Friday, 27 November 2009

Preparing for Surgery

Just to let everyone know that my surgery consultation on Wednesday went better than expected. Judging by the MRI and CT scans my cochleas are in good shape with very little ossification (bony growth - often happens as a result of meningitis and would have meant a complicated surgery - so it's a VERY good job that this is not the case!)

I have decided to be implanted in my profoundly deaf right ear - the one which has benefitted from a hearing aid for the best part of 20 years. The main reason for this is because the hearing nerve will already be stimulated and my rehabilitation process will be a LOT quicker than if I went for my fully deaf, unstimulated left ear. There are other, personal reaons too, but I will update about this when I have more time to reflect. (I'm taking a notebook into hospital with me as it's very unlikely I'll get any sleep tonight!)

So... at 4pm this afternoon I will be checking into a private hospital (lucky me!) in Nottingham where I will be all set up for my op at 7am tomorrow morning. Early huh?!... hope the surgeon has had his morning coffee by then :| So if all goes to plan I should be stitched up and home by Sunday afternoon :)

I can't believe that last night will be the last time I hear music as I know it.

Monday, 23 November 2009

The Harmony Processor

It appears there is a bit of confusion amongst my friends as to where the "round bit" goes. (No it doesn't go in my "ear hole"! :P) It is a magnet, and it sits on my head like so:

This headpiece is what connects the external sound processor to the implanted part, which will be surgically positioned beneath the muscle, tissue and skin on the side of my head. The implant looks like this:

The implant (A) is what receives sound information from the external sound processor, converting them into electronic signals and sending them down the electrode array (B), which will be inserted into my cochlear.

I hope this helps make things clearer to understand. Any questions please don't hesitate to ask and I will try my best to answer!

Sunday, 22 November 2009

Choosing a System

There are only three manufacturers of cochlear implants worldwide. At my assessment centre, I was given the choice between two : Advanced Bionics and Cochlear. Although Cochlear were the first company to pioneer CI technology and have recently made vast improvements to the aesthetics of their latest processor, they have not updated their software in a DECADE. Advanced Bionics on the other hand, have been an industry leader in CI technology for sixteen years, ever since they came onto the market.

I have to admit that I was initially tempted by the sleek, lightweight processor offered by Cochlear (it looks like a descendant of the iPod!). But after weeks of thinking, reading and researching I have eventually decided to opt for the larger, less attractive AB Harmony HiResolution Bionic Ear System.

The reason for this is simple - how the sound processor looks will undoubtedly change over time. (Cochlear are AB's main competitor, so they have no choice but to challenge their aesthetics). What matters most is the technology on the inside and what it is capable of allowing me to hear. At the end of the day, how well I can hear with a device is far more important than how good I look wearing it. (image below - colours are changeable!)

Here are just a few of the things that swayed me towards Advanced Bionics:

The actual implant (internal component) is capable of so much more than the external processor. The current sound processor (Harmony) only utilizes 25% of the implant's full potential, leaving room for future technological improvements which are being made all the time. AB has a commitment to innovations in hearing science, proven by the fact that they are the manufacturers of the most technologically advanced CI system in the world.

AB's Harmony processor captures the widest range of sounds (from soft to loud) of any CI system. Where other systems (Cochlear) have an Input Dynamic Range as narrow as 30dB, Harmony is able to capture a window of sound up to 80dB wide.

Built-in AutoSound automatically adapts to the changing environment, just like a normal hearing ear. HiResolution technology offers five times more resolution than any other CI system. Just like with a digital camera, the higher the resolution, the more complete the (sound) picture.

Both of these things make for a fast stimulation rate, meaning that pitch and timing of sound can be delivered with more accuracy. This is not only beneficial for speech perception, but also essential for music enjoyment - something which is quite important to me. (Unfortunately music is often a disappointment for CI users, a topic I will discuss further in another post).

