A lot of people asks me how I am doing, so I better post an update
If you want to know more about Cochlear-implants, click linked image below to read more…

Compared to the first surgery I underwent in 2009, this operation was a walk in the park. My surgeon specializes in gentle surgery, and I can tell you, my first CI-surgeon was a butcher compared to Dr. Med. Marie Bunne.

Some of my blog posts from the days after my first surgery (listed by date of publishing): day 3: Feeling beaten up… , Day 5 – From dull to sharp – in many ways , On the operating-table , Post-Surgery and The Day after , Tinnitus maximus terrorismus and some of the other posts from 2009 mentions the problems with balance (Oct., Nov. and Dec. 2009).

The upside

I have been up and about ever since day two. Today, 8 days after, I’m starting doing the annual accounting work for my company, nageldata.no. In other words, back to work, even if it’s just tedious easy work… First surgery had me bound to bed for two-three months!

The surgery-wound dressing fell off two days ago, and I didn’t bother replace it, since the wound is dry and looks beautiful. I mess as little as possible with it. It is itchy from time to time, but I just rub the skin close to the stiches, that’s enough.

Sleep has been good, except for the pain. The first nights I was, just like after first surgery, just deep into the sleep (medication plus recovering from surgery trauma). Bliss. Now it’s slowly getting back to normal, that is; waking easier by smell, light or movement. I expect pain from pressure from head lying on pillow on the “wrong” side disappears in a day or three.

I’m looking forward to a much quicker recovery this time, and that is not wish-thinking. I have plans to take up swimming as soon as the wound is healed and stitches are gone. That will speed up balance-recovery as well as improve the tinnitus-situation.

Speaking of tinnitus, there has not been much difference in tinnitus this time. The first surgery was followed by an explosion of tinnitus, mostly in the operated ear. But also in my left ear, due to the sudden silence (I could not bear to use the hearing aid, it wasn’t of any use. On the contrary, it was outright painful. This time it has been a few episodes in the newly operated ear, but they have been mild, like they were before the surgery. And there is the same constant sound it has been the last two years, sounding like a power relay station, that humming sound.

The downside

I’m dizzy, on the verge of nauseous. It’s quite constant, but I can’t move my head too much, or it’ll get much worse fast. Especially looking up/down, is a movement my balance-organ doesn’t like very much.

The suspected migraine aura thing is just around the corner most of the time. It feels like pressure behind my eyes, and the eyes feel very dry and almost as if it has been overexposed to direct sunlight (the words snow blind comes to mind). I have become much more vary of the symptoms now, and make precautions such as turning lights off, resting or taking time-out. The surgery didn’t make it worse in itself, but the dizziness combined with this migraine aura is very tiring and debilitating.

Sound in my first CI is different these days. First i thought it was because I had a flu-bug since 3-4 days before surgery, and finally got rid of it on day 6-7 after surgery. But the “glassy” sound is still there, and makes me a little bit annoyed with speech-sounds. I isolate rather quickly these days. (Sorry about that, wife ) While writing this I’m force feeding myself with Pearl Jam, even though sounds make me feel dizzy. I just want to give it massive amounts of sounds in order to get my brain to get over being seasick. It’s really exhausting work, listening to something I really like, while the sound itself makes my head spin Something has changed inside my head again, that’s for sure. I think the pressure from the fluids inside the newly operated ear has an effect on both the vestibular system, as well as my inner ear. I suspect the situation will normalize sooner or later.

Tired, or constantly near-tired, is my mainly prevalent condition these days. I’m somewhat used to it, but after being on my road to (very slow) improvement the last 12 months, I realize that it comes with a rather significant mental price.

I’m back to being grumpy, quickly irritated. Having said that, these mental symptoms are milder this time, compared to after the first surgery. I think being aware of the above mentioned is half the cure. Also previous experience helps. I know somewhat what is happing, the anxiety isn’t as strong because of that. The rest of the cure comes when my physical condition improves and I’m going back to cognitive therapy in February again. Well timed, and I hope it will not be too many sessions. I hope to be finished with it for good before summer 2012.

Family life

My wife (we got married December 18th 2011 ) is my greatest support. I might have days where I just want to be left alone and not have to relate to anyone, especially in these recovery weeks. Having a family, including a 10 weeks old baby: Joanna, is more a boost than a burden. It reminds me of what I really want in this life, and how it could have become: without CI and the chance to hear again, I would be in a very dark place. Sure, I would have found a way to be happy and function, but it would probably been a much longer and harder road.

Now I get to be a father of a wonderful baby girl (not forgetting our two boys either), I have a great deal to look forward to, and I have the special one to share it with and her family as a new branch of my social network as well

I feel I have beaten the odds (of my life) in many ways, but half of that victory belongs to my beloved Mette too… Without her never ending patience, her loving care, her endurance, her positiveness, her stubbornness, her dedication and all those other things, we wouldn’t be where we are today.

Thank you for your love, love!!! ♥♥♥

Priority now is to just take it easy.

