my hair.

And if you’re bald or have very short hair? There’s nowhere to hide – but should you be hiding? Meet Scott, who says “It rocks my world every day”.

It’s probably like having a hearing dog – a few people stare but more people are lovely, they come up and talk to me and ask questions, they show an interest, they are aware of my hearing loss and make the effort to look at me and speak more clearly. I’ve made lots of friends this way. It’s helped me to stand up tall and spit in the face of deafness.

For some, it’s a choice between vanity or decent hearing. Hats? Wigs? Attitude? Two-fingers-up-at-the-world? Hmmm, food for thought. Fortunately, I don’t really need to make this choice, but if I had to make it, I would choose the opportunity of having decent hearing.





Monsters in my head

3 01 2010

I’ve had a sleepless night, worrying about the CI. I have just a few monsters in my head that won’t go away. Let’s get them out into the light of day, in order of size, biggest monster first ….

The implant won’t work as well as my hearing aid.
My biggest worry, and probably my most unreasonable one. I don’t believe it will be a magic wand and give me perfect hearing, but I don’t believe it will work that well for me as I’ve always been deaf. I keep reading about recipients who have done brilliantly but they have had hearing for some years before losing it, giving them a massive advantage over me. It’s a leap of faith and I don’t do faith. I don’t do religion. I believe in what I can see evidence of, so taking a risk like this is a biggie. Also, will my surgeon, Dr Lavy, be having a bad day and be ‘off’? Will my CI be one from the production line, not discovered to be defective until switch-on? Will they find out at switch-on that not all the electrodes work?

I am going to lose all my hearing in my left (implanted) ear.
I can hear *something* in my ear, which helps to balance my right ear, and makes me feel what I am hearing is normal as can be and balanced. I really don’t want to lose anything at all. Hearing only out of one makes everything seem skewed, and I feel like I am on drugs. It makes everything a lot harder to understand. So I am already mourning for the loss of the hearing that I still have. I might be able to retain some residual hearing, depending on which CI I opt for, but I feel that the operation will pretty much take away whatever hearing is left.

The anaesthetic.
Not that I’m going to die. might die. It’s about letting someone else pump such a strong drug into me. It’s about the going under. It’s about having someone close to me, my dad, who went under and never woke up, I still think about that every day. It’s about the sheer horror of it.

What the world will sound like Afterwards.
Not nice. Not normal. Will it ever be normal or nice again? Will I be able to enjoy music again? It’s 22 electrodes compared to 15,000 hair cells in a normal hearing ear, that difference in quality of sound really freaks me out. 22 will sound crap to a hearing person, but hopefully it will sound brilliant to me, coming from the other end.

Having a huge lump of plastic and a magnet on my head.
It will be bigger than the biggest hearing aid Ive ever had. Hopefully I can hide it with my hair. Hopefully I won’t hate wearing it. Hopefully it will stay on my head ok without me constantly having to flip it back behind my ear. Or I could decorate it and make it pretty, kind of like a badge advertising my hearing loss in the same friendly way my hearing dog does.

Facial paralysis and loss of taste.
Dr Lavy will use a monitor during surgery that beeps if he goes too close to the facial nerve so I am pretty sure I won’t come out looking like I’ve been liquified in Photoshop. But still…… and I LOVE my food, I don’t want it to taste weird or to taste like cardboard – but hey, I can stand to lose a few pounds!

Enough batteries to have my own landfill site.
I will have to think about batteries every single bloody day. Not just once a month when it runs out with a beep-beep-beep-beep and another hour or so until it dies. It will just die instantly. It will not last me a full day. I will have to remember to recharge batteries every day – at least everyone will always be able to tell when I’ve been out on the lash the night before and have been too drunk to remember to put batteries in the charger – I won’t be able to hear properly next day! If I go for disposable ones, I’ll have to make sure not to run out. But then again, this one is a bit like remembering to get food to feed the dog. Sorry, Smudge :-O

My hair will fall out.
This one probably seems stupid to all you guys reading this. Ladies, you probably understand. I have a real hate of having dirty greasy hair and wash it every day. I don’t think I can wash it for maybe a month afterwards. It’s going to look gross but I have a strategy for that – I am going to buy a buff or choob from Blacks and wear that during the day. Leaving my hair to get this dirty and greasy makes me think it will just slide out of the hair follicles …. ick.

Getting home after the operation.
A tricky one when I have no family around me and everyone else is at work. Plus I hate to ask friends who have a million better things to do. My interpreter has offered to come and take me home, however she lives in Kent and will have to drive right across London to the hospital, across London again to take me home, then across London again to get home herself. I could go on my own but will probably fall down a tube escalator while crying my eyes out, haha. The last time I had anaesthetic was when I had teeth out to make room to straighten the others. I was very dizzy afterwards, kept falling over, and couldn’t stop crying. Apparently the crying was a natural reaction to the drugs. Or I could stay overnight in hospital….. yuck.

So there you have it. My own little book of horrors. I’m shutting them back in the cupboard – for now.





