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!

Photobucket

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!

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27 responses

19 08 2010
Ann_C

I’m impressed with what you have been hearing with your CI. Just curious, was your other ear, the one you put an HA in, the better ear of the two before implant? I know what you mean about the smoke alarm– without the HA, I couldn’t even hear it but when I put the HA back in my good ear, yikes! it was piercing.

You’re talking bilateral already. 🙂 That’s a good sign, girl.

Ann_C

19 08 2010
Funnyoldlife

@Ann_C. My HA ear is the better ear, the one I wanted to ‘save’ if the CI didn’t work. Now it’s redundant! My ears are very similar on the audiogram but I could pick up sounds with my right ear and hardly anything with my left. Sometimes I wonder if my progress would have been better if I’d had my right ear implanted. But it’s done and I have to live with my decision.

24 08 2010
Dan Schwartz, Editor, The Hearing Blog

@Tina: Advanced Bionics has an open offer to NHS where the hardware for a second CI (surgical kit and processor kit) is discounted 50%, to encourage bilateral implants. Given that NHS is paying about US $18,000 for one each surgical & processor kit, the second set is only about $9,000.

What is needed is if a Brit who has one AB CI wants to pay to get his or her second CI, s/he can get the same discount offered to NHS, i.e. pay AB the $9,000 and have the hardware shipped to the implant center of their choice.

The February 2011 NICE meeting will have funding adult bilateral CI’s on the agenda; and it is my opinion that if enough adults who already have bilateral CI’s testify, they will make a more convincing case.~

19 08 2010
LeapOfFaith

I love your analogy to describe how the portal opens on having your bionic ear.

Your progress continues to astound me. All the ‘new’ sounds webbing and weaving through the fibre of your being, enriching your life and making your heart skip.

Hell, my heart is skipping for you.

19 08 2010
Я

Wow. I’ve been introduced to your blog by a common friend and frankly, you inspire me. 🙂

I wrote a long time ago on describing the feelings of hearing new sounds when I changed HAs. Recently, I’ve been running around like a headless chicken looking for HAs that’d work with me and I’m down to the last one available before having to consider doing a CI.

You mind if I link you on my blog? Currently working on opening a new one to write about my experiences too (old one is full of rants & raves).

19 08 2010
Funnyoldlife

Sure, feel free to link! I’ve added your blog as a link.

Are you putting a CI off? If so, why?

Why not keep the rants and raves – they are part of our experiences and make us who we are.

25 08 2010
Dan Schwartz, Editor, The Hearing Blog

Dear R: What is the URL for your blog?

Thanks!
Dan

27 08 2010
Яashed

Dan, sorry for the late reply. My blog is: http://earlessgeek.wordpress.com

Still slow in the start, localizing it is tough since I don’t have many resources to start with in the country regarding the deaf/hoh.

19 08 2010
Dan Schwartz

Tina, you’re getting there; but be careful to not overcook it. There’s a “sweet spot” for your IDR. As Mike says, if the IDR is too high, your brain has to work harder “to pick out the good stuff” (the speech in noise).

Also, and this is important, make sure the T (threshold) levels are actually measured and .NOT. estimated at the default of T = 0.10 * M If the T levels are assumed, then you will not have accurate “apples-to-apples” IDR figures. As it turns out, any inaccuracy in the T-levels is inversely proportional to the IDR.

For example let’s assume an M level of 100, the measured T level is 35 (but not used), the Soundwave default T-level is 10 and is actually used; and the IDR is set to 80 dB. You and the audiologist may think you have an IDR of 80 dB — and it will work — but in fact the true IDR is actually about 55dB when the measured T=35 is input, because you cannot hear from 10 to 35.

You can use the assumed T=0.10*M, and it will work… But the numerical IDR results will be just a nebulous number. The audie can speed up the threshold determination in Soundwave by grouping the electrodes into 4, and the software will interpolate the intermediate values.

Once the T-levels are properly set, only then is the IDR figure accurate.

There is one caveat: If the T-levels are set too high, with a CIS stim you can hear a crackling noise.

Be sure to read Mike Marzalek’s How to Optimize your CI’s MAP, including downloading & using his tools.

Hope this helps!
Dan Schwartz,
Editor
The Hearing Blog

Dan Schwartz

27 08 2010
Catherine Mellor

I am slow to learn technical language. My next appointment with my audie is in October, and when I go back, I hope to know exactly what to ask for. I very much appreciate the information find here. I am a tutor in Math at local community college. Any improvement in what I hear is obviously at a premium. But I really mention this because as I tutor, I am ‘pointing’ out the way they need to go to get the job done of understanding the material, and that is what is being done here for me. I know what to look for cause somebody pointed and saved me a lot of time. So a big thanks to you all.

I have a feeling that as I increase my understanding of the technical language, I am going to find myself wishing that it were possible to do the programming at home, and I can tweak away everyday if I wanted.