This second operation was performed by chief surgeon Dr. Med. Marie Bunne at Rikshospitalet. I was operated on in the “intervention” operating room. In this room they have a sophisticated kind of X-ray equipment which allows the surgeons to view the actual insertion of the electrodes on a live camera X-ray. So the whole idea was to give me special treatment during this surgery, given the fact that I had some bad trauma after the first implant. I struggled with balance for three months, and suffered severe/extreme tinnitus after the first implant.

Dr. Med. Marie Bunne specializes in gentle surgery (article at HLF about Dr. Bunne), and let me tell you: I can feel the difference!

After the first surgery in 2009, I could barely walk, balance was thrown, the muscle that I chew with was sore and aching for weeks. My head felt like a balloon. After THIS surgery, sure I am in pain, but I think I will, on day three, not need more painkillers. I have no notion of swollenness (barely visible below my ear), no sore muscles. All I can say regarding effects from surgery on day three is a slight metallic aftertaste in mouth, and some dizziness, which I suspect is due to pressure from fluids building up in my inner ear. Allthough I’m dizzy, my balance is fine. Slight feeling of vertigo.

They have taken imagery of my first implant in my right ear, which is due for analysis in a few months (tonnes of material, one guy to analyze… budget situation or something ) Will be interesting to hear what they find on those images, if the electrodes are badly postioned or what…

The currently used electrodes from Advanced Bionics are slightly thicker than the elctrodes from Med-El or Cochlear. Advanced Bionics are currently woking on getting approval of those new electrodes from US FDA. I found out I did not have the time to wait for those…

I’m now, FINALLY, bilateral. Can’t wait for activation and actually start to use both ears again

In terms of becoming deaf, I have now been working for some time on becoming a hearing person again. Mostly it has been about taking my life back, but at the same time, my auditory senses are getting better and more used to the new situation. As becoming deaf was a traumatic, frustrating, depressing and exhausting experience, starting to hear again is a different story. Of course, many of the side-effects of becoming deaf are not gone by far, but they become more and more manageable. And that leads to different perspectives and new insights.

I just published the last (previous) post on this blog, adding pictures, links and fixing layout. The link to the Wiki-article about Migraine Aura also contains a list of symptoms, whic I found extremely interesting. In fact, it might yield some clues to my condition that I did not know before.

In an overall sense, it might seem likely that a condtion as migraine might have been mistaken as symptoms of becoming deaf for several years. My mother has migraine, so I am genetically predisposed. But now, with the right ear CI starting to function as a normal ear, it’s perhaps time to investigate further… That process begins here:

Self-diagnosis regarding the Migraine Aura:

This list is taken (copied) from this source, and are the symptoms I experience:
(the other symptoms have been removed)

Visual changes

• Distortions in the size or shape of objects
• Vibrating visual field
• Tunnel vision

• Kaleidoscope effects on visual field
• Heightened sensitivity to light

Auditory changes

• Hearing voices or sounds that do not exist: true auditory hallucinations
• Modification of voices or sounds in the environment: buzzing, tremolo, amplitude modulation or other modulations
• Heightened sensitivity to hearing
• Someone speaking at a level and normal tone sounds like they are shouting loudly

Other sensations

• Heightened sensitivity to smell
• Feelings of déjà vu or confusion
• Feeling as if one has to eat or go to the bathroom
• Feeling as if you are getting warmer or overheating
• Sudden Perspiration
• Weakness, unsteadiness
• Being unable to understand or comprehend spoken words during and after the aura
• Temporary amnesia, such as forgetting how to do tasks you have been doing for years

This list/text is from a Wiki article about Migraine:

Prodrome

Prodromal symptoms occur in 40–60% of those with migraines. This phase may consist of altered mood, irritability, depression or euphoria, fatigue, yawning, excessive sleepiness, craving for certain food (e.g. chocolate), stiff muscles (especially in the neck), dizziness, hot ears, constipation or diarrhea, increased or decreased urination, and other visceral symptoms.^[15] These symptoms usually precede the headache phase of the migraine attack by several hours or days, and experience teaches the patient or observant family how to detect a migraine attack is near.

Aura

For the 20–30%^[16][17] of migraine sufferers who experience migraine with aura, this aura comprises focal neurological phenomena that precede or accompany the attack. They appear gradually over five to 20 minutes and generally last fewer than 60 minutes. The headache phase of the migraine attack usually begins within 60 minutes of the end of the aura phase, but it is sometimes delayed up to several hours, and it can be missing entirely (see silent migraine). The pain may also begin before the aura has completely subsided. Symptoms of migraine aura can be sensory or motor in nature.^[18]

Visual aura is the most common of the neurological events, and can occur without any headache. There is a disturbance of vision consisting often of unformed flashes of white and/or black or rarely of multicolored lights (photopsia) or formations of dazzling zigzag lines (scintillating scotoma, often arranged like the battlements of a castle, hence the alternative terms "fortification spectra" or "teichopsia"^[19]). Some patients complain of blurred or shimmering or cloudy vision, as though they were looking at an area above a heated surface, looking through thick or smoked glass, or, in some cases, tunnel vision and hemianopsia.

