Cyborg Adventures : Preparing to Jump

17 12 2009

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.

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15 responses

17 12 2009
Bluesky

Very interesting post, thanks.

Im actually surprised you’re going for a CI, given how well you seem to be coping with hearing aids.

I believe those with residual hearing left, should refrain from having that removed via CI.

Although CI are proven to help those without any useful hearing, hear some environmental sounds and grasp speech backed up with lip-reading. It isn’t without it’s risks.

I have been pressurised to have a CI from a consultant at Cambridge. And since I have menieres disease, I would be very wary of having my head cut open and probed..the risk of my tinnitus and vertigo getting worse would surely increase!! that’s just common sense thinking.

Therefore nobody is gonna touch my ears lol..except stem cells if they are good enough.

19 12 2009
Jeremy Freeman

Wow…good luck Tina! x

19 12 2009
funnyoldlife

@Bluesky – I can cope well but it’s getting more difficult and affecting my health, as I am coping less well than I used to, and my hearing is going to get worse. I’m aiming to maintain (and likely improve) the level of hearing I have got. It’s best to get used to a CI now while I’m younger and have the energy to go through with this, and still have good cognitive skills to help me. My left ear doesn’t help me much, it just balances out the good ear a little. I’m willing to take the risk as I have nothing to lose, I am going to lose the rest of my hearing soon anyway.

I’ve been told the tinnitus may disappear altogether – it won’t get worse.

No-one should be pressurising you into a decision. I’ve been given advice and lots of opportunities to ask questions and change my mind, it’s entirely my choice.

21 12 2009
IanIlly

Interesting journey you are having here T. About 10 years back it was suggested that I consider this when I was attending the RN in London but did not pursue it for various reasons. As a bloke, what puts me off is that you have to have a huge attachment stuck on your head plus a ‘normal’ looking BTE aid. I know we should not worry about that aspect and how daft do we look making mistakes in daily life. Just another aspect is the march of technology. I’m sure by waiting until now I would get a better solution, but wait a bit longer and it would be even better perhaps? No easy answer and you are right that the way test for comprehension are done makes it harder still. Brave for sure.

22 12 2009
funnyoldlife

@ IanIlly – Have you considered growing your hair long, in a trendy male kind of way? I wish I could meet the berk who designed the CI and ask him why he/she designed it to look like a hearing aid. If it looked like a trendy bluetooth device, I would have no problem wearing it for everyone to see. I was very tempted by the white Apple-look of the Nucleus 5 CI but it still looks like a freaking hearing aid. People’s attitudes will take much longer to change to the extent they accept hearing aids as perfectly normal and not ‘Oh … deaf …. therefore not quite with it’. I think hearing aids need to be redesigned so they become trendy, like glasses did.
I don’t think hearing aid/CI technology is marching fast enough to improve much over the next 10 years, it’s taken 25 years to get to where it is today but they’re not investing enough money in the whole thing. When the ipod generation start to lose their hearing in a few years time, we might see more progress – fingers crossed.

24 12 2009
IanIlly

Grow my hair long Ha! I wish, if I did have any hair worth growing. Well anyway, thanks for the idea, about 20 years ago it might have been an option 😉

No, this is a true story, I was behind a girl in Morefields hospital and she had a CI, she had ‘hair’ but it was very obvious. Perhaps she is not bothered and could have hidden it under her hair but it was still a pretty big attachment.

I agree about the aesthetics of these devices, if all the processing power is in the implant then the actual receiver could be an in the ear model? I maybe wrong about that split of the functionality. So true about how glasses have become fashion items, I do think some women are enhanced by eye-wear, not sure about how a HA will do that though!

Keep us informed T about all this stuff, it is interesting.

24 12 2009
funnyoldlife

@ IanIlly I guess the receiver could be an in the ear model if they could get it small enough. With the BTEs, they can’t get that level of power into an in the ear device so I guess the same problem goes for the CI. It would also still need a lead from CI to magnet. It is a big attachment so I was pleased to see the new Nucleus 5 is 40% smaller.

@Mog Do you have a blog? I’d like to hear more about your bimodal experience.

22 12 2009
Fintan Gaughan

Never mind CI consultants or nurses not knowing what a palantypist this happens in a hearing aid clinics!
This sort of thing happens all the time.. very annoying really…

Good luck , also when you are fitted not sure what sort or hearing you will get but does it mean you will stop using Hearing dog for the Deaf?

22 12 2009
funnyoldlife

@Fintan – They have said I may get 100% hearing but I will definitely be a lot better off than I am now. So, weighed up against having no hearing, I think it’s worth it. I will take the implant off when I sleep, so the dog will still help me there.

Talking about annoying ENT staff…. I popped into the hearing aid clinic this week to pick up my new earmoulds. I took out both aids and gave them to the man to change, and he carried on talking to me as if I could hear him. I stopped him and told him I couldn’t hear a thing and that he had to wait until I had put the aids back in. He was foreign and there was no way on earth I could lipread him without any sound. Clueless! I think it’s disgusting they don’t train their ENT and hearing aid clinic staff in deaf awareness.

22 12 2009
Bluesky

Another annoying ENT story…whilst discussing my audiogram with a foreign audiologist, she proceeded to laugh at my results. Thinking it was funny that I had 120db loss from menieres!

I was dumbstruck to be honest and wished she buggered off back to Africa!

22 12 2009
funnyoldlife

@ Bluesky. That’s totally out of order. What did you do? Did you tell her off? Did you complain? I would not be happy if anyone tried that on with me, they would see the sharp side of my tongue!

23 12 2009
Bluesky

I was too lost for words quite frankly. Fortunately I moved away from the area..is it any wonder? lol. My ENT at Cambridge is way better, Im pleased to say.

23 12 2009
mog

Hi FOL, Congrats on your decision and go ahead for a CI. I thought you might like to know that I am bimodal. I use a MedEl CI in the right ear and a hearing aid in the left. I find that they complement each other well.

Happy Christmas

14 04 2015
laurencfouche

Hi.
I am currently a Speech Therapy student in South Africa. I have recently started my own blog about my journey as a Speech Therapist. Take a look, and share the link if you enjoy reading… I usually post once a week. 🙂

http://journeyasaspeechtherapist.blogspot.com/

14 04 2015
Tina

Hi Lauren, thank you… your blog is fascinating, I will be following! My company 121 Captions provides realtime captioning to South Africa, so I am very interested to learn about services for deaf people there. Only 3 patients in a spotless ward…. I am amazed – we don’t have that kind of thing here in UK 🙂

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