If any of us needed any more convincing, check out the following results of an independent study (click to enlarge):

I can't tell you how relieved I am to have finally made this life changing decision!

Saturday, 21 November 2009

One Month Later

Four weeks later I am almost at the end of the assessment process - I was originally told it could take up to 18 weeks! This all seems to be happening so fast I've barely had time to stop and take it all in, let alone choose which device I want to be implanted with. Well... it looks like I'll have to get a move on because I'm booked in for surgery next Saturday 28th. Yes, that soon!!

Before I do this I want you all to be aware that having a cochlear implant is NOT some kind of miracle cure for deafness. I will still be deaf - I will just be implanted with a device which will hopefully allow me a higher definition and range of sounds than a hearing aid does. Think of the difference between VHS and DVD and this probably goes some way to explaining it... HOWEVER, there won't be a sudden drastic improvement in my hearing. It could take weeks, months, years to get used to the difference in sound quality. One of the major changes for me (and indeed many other deaf people) is that even with a hearing aid I have never been able to perceive very high pitched sounds... I can hear a door shutting but not a fire alarm going off at full volume..! Post-implant, I have been told to expect an experience similar to that of this CI user:

"I had been missing high-pitch sounds for so long. Now that I heard them, they tended to overpower the low-pitch sounds coming into my brain. The result was that everyone sounded like Donald Duck."

Humorous as this may sound I think it could get annoying after a minute or two(!) Generally what happens is after a few weeks the brain sorts out a sense of balance and voices begin to sound more normal again. Basically I have to be patient and not be tempted to turn the sound processor off if the noise is uncomfortable or frustrating for me, which it most likely will be, in a lot of situations. The level of success I get out of my CI will ultimately depend on how much effort I put into listening with it. Technology alone will not restore my ability to hear. It will take a combination of time, patience, therapy and practice for my brain to adapt to this new way of hearing.

In the long run, I hope to gain improved speech perception and be better able to distinguish one sound from the next in a noisy environment. Both of these things will hopefully aid conversations in group situations or where there is an element of background noise. I hope to be able to ease off on the lip reading and not have to concentrate so hard to understand voices (both familiar and unfamiliar). I don't want to expect too much and risk being disappointed, but I think that even just a small improvement in these areas will make a big difference to my quality of life :)

Before this though, I first have to deal with the 4-6 weeks of complete silence following my operation, possibly even over Christmas and New Year :| Hey, at least this means I won't have to listen to the annoying singing Santa my dad insists on putting in the hallway!! I have to wait until my wound has completely healed before they can activate the technology, and unfortunately I won't be able to use a hearing aid in the meantime (or ever again) because the surgery is likely to destroy whatever acoustic hearing I have left. This is just a sacrifice I have to make in order to benefit from the CI.

To all my friends - please come and visit me during this time, please drag me out of the house. I am going to need a lot of support because knowing me I'll go out of my way to avoid social situations and end up getting depressed at the lack of social contact :| So please keep in touch, but be aware that conversation may be difficult so don't expect to be having elaborate discussions! Your company will be enough :) For those of you who are interested, I would love to share with you the basic sign language skills I have learnt. I don't know much, but a little knowledge and awareness really does go a long way in communicating with the fully deaf.

So, one week to go... wish me luck!!

Saturday, 24 October 2009

My First Appointment

Yesterday morning my mum drove us the 50 miles to Ropewalk House in Nottingham for my first appointment with a member of their Cochlear Implant Team. Here I met with senior audiologist Ellen Jeffs, who was to take me through a series of tests to determine whether or not I would be a suitable candidate for implantation. I have to admit I was still a little sceptical at this point, as I have always perceived cochlear implants to be for people who were born deaf and have never developed speech. Even though this viewpoint goes against all logical reasoning (I have recently met adults with acquired deafness who were implanted later in life) I still had this illogical voice in the back of my head... I think it was my cynical side telling me not to get my hopes up!

