Bouncing into a hearing life

16 04 2011

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It was time for my one year annual review of my cochlear implant.  I was so excited. I was so hungry for improvements in my hearing. I have been so delighted every time I heard a new sound, understood it, and passed another milestone. It had been 9 months since my last assessment, and I was hoping to come out with good results this time.

I saw my speech therapist and we talked about my new hearing in general. She took me to the soundproof booth and tested my hearing.  Mid-way through testing, I had to ask her to shut both doors to the soundproof booth (there are two in one doorway) as I could hear people talking. It turned out that my hearing had, yet again, improved overall, with a dip at the high frequency end. The blue line shows my current hearing level compared to my hearing before I received my cochlear implant.

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Then we carried out some speech perception tests;

1. City University of New York (CUNY) sentences which is a list of simple sentences such as ‘The dog bit the postman’. Guessing from context and rhythm, or top-down processing, means I can gain more marks. The first time I took this test, a year ago, I scored 40%. I took it again 3 months after activation, and scored 48%.

2. A much harder test, the monosyllabic consonant-nucleus-consonant (CNC) test which is a list of single words. There is no context so I can’t guess, although marks are given for getting bits of words right. My score on this test, after activation, was 33%.

I had to sit at a measured distance in front of a speaker and listen to a recorded voice at 70 dB. This time, I’d had 3 hours sleep the night before, I was numb with tiredness, and I was totally thrown by how loud and deep the speaker’s voice was. BOOM-BOOM-BOOM. Whoa. I almost fell off my chair.

This time, I was hugely disappointed to score 40% on listening to sentences and 33% on listening to phonemes, although I scored 98% on lipreading with sound. I had put sooo much rehabilitation work in over the past year and I felt so deflated. I felt as if I had gone back to square one. This cochlear implant thing sure is hard work.

I then met with my audiologist to have an adjustment made to my cochlear implant settings (often called a ‘mapping’).

Each electrode was tested for comfort. I heard tones ranging from very low to very high. The audiologist increased the volume of each tone (electrode) until I was comfortable with the level of loudness for each one.

Listen up ladies and gentlemen! The operative word here, the key word, is COMFORTABLE.

Not … ‘As loud as you can stand it’.

Not … ‘As loud as you would like it to be’.

Not … ‘Louder is better, just like the hearing aid’.

It turned out that my cochlear implant had been too loud – for a year! Waaay too loud. She gave me a new setting with the volume turned way down, and another setting with the volume a little louder, just in case I found the quietest setting too quiet. This makes me wonder about the efficacy of cochlear implant adjustments / mappings. I would like to see NRI (Neural Response Imaging) used more, or a better way of testing comfort and maximum threshold levels. I find it very difficult to tell the difference between loud and louder.

Myles de Bastion wrote an excellent essay explaining the problems with Bamford-Kowal-Bench testing for cochlear implant candidacy.

The balance of the frequencies on my cochlear implant was also adjusted, so the lower frequencies are now boosted and the higher frequencies are now lowered quite a lot. I can happily listen to crinkly plastic bags and screaming children now. My audie used the Harmony listening check to test my T-mic (microphone) to ensure it was fully functioning and enabling me to hear as well as I could. That got the all-clear.

Onto my rehabilitation ….

I’ve been pushing the auditory verbal therapy as I feel this is the golden key that will unlock my mind to understanding what I’m hearing. I had popped in to see my audie for an adjustment a few weeks ago, and after that, I was able to tell the difference between the Ling sounds OO and EE. The Ling 6 sounds are the sounds that lie within the speech spectrum of hearing, and they are M, OO, AH, EE, SH, S. I had persuaded my speech therapist to give me some free auditory verbal therapy and a week after my annual review, she gave me an AVT session (this is my second AVT session) and tested me on my listening skills, reading 3 passages from ‘The Emperor’s New Clothes’. I scored 82.5%, 83%, and 85%. HOWZAT! Much, much better than in the soundproof booth with that godawful speaker!