New hearing aid technology

2 12 2009

Canadians have invented a new hearing aid technology.

Hearing aids have come a long way since the trumpet. Current aids amplify sounds and are not ideal, they don’t give the wearer back their hearing, they just give some sound which might give the brain enough useful information to help decode incoming sounds.

A new type of hearing aid has now been developed by Vitasound. The neuro-compensator aid works in a different way. It has a microchip which transmits electrical signals to the brain, resulting in a more natural and complex sound signal. The neuro-compensator is based on the cochlear implant model, mapping the damaged areas of the ear and compensating for them.

I’ll be asking my audiologist about this. It looks a bit flaky. (I’m so cynical!) Further details available here.

It’s ironic that they didn’t think to caption the videos.





Let’s get borgerised!

2 08 2009

I’ve never been keen on the idea of joining the cyborg crowd. A friend told me of her experience and this got me considering the idea more seriously. Martine was about the same age as me and, like me, had always been deaf. She received her cochlear implant a few years ago in Belfast. Six months after the operation, she decided to try her hearing aid in her other ear to compare it with the CI. She was stunned by the huge difference in quality of sound and binned the hearing aid. What you don’t have, you don’t miss! Last month I asked my doctor to refer me for a CI assessment. I thought there’s no harm in finding out more, perhaps they will tell me I’m not deaf enough for a CI or that it will be a benefit to me.

My first hospital appointment was with the speech therapist Liz. She told me about the procedure and of the risks involved. This CI centre has put 600 people through the procedure over the last 25 years, of whom 50 are non-traditional CI users, i.e. those who have always been deaf and have no or few neural pathways to make sense of new sounds. The operation is a few hours long and the patient goes home the next day and needs to take 2 weeks off work. Switch-on is 6 weeks later. Rehabilitation, making sense of new sounds, takes a few weeks for most patients. For non-traditional patients like me, rehabilitation takes up to 2 years. The benefits also are not as great for non-traditional users. Those who have previously had hearing, can use the phone and hear without lip reading. Non-traditional users won’t be able to use the phone and will still need to lip read, however a lot of the strain is taken out of lip reading. There are some risks attached to this procedure, as in any operation. Patients need vaccinating against meningitis before the operation, as the skull is opened up and exposed, posing a greater risk of catching meningitis. There is a risk of facial paralysis, but Liz was very confident this wouldn’t happen, as the computer beeps when the surgeon gets too near the facial nerve and he just moves away. There is a risk that the CI won’t work, but it can be replaced. The procedure is irreversible, I wouldn’t be able to go back to wearing a hearing aid as when the CI’s electrodes are implanted, they are inserted right into the auditory nerve in the cochlea and destroy all the hearing in that ear.

Liz then gave me a CI to look at. It is huge! It’s much bigger than my hearing aid. And it’s ugly.


Source: Wikimedia Commons

The part that sits behind the ear, and unfortunately looks just like a hearing aid (why oh why can’t designers come up with something cool to wear?), houses the microphone, the speech processor (which can be updated), and the battery. The round bit that sits on the head is the magnet. This connects via an electromagnetic field to a magnet inside the skull linking to the implanted electrodes. Up to 24 electrodes (or channels) are implanted to give enough perception for the speech frequencies, compare this to the 15,000 hair cells in a normally hearing ear. Sound won’t be heard as a hearing person would. A few of my friends have had CIs recently and the first thing they said was ‘Everyone sounds like The Clangers!’.

The House Ear Institute has demos of what a deaf person hears through a cochlear implant. I’d love to hear your thoughts.

My next appointment was with the audiologist. I was told that some people are disappointed with their CI because they had very high expectations. A CI does not replace hearing, it is just a very powerful hearing aid and works in a different way to a traditional hearing aid which utilises your residual hearing. It’s not a magic cure, and you can only work with what you’ve got. I was told that I’m certainly within the hearing loss range for a CI but that I’ve done extremely well with hearing aids, so that could work against me. So can’t this effort with hearing aids be transferable? Hearing with a CI will mean that everything will be very loud to a person who hasn’t heard for a long time, like coming out of a week in a dark room into bright sunlight. It hurts and it’s overwhelming. I was given the standard hearing tests and finally a word test. The computer spoke about 12 sentences and I had to listen and repeat. No lip reading! The audiologist said I am likely to score zero and not to worry. I said I’m going to guess, if that’s ok with you. The look on her face was priceless when I scored 52%. Um. They should have used single words, and not sentences! Then I would’ve scored zero, with no grammatical clues to work out what’s being said.

Last week I went to see the consultant surgeon. Just prior to that appointment, I found an audiogram at home, dated 1997. It showed quite a different hearing loss. I hadn’t realised that I had lost so much hearing since then, I’ve lost 30 decibels. I took this audiogram with me and gave it to the surgeon (some dumbass hospital somewhere had lost all my medical records). His opinion was that I am certain to need a cochlear implant in ten years time as my hearing is deteriorating so much. I’ve barely noticed, but then I don’t listen, I don’t use the phone, I look and lip read all the time. So the question has now become one of when, not if. I don’t really have much choice. It’s going to be total deafness or a cochlear implant – forget the hearing aid.

