CI-activation log no. 2 – day 1 and 2 – 1st auditory self assessment

These values that I test on myself are values based on this resource: http://www.phys.unsw.edu.au/jw/hearing.html
The scores are from the chart on that page.

The sound-level on my laptop HP HDX18 will be set to the value of 74 every time I do this test. My CI’s volume wheel is set to exact the middle position (turning all the way down reduces sound volume by 20% and turning up increases 50%!). Then I have the same test-settings every time. “Wire” means that I use a direct connection between the computers jack-plug-outlet and my Advanced Bionics processor. No sound pollution possible.

Every level of registration is a notion of sound. That means that I do not necessarily detect the difference in tone/frequency. Green is where I hear the sound (yet so far all the sounds sound mostly the same, i.e.. a very thin squeaking tone or beeep), red is only a short beep, blip, bip or ding.

( I can hear  violin of my own breath, broken glass of paper being crumbled and a ding every time one of my fingers hit a key on the keyboard!)

If anyone know of more sound-test or sound-generating resources on the internet, I’d be grateful for any tips!

Date of test: 07.09.2009 (1,5 and 6 kHz is the frequencies of my tinnitus, hard to hear the test-tone)

Program 1. (stronger low pitch, weaker high pitch, 120)

Freq. 30 Hz 45 Hz 60 Hz 90Hz 125 Hz 187 Hz 250 Hz 375 Hz 500 Hz 750 Hz 1 kHz 1,5kHz 2 kHz 3 kHz 4 kHz 6 kHz 8 kHz 12kHz 16kHz
No wire -9 -6 -9 -9 -18 30 -27 -42 -45 -51 -48 -27 -48 -48 -45 -27 -42 -6 -3
Wire -27 -24 -30 -21 -15 -57 -66 -75 -84 -75 -78 -63 -54 -78 -72 -72 -69 -27 -27
08.09.09 -21 -30 -27 -24 -18 -60 -69 -75 -81 -75 -72 -60 -57 -78 -75 -63 -63 -27 -27

Program 2. (Flat profile, 16 electrodes)

Freq. 30 Hz 45 Hz 60 Hz 90Hz 125 Hz 187 Hz 250 Hz 375 Hz 500 Hz 750 Hz 1 kHz 1,5kHz 2 kHz 3 kHz 4 kHz 6 kHz 8 kHz 12kHz 16kHz
No wire -6 -3 -6 -6 -18 -27 -21 -33 -42 -42 -42 -30 -36 -36 -39 -36 -42 -6 -6
Wire 0 0 0 -6 -6 -51 -69 -75 -75 -75 -72 -60 -60 -60 -63 -51 -54 -27 -27

Program 3. (Flat profile, 120)

Freq. 30 Hz 45 Hz 60 Hz 90Hz 125 Hz 187 Hz 250 Hz 375 Hz 500 Hz 750 Hz 1 kHz 1,5kHz 2 kHz 3 kHz 4 kHz 6 kHz 8 kHz 12kHz 16kHz
No wire -6 -6 -6 -6 -12 -27 -21 -36 -39 -42 -45 -30 -27 -39 -54 -36 -42 -9 -9
Wire
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Status update IV – early autumn 2008 – part 2 of 5

Adjustment of my HA

Dear Abbie, this paragraph is dedicated to you:

Earlier this year I complained about hypersensitivity to sounds, recruitment and other issues that made my days difficult. Then a fellow CI-blogger; Abbie simply suggested that I should get my hearing aids adjusted. Of course! Why didn’t I think about that?
(I think the answer to this is that I still define myself as a hearing person, so reducing my hearing would make me become more deaf, which I am not in my own definition of my self…. I know it’s contradictory… complicated stuff this self image thing.)

Anyway, I carried the thought for some time, and finally got myself around to ask for an adjustment-session at Rikshospitalet, which I got with a few weeks notice. I got it done this august after coming home from vacation.

So I reduced the levels of amplification in my hearing aids, and this time I was relentless about protecting myself from unnecessary strain. I adjusted the overall volume down two notches, and reduced the amplification of faint sounds significantly, these are sounds I won’t need, I can’t use them to anything useful anyway. And I reduced the sounds in the higher end of the frequency-scale a little bit. All in all it has reduced the strain of me using my HA, but at the same time I’m certainly more deaf. But the thing is, I now use more of my energy to lip read and guess the context of the conversation, rather than use my energy in deflecting the too sharp and too strong sounds coming from my hearing aids…
I don’t have to hush on my mother or son as much anymore, which is a relief, actually.

At this hearing aid adjustment I did a new hearing test. I was just as honest with myself this time as I was last time. I did not cheat on the test like I have done in all the years before. The result was the same as the previous one, 2 years ago. Still just as deaf as when I started the process of getting my CI and writing this blog.
The upside is I can keep the hearing aids on for longer periods now, and I tolerate sound and noise better. But it’s worse in social aspects with many people around, and one on one conversations in quiet surroundings are also a bit more difficult, due to the lower volume. But overall the adjustment was the right thing to do in order to avoid going crazy and overburdened in the audio sensory aspect.

I’m still just as tired and prone to general fatigue, but the pain from loud sounds are gone, and the level of tolerance is way up. Maybe given a few months I will notice effects from this preventative measure too? Too early to tell anyway, but will report here if that turns out to be the fact.