*Twirl*

I’m happy with my new volume setting. I’ve been cringing so much lately that my shoulders are around my ears and I’ve been ratty with the over stimulation or ‘sound hangover’, snapping at people when they clatter cutlery, unpack a bag, or just generally make too much noise for my liking. Nothing makes me cringe any more. I’m now listening to talking books every chance I get – at work (tee hee), when shopping, walking the dog – not just on my commute. I figure that if I push the speech just like I did with the music, it will drive the momentum forward and get me there quicker. My interpreter is reading to me daily from a children’s book, Billionaire Boy by David Walliams – it’s quite funny and a challenging listen, as I can’t guess as much as I would with a conventional story….

‘The carpets were made from mink fur, he and his dad drank orange squash from priceless antique medieval goblets, and for a while they had a butler called Otis who was also an orang-utan.’

I’ve also lined up more from David Walliams, The Boy in the Dress and Mr Stink, and more of Harry Potter has gone onto my poor iPod, which is working over time. Jacqueline, my auditory verbal therapist, recommended a book, Bounce by Matthew Syed, a three-time Commonwealth table-tennis champion. The book explains the rationale behind success, how the key to achieving greatness lies in hard work, the right attitude, and training. This book is now on my reading list.

I’m also taking part in a clinical study at my hospital, which is looking at factors affecting audio-perception with cochlear implants. The purpose of this study is to determine if cochlear implant sound processors can be adapted to improve speech perception. The team will make changes to my programme that are intended to improve pitch discrimination based on my discrimination ability and evaluate this with speech perception. I went in to do the first round of tests yesterday. They hooked me up to their computer and asked me to carry out a pitch discrimination task, listening to pairs of sounds – the same sounds used in mapping. I had to say which sound was higher in pitch. Each sound is a separate electrode on my implant being stimulated and this was done for all the electrodes, to work out which ones give the clearest pitch and if there are electrodes which sound the same. Then I was asked to do the same task again, but this time with volume, guessing which sounds are louder, softer, or the same. These tests were incredibly difficult. I scored 100% in some areas, and fairly badly in others. So the team have now set a baseline  of my discrimination ability to work from, and will be able to evaluate how much benefit my auditory verbal therapy will give me. In July I will return for another set of tests and will be given a program on my processor to try out. So I’m really trying to push the boundaries of my brain’s ability to hear, to make this cochlear implant as successful as it can be for me.

And … now for the best news of all. I’ve  been given all my birthday presents at once. My cochlear implant team informed me that I’ve been approved to go bilateral. As the HiRes 90k implant is now back in production and available in the UK, I’m in the queue and hope to get my second bionic ear this summer. Two ears, even if one is very new and not performing as well as the older implant, will give me better hearing overall due to the concept of synergy. So I will benefit from two ears fairly quickly, I won’t have to wait for a year or so to benefit from the newer one.  With two good ears, I will be able to detect direction of sound, hear in noise, eliminate the head shadow effect, and hopefully do a pretty good fake of a hearing person.

I CAN’T WAIT, CAN’T WAIT, CAN’T WAIT!

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23 responses

16 04 2011
Rich Harder

Congratulations on being approved for Bilateral. I’ve been bilateral for about a year, and really think it improved hearing in noises and they make everyday hearing less stressful. Hope you have similar results.

Rich

17 04 2011
Rose Sivils

Your making great progress. Don’t be so hard on yourself. Congrats on becoming bilateral. Wishing all the best.

Rose

17 04 2011
WisDeaf

Congratulation and am proud of you that you worked hard to achieve your goals to be able to hear very well. It does take work and dedication to make it very successful. Please keep it up. 🙂 I am bilateral CIer.

17 04 2011
Paul

Excellent audiogram, Tina! Yeah I agree on the “not as loud as you can stand it”. That wasted 6 months of my rehab. They do need a better way of setting the Most Comfortable Level. It is particularly difficult for me as the tone frequency changes for the different electrodes. That makes it difficult to not only pick a comfortable level but also to compare against the adjacent electrodes.
I’m jealous. You’ll be bilateral way before me. Good luck!