After going through the pre-assessment form I had filled in beforehand, the first test Ellen did was to look in my ears before 'plugging me in' to this machine that automatically checked the function of my ear drums. There was no problem here so we moved upstairs to a soundproofed room for the tests designed to measure my hearing.

We started off with the regular hearing test which I must have had a million times before, where a series of beeps with different tones and volumes are played to me through a set of headphones. This is always done without a hearing aid and I had to press a button to confirm when I had heard a sound. There was no change from the last time I took this test - which always shows a profound sensory neural loss with no measurable hearing in my left ear.

A smaller headphone-like device was then placed just behind my left ear and the same test was done again. I couldn't hear anything with this one so didn't press the button at all.

I was then allowed to put my hearing aid back in and was left alone in the room facing a speaker. Some environmental sounds such as a telephone ringing (I couldn't identify the others) were played to me and again, I had to press the button to confirm when I had heard. My mum had to leave the room as apparently some of these sounds are very loud to a normal human ear! I didn't think any of them were particularly loud and had to really concentrate to pick them out.

The next bit was quite amusing as I had to watch video clips of a man with no expression (which you'd think I'd be used to after years of education(!)) saying a number of different sentences. For the first set of these, the sound was muted and I had to try to work out what he was saying by lip-reading alone. This really made me appreciate the benefit of contextual clues and facial expressions as it dawned on me just how completely lost I would be without them!! Another set of clips were then played with their sound but I still missed more than half of what the human robot :-| was saying. Finally, the video clips were switched off and I just had to listen to his voice which made me laugh as it is clearly impossible that I would be able to pick out any of the words from the audio track. It was like having the radio on and being able to hear the sound but not make out the words. Or when my Granddad (bless his heart) took me and my cousins to see 'Black Beauty' at the age of eight and I sat there staring at moving pictures of horses for two hours completely oblivious that the sound over the top was actually supposed to be them talking! Lol! I honestly thought it was the most pointless film ever to be made!

ANYway... back to the assessment and my final test :) Ellen plugged me in (by the ears!) to one last machine that measured my brain's response to sounds. I didn't have to do anything here as the machine did all the work for me. We were then taken back downstairs to discuss the results.

Obviously these are not the kind of tests that a deaf person is supposed to "do well" in. As Ellen said, if I were to do well then I wouldn't need to be there in the first place! She said that the results showed I am definitely a candidate for a cochlear implant :) And as I already have a knowledge of sound, the rehabilitation process after implantation would be a lot quicker for me than for someone who has never heard a sound in their life. For this same reason she was 100% certain that I should be implanted in my right ear, as the hearing nerve has been kept stimulated through use of a hearing aid and would already be 'well trained' in receiving electrical signals and sending them to the brain.

On the one hand, this is a huge risk as I have got something to lose. If by any chance the implant didn't work for me, there would be no going back to a hearing aid. That would be it. I would spend the rest of my life in silence. This is a prospect that petrifies me, especially as I am not actively involved in the Deaf community and would be left with extremely limited human interaction. I have recently begun to learn British Sign Language, knowing there is a chance (albeit very small) that one day, this could be my only form of communication.

On the other hand, if I am going to go through this whole process of irreversible invasive surgery, I want to do it properly in a way that I stand to gain the highest quality of sound possible. If there is a much higher chance of benefitting from the technology in my right ear than in my left, then maybe it's a risk worth taking.

Here's the scary part... this could all be done by the 21st of January. :-O

The Scientific Bit

How Does Hearing Work?

Before you can fully understand how cochlear implants work, it's helpful to first have a basic understanding of how normal hearing works:

1) The outer ear collects sound waves that pass through the air.
2) The sound waves vibrate the eardrum and the three tiny bones (hammer, anvil, and stirrup) in the middle ear.
3) This vibration moves the tiny hairs of the sensory cells in the inner ear or cochlear; sensory cells convert the vibrations to an electrical signal that is sent to the hearing nerve.
4) The signal travels up the nerve and into the brain, where it is interpreted as sound.