Thanks for the suggestion Abbie! Sometimes one need to hear the obvious from others…

Posted in hearing. 1 Comment »

The relief of a summer

This summer I felt better than I have in many years. Somehow I think getting away also meant that my mental self got away for a while. I did what I said before in this blog: I left it all (about my hearing and thinking about it and being tired from it) behind and “forgot” it. It was a really good summer for me with one exception: my girlfriend had to work and couldn’t join me… But with a little help from my friends….

I was really busy: Viking-festival, a little party almost every night with my friends from Poland, a bicycle-trip almost every day while in Poland, spending time with my son, and spending time with my family at our place in Sweden and fixing it up even more. I got a energy boost from getting away and doing physical work and exercise outdoor with fresh air and the beauty of nature around me.

Coming home was hard, I could feel the weight of my life right now coming down on my shoulders… I’m not complaining, but explaining the fact that psychology has a huge factor in my situation. Coming home reminded me of everything: not being able to work, waiting for the CI, missing my girlfriend badly, getting tired from spending time with friends and family in a social situation (I was really exhausted after the vacation, in a good way, and I still haven’t rested up again, it feels like.)

So now I’m almost back into the everyday routine that I have had the last two years; and it is hard. It isn’t really bad, but it is certainly a burden that requires that I keep thinking about the positive and do all I can to keep bad thoughts at bay.

I was interviewed by the Norwegian Hard Of Hearing association membership-magazine today (it is called “Din Hørsel” (Your Hearing), will get back to that when it’s published sometime in late September or early October.

It was an interview about me waiting for so long for the CI…

Also the the struggle for getting bilateral rather than unilateral CI has begun for me. I finally got into contact with Sheri Byrne from the Let them hear foundation, the US lawyer who won 325 or-so lawsuits against the insurance-companies who in the beginning declined bilateral CI stating that one was sufficient for everyone… (would you accept good sight on one eye rather than on both?)

Anyway, I’m back after a long nice summer, and will continue to write more in this blog. Keep reading, and I really appreciate all comments given, even negative ones… I’m all for freedom of speech.

Posted in hearing. 1 Comment »

Scientific proof in favor of bilateral CI

Hello, world! I’m back after long and nice vacation. Had a great time. Now I’m ready for another year of blogging about waiting for my CI. Will initially start up with a plea for help about information.

I need arguments in favor of bilateral Cochlea Implants. I wish to operate on both ears simultaneously for several reasons: one surgery and be done with it. One time recovery instead of two. I will benefit from doing the same drastic change to both ears at the same time as opposed to operating both with years between. I risk getting an imbalance between my two ears that will take long time to adjust if it will be several years between both surgeries (if I’m ever allowed a second surgery that is…)

Could my readers help me with finding research material concerning this topic?

I found this piece of information on the net:

Benefits of bilateral are much more than just the obvious cost benefit, or the sound-booth measurable difference. As I’ve investigated whether to get a bilateral for my 6-year-old son, I’ve spoken to many, many adults and parents of children with bilaterals.

Here’s what I’m being told, over and over: Science (sound-booth tests) says it’s a 10-20% benefit. However, science can’t measure how much less exhausted I (or the child) am at the end of the day – how much more I (or the child) feel willing to participate in groups, how much more conversation I’m getting. All of this eventually translates into costs, later in life.

If I ask the scientists, they say the benefits (measurable) are
* Improved distance hearing
* Improved incidental hearing
* Improved localization of sound
* Improved performance in sound-to-noise settings

Ask the recipients themselves, or their parents, they add:
* Improved enjoyment of music
* Improved hearing in group settings (isn’t life one big group setting – especially childhood?)
* Exhaustion factor, read above

Some studies show that unilaterally deaf children are ____ 10 times _____ more likely to fail a grade in school. Unilateral implant recipients seem to me to fit into this category.

 

Would it be possible to find papers and studies about these things that can count as proof in the legal or bureaucratic system?

Also I found this this name: Sheri Byrne-Haber (link to article about her work in the US). Does anybody have her email-address? I’d like to get in touch with her to see if she can share some of her arguments…

“Claire renaissance” in the drizzle rain


Visual beauty will suffice in the absence of my dear ones and in absence of auditory art/beauty…

Posted by ShoZu

What is the CI-situation elsewhere in Europe?

If anyone has information regarding CI-operations and CI-related health benefits in Europe, I would be extremely grateful for any input.

Do people have to wait for surgery?
How is it financed?
How about the follow up, and re-mapping after the surgery?
What country has the best reputation?
Is Advanced Bionics represented in all European countries? (I might have found out for myself, but I’m on my way to the great Norwegian mountains and fiords, so this is also a memory-note to myself…

Particularly I’m interested in Sweden, Denmark, Germany, Switzerland, Austria and UK. Maybe even the old east-bloc countries are better than Norway in this area? I’d love to hear!

My mother asked me if things would be different if I was a EU-citizen, as apposed to an European Economic Area (EEA) – citizen, which I am, being a Norwegian…

I could move to Sweden if that would speed things up a little bit. That’s the idea, anyway…

OK;

the weather is great and I’m outta here for the weekend! Have a nice weekend everyone!

17052008 – the last b’day before CI?

My son grabbed my mobile and took my picture. I had forgot that Shozu sends them directly to my blog unless I abort, and alas; my sons “journalistic scoop” ended up on my blog 🙂

He did a nice job, so I’ll just leave it as it is with my text here…

Thanks son! I had a nice b’day! Love you!

Posted by ShoZu