19 08 2010
deaflinguist

Your new hearing threshold is amazing. I did get a copy of my audiogram, but like a twit, I left the audi’s office without it (that’s me all over) so I’ll have to ask at my 6 month mapping!! That’s my next appointment . . . so a bit of a wait, but on the other hand I can still hear myself making progress, so I must be operating ‘within normal parameters’, to quote Data from Star Trek: The Next Generation.

You have described exactly what it is like: all the new information to assimilate, letting in more and more light, and the way communication is already far less stressful.

We’re boldly going where our ears have never been before!

20 08 2010
Graham

Hi Tina. Another great post. I found the HA helped me at 1st but now, like you, it is totally redundant! I haven’t worn it all for the last few weeks. If I could have a CI for the other ear I think I would………..or maybe I’ll hang around for 10 years and get stem cells sorted 🙂
I’m glad you went and got a new mapping………..9 months would have been a long wait. I’m wanting to go back already. Interesting on your settings. I dont understand the 50% T-mic bit? I’m using CV low for everyday use now but I’m worried I’m not getting the most out of it. For example the whole IDR bit confuses me. What I really want is a graphic equalizer so that I can adjust it all myself in real life situations. Sitting in a quiet audi’s room everything sound great……….get out into the real world and it’s much harder!! Yet again Dan has gone into techy geeky world (no offence Dan) and I cant understand a word of it. What he is saying though sounds important. How clued up are your audi’s. Do they just go with what you say or are they guiding you still? Mine are lovely but I get the impression they don’t really understand the settings themselves and just do as I suggest??
Sorry to go on on your blog…..(my audi’s read mine!!)
Anywyay……..glad you are doing so well.
All the best,
Graham

20 08 2010
Funnyoldlife

Hi Graham

Shout me for a coffee next time you’re in London! Stem cells are at least a lifetime away – it’s a very very difficult area to progress with the cochlea.

The 50% T-mic is 50% T-mic and 50% internal mike, this is in case the T-mic gets clogged up with sweat or dirt and stops working, so you can switch over to your 50% program and still have functional hearing. Plus, it’s useful when I’m listening with DAI (direct audio input) lead to my iPod; if someone talks to me then I just listen by flipping the switch over to the 50% program, no need to unplug the DAI lead and put the T-mic on. Alternatively, there is bluetooth, but I found this too quiet the last time I tried it.

Have you tried CV medium and high in different situations? What are your current program settings?

They cochlear manufacturer can’t make a program that suits everyone, so the audie is adjusting it to suit you and that depends a lot on what you tell them about what and how you’re hearing. So it’s really important to TALK to your audie and build a good relationship with them. She can’t read your mind, much as she’d like to! I keep a notebook and write down any sounds / dislikes / concerns and bring that with me when I see my audie. Part of it is also your brain adjusting itself and that takes time. It’s such a complex process isn’t it.

My audies are reading this blog too! *waves mightily*

24 08 2010
Dan Schwartz, Editor, The Hearing Blog

Moxie, not everyone is an Electrical Engineer, or even a former hearing aid dispensing engineer!

Both you and Tina should buy the Very Good book Programming Cochlear Implants by Jace Wolfe, PhD [ISBN 978-1-59756-372-7], which goes into enough details so you can communicate effectively with your CI audie. It’s basically a textbook for a semester-long doctoral audiology (AuD) class to introduce students to programming all three brands of CI’s; and will give you the literacy to communicate on their level.

My own review gives it four of five stars, as it misses covering both current steering and the CIS modulation techniques used in modern implants… But that’s the subject of a separate Hearing Blog entry. 🙂

24 08 2010
Dan Schwartz, Editor, The Hearing Blog

@Graham: Tina’s CI audie knows someone is watching to make sure s/he’s crossing all the T’s (tee hee) so that the IDR figures are accurate.

25 08 2010
Dan Schwartz, Editor, The Hearing Blog

Hi Graham!

Tell you what: I’ll post the info on why your audie must measure the T-levels, in order to get “apples-to-apples” comparisons of the IDR.

20 08 2010
Kieron

Hell – I’d get a third if they could find somewhere to put it!

Tina, I about fell off my chair when I read this. You’re classic. 🙂

I too have considered doing a blog, if only to prevent my horde of relatives from individually asking me the same dozen questions about the process and how it works. But I wasn’t ever any good at keeping a old fashioned diary so we’ll see.

20 08 2010
Funnyoldlife

Kieron, let us have your blog link when you’ve got going!

2 09 2010
Kieron

Hi Tina, my blog has gone “live.” Feel free to link to it. Thanks! 🙂

http://happytobehear.blogspot.com/

2 09 2010
Funnyoldlife

Linked 🙂

21 08 2010
Catherine Mellor

Hi, just checking in to read the follow up comments. Coming back later!

21 08 2010
deafdude

I read your entire blog, very interesting. You used to be against a CI, what changed your mind? Was it all the pestering for you to get a CI? Ive never had anyone pester me to get a CI. I started reading about CIs again when my audiologist in 2008 suggested a CI as a possible option, but said it was my choice. By then, I was also learning about stem cells and am getting stem cells in the near future. I know a bunch of others who are saving both ears for stem cells.