17 04 2011
thepavingandlandscapeco

You’ll quantum leap into stereo with 2 AB implants. I’m keen on having another, but will wait till they become fully implanted. That way my shaven head won’t look so cluttered.

3 05 2011
Howard Samuels

You know, the most common regret is not having gotten an implant (or a second one) sooner. Think about it – you are comparing asthetics against quality of life. Be bold! I’ve seen a couple of shaven heads with implants on them. It’s a pretty cool look, if you ask me.

17 04 2011
Wendi

You will LOVE being bilateral, Tina — I’m so glad you were approved! Just wait til you do those sentence tests with two CIs…you’ll kick ass!! 🙂

I totally agree — less volume is definitely better. I’m so happy that your CI is at a nice, comfortable level for you now.

Doing a Snoopy dance for you here in Illinois!! 😀

17 04 2011
Howard Samuels

I’m jumping up and down with excitement for you!

And you make an excellent point about comfortably loud. I used a hearing aid for 12 years before getting my first implant, and I thought that more volume was better. It isn’t. Hearing with a CI should be completely comfortable, and you should be able to go all day long without getting tired. And if something as innocuous as a crinkly bag doesn’t bother people with normal hearing, it shouldn’t bother you either.

17 04 2011
Adam Fitzgerald

CONGRATULATIONS!! I know you have got to be excited. did they give you any indication of when you will get it?

17 04 2011
Tina

Not yet … They say there is a problem with the hospital’s new I.T. system so they can’t check dates …. Arrghhh!

20 04 2011
Joe

As I always say, awesome! 😀

21 04 2011
Harry

As a hearing aid audiologist for nearly 30 years, I am still banging-on to audiologists everywhere about the importance of constantly checking the Most Comfortable Level (MCL) and the Uncomfortable Level (UCL) when setting-up and reviewing hearing aid fittings. Unfortunately UCL’s are regularly omitted in some NHS clinics, but regularly done in the private sector, where I practice.

I tell my patients that the seeking for better hearing is a journey all through life….So keep on complaining/ requesting more accurate settings….you are obviously on the way! lovely to hear so much detail from a user.

4 05 2011
Tina

Harry, I complained to audiology and I got a reply today. They will try to fit me in this week to lower the levels for me.

I discovered an interesting thing today…. I asked my interpreter to whisper to me. She asked me if I could hear her, and I said ‘No problem, you actually sound loud – I just have difficulty understanding what you’re saying’. She could hardly hear herself and she was so surprised at my comment. It’s time to turn this thing down!

24 04 2011
Dan Schwartz

Tina, I’m so happy for you that you got approved! Did NHS’ N.I.C.E. decide that all adults are now eligible for bilateral CI’s; or is yours a one-off deal?

Happy Easter!
Dan

25 04 2011
Tina

N.I.C.E. guidance is at http://guidance.nice.org.uk/TA166
There is no update yet on the current guidelines so I can´t say.

25 04 2011
cyborginafield

Hey Tina, wow 2 C.Is that will be awesome. So…. how did you manage to swing that??

26 04 2011
Tina

I presented a good business case!

27 04 2011
whosaidthat1

Im pleased for you Tina….

Me ….oh well nevermind lol

5 05 2011
14 05 2011
sammarcko

Good going Tina.

One interpreter facing the dole and one scraggy dog facing the pound.

Life gets so much more simpler 😉

14 06 2011
wedding photography essex

Congratulations on becoming bilateral. So happy for you, it’s a big step in your journey. Good luck and best wishes x

25 07 2011
Christa

Hello,
I just found your blog by accident, doing some research for a presentation (I am a final year Audiology student). You sound like you are doing really well, and you have a great writing style and way of describing your experience. Congratulations on the approval for bilateral! We had a lecture by a woman who has two CIs (she works for a children’s CI programme), and she has two different brands. She noticed a big improvement though, after she got used to “having two ears again” 🙂
Best of luck

25 07 2011
Admin

Having two different brands is really unusual! I would love to hear what she thinks about them. Thanks for your comments and good luck with your studies!

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