When any part of this delicate system is damaged, hearing loss can result. For adults, hearing loss, whether sudden or progressive, can cause frustration, isolation, even depression. It can do the same to a child, as well as impact the ability to learn and speak, causing the child to fall behind in his or her development. But for people of all ages, cochlear implants may help end the isolation from hearing loss by bringing the world of sound back into his or her life.

What Is a Cochlear Implant?

A cochlear implant is an electronic device that allows many people who’ve experienced hearing loss to hear better once again. And for many who’ve never heard sound before, they experience hearing for the very first time. It’s a completely different, more advanced device than a hearing aid, which merely amplifies sound to make it loud enough for an impaired ear to hear.

How Does a Cochlear Implant Work?

Using state-of-the-art technology, a cochlear implant bypasses the damaged part of an ear and sends electrical signals directly to the brain via the hearing nerve where they’re interpreted as sound.

1) Sound is captured by a microphone on the sound processor (worn on the outer ear).
2) The sound processor converts sounds into detailed digital information.
3) The magnetic headpiece sends the digital signals to the implant.
4) The electrode array on the implant sends electrical signals to the hearing nerve.
5) The hearing nerve sends impulses to the brain, where they are interpreted as sound.

All information copyright of Advanced Bionics

Wednesday, 21 October 2009

Living With Deafness

I have not always been deaf. I was born hearing, but a meningitis infection at the age of 2 and a half years caused damage to the tiny hairs of the sensory cells in the inner ear (cochlear), leaving me with a profound sensory neural hearing loss in both ears.

I am lucky enough that I was able to benefit from wearing a hearing aid in the right ear. Without this, my experience of sound would have ended there and then, as would my capacity for speech. A hearing aid does not restore hearing (if only it was that simple!), it only serves to amplify sounds so that they MAY be detected by the few surviving sensory cells. Not ALL sounds can be detected, and as they are all amplified at the same level, they can be very difficult to distinguish from one another. If it wasn't for my acquired lip-reading skills I can safely say that I would not be able to understand speech at all.

Over the last few months I have noticed that I am no longer able to benefit from a hearing aid to the extent that I am used to. Suddenly everything sounds muffled, distorted, and surrounded by a constant strange buzz. The only way I can think to describe this is like a distant motorway in my ear... slightly distracting to say the least(!) It has got to the point where I would rather not wear my hearing aid at all, instead choosing to spend most of my time in complete silence. I cannot even begin to express how unusual this is for me - for 20 years I have been "switched on" more or less from the moment I wake up until the moment I go to sleep at night, so to change the habit of a lifetime indicates that something is seriously wrong.

Understanding speech has become such an effort that I have actually found myself avoiding situations where conversation is likely to take place with more than one person or with any element of background noise. As you can imagine this is having a hugely negative impact on my previously thriving social life. On the occasion that I do agree to attending a social event I struggle to enjoy myself and am left feeling even more isolated than I did to begin with. It really has become a bit of a lose-lose situation in that respect. To top it off, my iTunes has remained untouched for months!

So... This is the story that has brought me here, to the beginning of my assessment process for a cochlear implant. I hope this blog will allow you to follow me on my journey :)

Monday, 19 October 2009

And so it begins...

This Friday I will be embarking on my journey with the first of many appointments at Ropewalk House in Nottingham. I am excited about the possibility of life with a higher quality of sound, apprehensive about what a C.I could actually do for me, worried that I won't be an ideal candidate but at the same time, nervous that I will be! Could this be the start of a whole new world of sound? Am I ready for the change? I have coped with a hearing aid for 20 years... am I going to wish that I had done this sooner? There are so many conflicting questions flying around my head, I guess I'll never know unless I try. After all, "if you have nothing to lose, you can try everything".