On some of your audiograms, it shows a 130db, even 140db loss at 4000Hz. What audiometer was used? I never heard of an audiometer that went this high. My last audiogram, the audiometer goes to 125db from 750Hz to 4000Hz except at 1000Hz it goes to 130db! Most audiometers out there go up to 110db or 120db in some frequencies. You hear at 20db with CI, that’s great! Why were you only getting 50db of gain with your HAs? Today’s best HAs offer at least 70db gain in the lows and mids, which im getting.

Both of my ears are similar to your bad ear. Your good ear is 10db better than mine in the low frequencies. You scored 42% speech in your good ear and 53% with both ears. That’s pretty good for your degree of loss. I still think CI candidacy requirements are way too lax when people with significantly better hearing and speech than me and you are somehow getting a free CI, insurance shouldn’t pay if they still hear well!

Check my blog regarding stem cells. There’s alot of myths floating around. I can get stem cells overseas anytime im ready. May I ask where you got the idea itll take a lifetime for stem cells to be available? Even the experts are saying itll be 15 years in America. It’s been available since 2009 overseas for hearing loss and ive been in contact with those stem cell centers, including the one that treated Chloe and several others successfully.

25 08 2010
Funnyoldlife

@Deafdude. I try to reply when I have time, a commodity I don’t have a lot of. I wrote about changing my mind here. https://funnyoldlife.wordpress.com/2009/08/02/lets-get-borgerised/
Basically, I realised that there is something much better than hearing aids out there. The stem cells is an interesting issue but there’s not information about, I am going to look into this – sounds interesting. So they are carrying out trials in Mexico and Asia, is that right? Do you have specific links to this work? In the UK, we are already using stem cells to restore sight. I feel that stem cells now are at a similar stage to where we were with CIs 20 years ago – getting there, but fairly unknown and risky.

I don’t know what audiometer was used, I didn’t look. I didn’t get great gain with my HAs because mine were supplied by the NHS. They say they supply the best hearing aids. Problem is, you have to get in line for the upgrades. Hospitals only offer one brand of hearing aid. My current HA is about 3 years old and they refused me an upgrade last year because I was getting a CI.

My ability to ‘hear well’ was in a soundproof booth and with simple sentences, a lot of guess work was involved as it is with lip reading. The CI candidacy testing relies on top-down processing. So I was not actually hearing all of the sentences, I was guessing an awful lot and picking up enough phonemes to increase my score. I’m damn good at lipreading and so can work out probabilities very quickly.

When are you going for your stem cells and where, I think you said in the next intake in November? It was my CI surgeon who said stem cells are years away.

24 08 2010
Dan Schwartz, Editor, The Hearing Blog

@DeafDude: If you think you’re doing yourself any favors by “saving” an ear by not implanting it in hope of hair cell regrowth in a decade or two, forget it.

As it turns out, this was the Hot Topic at the Hearing Loss Association of America convention two months ago in Milwaukee. Both of the surgeons who conducted packed workshops, Dr Sam Gubbels at UWisc-Madison and Dr John Niparko at Johns Hopkins, stressed the point that by waiting the 10 to 20 years, auditory neuropathy will set in, from the lack of input.

[As a side note, there were 850 people at the HLAA Convention, about 200 with CI’s, many bilateral.]

24 08 2010
Elaine

Hi Tina,

I came on here to ask how you’re getting on and wow, you’ve got lots of feedbacks…..a few have interested me but the burning question is how did you find out about the system with NHS of trying to obtain a second implant? As you know I’m bilateral myself and believe me if there wasn’t a problem with NICE accepting adults having bilateral CIs then UK would be a better place as at the moment I can only talk to US citizens on HearingJourney.com about my bilateral experiences whereas here I feel isolated and often feel embarrassed as I’ve got two and I’ve only met one who has the same make and is bilateral but is too far away to meet up. However I have to say being bilateral is far far better than one. So about your program slots, how are you getting on with your new settings? Do give me the pros and cons because I’m thinking of re-configurating my existing program slots when I go to my scheduled appointment at the end of September (it’s my 5th anniversary since my first implant in 2005). Wow I can’t believe it’s 5 years! And wow 3 years in September for being bilateral! Where does time go?!!!

24 08 2010
Elaine

My blog.

24 08 2010
deafdude

Funnyoldlife, I left you a long comment. Hope you have the chance to answer some of the questions and check out my blog. I read your entire blog, it’s very interesting and informative.

To Dan Schwartz, please re-read my above comment about stem cells being available overseas. Ill be posting more on this in my blog. I posted alot of information on stem cells. I have no interest in a CI even if stem cells fails to improve my hearing, I shall just stick with my HAs. I am not the least bit surprised by anyone else not being interested in CI because of stem cells and HAs. Those who want a CI, ill just say do your research and make an informed choice. The CI did work great for Funnyoldlife, although she was against CI a few years ago. Im not so much against CI as im pro stem cells and pro HAs. Im also an exceptional lipreader and can manage fine that way.

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