This has suddenly become a lot more scary.

I’m very curious about the development of a new and superior cochlear implant which was reported in 2006. Maybe I should wait?

More updates soon. The next step is a MRI scan on Friday. Some shut-eye time!





Bone Anchored Hearing Aids (Baha)

15 04 2008

I asked Lyn, Chair of Baha Users Support and Honorary member of The Baha Professionals Group, about her Baha hearing aids. Here she very helpfully explains what a Baha is and how it differs from an air conduction aid – which I’m guessing most of us wear as the BTE (Behind the ear) is what I see most people wearing.

For me, having Bahas means the difference between having no useful hearing, to having hearing that “is” useful.

Putting my Bahas in on in the morning is like opening double windows to sound.

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Like all aids they have their limitations, the range of sound is not “normal” but it enables me to communicate mostly effectively, assisting my lipreading.

I see my bilateral Bahas as offering me “effective” hearing for longer than I would otherwise have it, as my nerve hearing is now failing on one side. I cannot use any other type of hearing aid.

My middle ear parts don’t work, the middle ear consists of the ear drum and the little bones behind it. So the chain of sound is broken, there is nothing to carry the sound from the outer ear to the inner nerve part of the ear.

The Bahas are sound processors which attach to an abutment (socket) behind my ears. The abutment is held on to the skull by a tiny 4mm titanium screw fitted into the bone. A 40 minute minor surgical procedure, usually a day case job under local anaesthetic (for most adults).

The Baha can be used as a regular bone conduction aid in children from a few weeks, or attached to an elasticated material headband called a Softband.

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This enables use from an early age without causing any deformity of the young bones, as happens with the usual headband type. The implant can be fitted when the child’s skull is mature enough.

The sound processors pick up sound, convert it to vibrations (as would normally happen with the middle ear parts), the vibrations are carried to the skull bone via the abutment and tiny titanium implant screw.

Bone is an efficient conductor of vibrations, and the vibrations are carried directly to the cochlea (inner nerve part of the hearing mechanism).

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Some people can be profoundly deaf conductively (due to middle ear problems) but can have perfectly working nerve hearing parts. So the Baha is a very effective “middle ear bypass”. The better the cochlea function the better the benefit from the Baha. Only an assessment by audiologists trained in Baha can tell if a person is suitable and can benefit – the Baha is available on the NHS, though the funding is very inconsistent round the UK!

It can also help people who are single sided deaf, even if their deaf ear is nerve deaf (as in post acoustic neuroma surgery). The Baha enables sound to be picked up on the deaf side, and the vibrations are heard in the working nerve on the opposite side of the head, offering a “sense” of bilateral hearing.

Mostly the Baha is fitted to people who can benefit, and who are unable to use air conduction aids.

This could be due to deformities of middle or outer ear parts, or in many cases due to middle ear disease / infection where there is damage to the little bones and no hope of reconstruction surgically (as in stapedectomy).

Also people with middle ear disease / infections can have their problems made worse by blocking off the ear canal with air conduction ear moulds.

I personally could only wear my air conduction aid for 20 minutes before the middle ear would start weeping. So I kept it in my handbag, and only put it in when I “really” needed it…. because of the middle ear destruction the air conduction aid did not offer me very effective hearing anyway.

Now my Bahas offer me 24/7 optimal hearing. Hearing that is consistent, even if I have middle ear infections.

Thank you for “listening”. Lyn.

* Pictures courtesy of Cochlear, the manufacturer of the Baha.





Arrghhh

8 04 2008

I guess there’s gotta be a first time for everything.

I was in the wee room and heard this noise, just before I pressed the button on the wall. It sounded like I’d dropped something. I looked and saw this funny shaped thing in the water. It looked like a brown crescent moon, with a bit of red on the end…. it looked kind of familiar… and then I realised….

I had just accidentally dropped my expensive digital hearing aid …. all £2500 of it … into the toilet.

Arrghhhhhhhh.

I’m hoping it’ll be ok after it’s little swim.

There’s nothing I can do except wait. And worry.





Deaf Dom Joly?

30 01 2008

Darren went to the hospital yesterday for his new hearing aid to be fitted – what do you think? He’s sure no one would notice it – he says it’s got great volume control!

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Another new sound

10 01 2008

I’m still picking up new sounds, even though it’s been a year since I was fitted with my current digital hearing aids. I walked into my office and could clearly hear this loud bubbling sound.

WTF?!!

I looked around for a leak on the ceiling or walls – nothing. It was coming from the wall radiator which was boiling hot. I realised it was filling up and this was the source of the sound. A first for me – I’ve always had to feel around the radiator to see if it was warming up. It’s nice not to risk burning my hands now – an unexpected side benefit of wearing hearing aids!