Cyborg Adventures : Preparing to Jump

I went to the hospital for a repeat sentence perception test yesterday as I had scored 52% the first time and 53% the second time. 53% was just outside the criteria for a CI, so they wanted to make sure of my ability to understand speech just by listening. This time, I scored 43%, which put me well inside the criteria for a CI. I asked for a single word speech perception test, and scored 33% – that was an extremely difficult test to do, as there was no context for me to guess words from. I think single word speech perception testing should be used more to measure auditory functioning, as sentence testing can be deceptive. A person with good cognitive skills will appear to hear more than he or she really can hear.

The CI team kicked into gear and I met with the consultant, surgeon Dr Lavy and speech therapist Liz. The consultant was of the opinion that I am coping quite well with lip reading, but the CI will make a huge difference to what I will be able to do in other environments on a one to one basis.

I have been wearing hearing aids consistently and for a long time, so my ears hopefully have been stimulated enough so they should benefit. A lot depends on how I progress afterwards with the rehabilitation. The consultant reckons I will definitely be able to hear better with it than without, than I am now.

We discussed which ear to implant and chose my left ear. I prefer my right ear, which is the better ear, as I can understand conversations better and pick up on environmental sounds which the left ear completely misses. The CI would work well in both, potentially slightly better in the right ear, but it would still work well on the left side. With a left ear implant, I can wear the hearing aid on the right side. The medical team said not everyone can manage with both a hearing aid and CI as the sound can be so different, but some get on quite well. I’ve been advised it is best to keep wearing the hearing aid if I can, to keep the hearing nerve stimulated, and so keeping the door open for a second CI (or other technological aid) in the future. A second CI is not normally given to adults in the UK purely because of funding, they are expensive at £40,000 and a lot of people are refused a CI, never mind get offered a second one.

I then went to look at four CIs. I chose Cochlear’s Nucleus 5 which is the newest CI available. With a rechargeable sound processor holding 18 hours of battery life, the Nucleus 5 is 43% smaller than other CIs and features the industry’s most advanced microphone technology. The implant has 24 electrodes. Liz said the thing about numbers of electrodes is they are all more or less the same. She doesn’t think 22 is better than 16. How odd. She said there is no proof to show that any more than 8 is better; what all the CIs can do is they get electrodes to talk to each other, so they have virtual electrodes. So it is an electrode that doesn’t actually exist but they get two electrodes to talk and they meet in a middle point which simulates that part of the nerve. They all do it, so the number of electrodes is not proven to be better otherwise they would all have 22. Not sure I understand this point….. there is a simulation on the internet of what can be heard through a CI and I have been told by hearing people that 22 sounds WAY better than 16. Go figure.

The Nucleus 5 simplifies phone use with AutoPhone – the industry’s first and only sound processor designed with automatic phone detection with auto telecoil, and I’ll be able to connect easily with direct and wireless access to entertainment, music and the phone (assuming I will be able to hear them clearly enough). This CI is waterproof (not just showerproof) and I can go swimming with it on, although Liz didn’t recommend this. It’s nice to know if it falls down the toilet, it will be fine. The white one looked like an Apple offshoot, bang on trend. I chose the black colourway to blend in with my hair. There are clip-on covers I can add to change the look. There is a remote control to help make using the CI easier and to flip between programmes, similar to those on hearing aids. So I’m pleased I’ve got a CI which is a similar size to my old hearing aids and not too big.

I then went for my pre-admissions check. The nurse was completely puzzled by my palantypist, as was my CI consultant. They had never seen one before which I found sad – how do all the hearing impaired people with speech cope in hospitals?

Next, I need to visit my doctor for a meningitis injection, as there is a possible link between meningitis and a cochlear implant.The presence of stimulation electrodes passing into the cochlea may present a route for the spread of middle ear infection which, if left untreated, may lead to bacterial meningitis.

The CI team are waiting for the funding to be agreed from the Primary Care Trust and once that’s been agreed, they will give me a date for surgery. Whoop.

Let’s get borgerised!

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!

Top ten reasons to marry a speech-language therapist

10. Get your mother in laws hearing tested free

9. Translates pet talk

8. Uses appropriate sign language – except when driving

7. Early diagnosis of dementia

6. Unlimited thickening fluids

5. Steady income – for weeks at a time

4. Free oral-peripheral exams

3. Good vocal hygiene

2. Knowledgeable in tongue-thrust remediation

1. Can distinguish women from cross-dressers based on pitch, intensity and intonation patterns

Top ten reasons to date a speech-language therapist

10. We’ll prove that doing it slow makes it smoother

9. We can make you scream in all the right ways

8. One hour sessions are our speciality

7. We’ll teach you how to make the “OH” face

6. We know how to get your strongest muscle up

5. We know the value of frequency

4. We love intensity

3. We know how to swallow

2. It’s all about tongue placement

1. We do it orally!

You might be a speech-language therapist if ….

10. You casually drop the words “diadochokinetic rates” at parties to impress your friends

9. You are the only adult you know who still plays with bubbles on a daily basis and enjoys it

8. You write your child’s first words phonetically

7. You get excited about flavoured tongue depressors

6. During informal conversations with friends, you often interject “good speech!” or “nice talking!”

5. You take dysfluency data during speeches and sermons

4. Children seem to gravitate to you during social events

3. Instead of saying to your friends “What a cute baby!” you say ” Does he vocalize in two or three syllables?”

2. You can recite the Ling 6 sound test backwards

1. You make casual eye contact with people’s mouths during casual conversations

Top ten reasons to be a speech-language pathologist / therapist

10. We have ways of making you talk

9. We know what the name of the little thing that hangs in the back of your throat is called

8. SLP is more than just lip service

7. [wil/`vtutraenskraib]

6. You’re always analyzing your friend’s speech

5. You think it’s cool to hear someone swallow

4. Someone has to help Cindy Brady

3. We like to hear ourselves talk

2. You know how to say “larynx” correctly

1. You can legally brainwash people by making them repeat the same phrase over and over again