The somatosensory aura of migraine may consist of digitolingual or cheiro-oral paresthesias, a feeling of pins-and-needles experienced in the hand and arm, as well as in the nose-mouth area on the same side. The paresthesia may migrate up the arm and then extend to involve the face, lips and tongue.

Other symptoms of the aura phase can include auditory, gustatory or olfactory hallucinations, temporary dysphasia, vertigo, tingling or numbness of the face and extremities, and hypersensitivity to touch.

The really intereseting part, for me, is the one pertaining Auditory changes. This enters the territory of tinnitus, and working my way through this list, I start to look forward to seeing an expert neurologist. I already have been to an eye expert, which in turn forwarded me to Rikshospitalet and an expert in neurology for further examination. Receival of transfer has been confirmed, now I just wait for a proper appointment. Who knows when that will be. I’m not holding my breath, and besides, I have other things on my schedule right now

Becoming bilateral!

On january 18th I will receive my second implant, and it will be interesting to see if that procedure will have any impact on any of the conditons I have written about today.

I expect the sound to be easier to work with, of course. Getting stereo again will be sweet  
Maybe (hopefully) the effect of tinnitus will lessen, since my implanted right ear was the worst one, also in terms of tinnitus, before the first surgery, and the left ear has been resting for 2 years now. The left ear might very well become my best CI-ear.

I still hear thumps, firecrackers, airbombs (new years eve fresh in mind ) jetplanes, bass from loud music and trucks on my left ear, so the auditory nerve is very much intact.

Will be a whole new process, of course, with the benfit of the right ear having paved the way for the altered sound signatures of all sounds around me in everyday life. Also the stereo will add the benefit of my brains capability to calculate the location and distance of any given sound or voice, in all kinds of sound environments…

Really looking forward to that process, and most of all, getting to a point where I can actually rest comfortabley on my auditory sense instead of working hard on it and / or compensate with lip-reading, mind-reading, guessing etc.

Going from a fight of survival to a process of healing

Is this the transition from fighting for my life, my sanity, health and hearing, to actually start to heal? It might very well be the case. It feels like the previous oncoming deafness, the struggle to get proper help and the road back finally is starting to pay off. This of course, gives me a tremendous boost in morale, and will affect not only myself, but my whole family and everyone else I love and care for.

I have thought about the day I can work on honing my social skills, and to be with people without having to resort to coping mechanisms like withdrawal from pleasant/interesting company (self-isolating), turning off sound, “tuning out” (looking the other way, seemingly uninterested) etc. It will maybe have to be a conscious effort on my part, to change my (socially negative, but (previously) personally essential) coping habits in order to adapt to the new reality of having two working ears again.

The human body, including the human psyche, is a tremendously complex biological machine, and I am certain that there is a lot more improvement in store for me in my life and in my health, as I now await the final phase of my return to the hearing world (100%).

I can’t wait

Here are the highlights:

• Unilateral hearing is pretty good.
• Downside is tinnitus and problem with speech in noise + very tired.
• I might have some kind of migraine, could be related to my struggle with getting sound «good». This winter has been bad. It is being pursued and investigated. Migraine aura, something like the picture shows.
• Got engaged with my girlfriend.
• Became a father to beautiful Joanna.
• Got married

I focused on taking my life back in terms of living it and creating a family together with my wife.

This period has led to this moment, where I’m happy to announce that I will finally become bilateral on the 18th of January 2012!

I look forward to it, and expect life to become little easier, in terms of using energy on understanding speech. How long time it will take, no one knows. What level of sound comfort and skill I will reach, remains to be seen.

I am anxious to find out if it will improve my general health to the extent that I will be able to partake in work-life again. As of now, I’m on the limit with family life including two boys, an infant and wife.

Further reports will follow, documenting this final ascent into bilateral CI heaven

Posted from WordPress for Android

What happened to me when I reached this point was that I found myself in a scary void. Even despite all the other good things in my life, it (the hearing and CI thing) had taken up so much space in my head that it felt empty trying to purge it.

I went to psychological counseling again, and again I found invaluable help. I feel I’m pretty much out of the problems and in control of my emotions again.

So, after I stared into the abyss and survived, the void had to be filled with other things…

Then find focus elsewhere; I engaged this beautiful woman, started living my life with her, creating US, a family unit. Now I found resources within myself to work better with her, and also to get a hold of a bigger issue that I had put off for too long. This personal “big” issue was put aside in a subconscious way, but in retrospect I see it more clearly. I only wish I could have explained it better to my fiancee at that time. Of course she worried about if I was denying the whole thing. (We both agreed early on it was too big to ignore.) I have to give her a huge credit for trusting me and us, and for her to actually dare to “wait it out”. I know it was super-difficult, and you didn’t waver. Thank you darling! And thank you for kicking my ass exactly when I needed it. I love you so much!

Experiences has been harvested, both good and bad, as it should be in normal life.
The family situation has been a very rewarding experience. It has proven to me what I always have believed; if you stay true to yourself and your values long and hard enough, happiness will follow.

Your head hurts but you can’t bleed…

Posted from WordPress for Android

Hope you enjoy these: it’s divided into four videos, and 1,2 and 4 are captioned… (don’t ask me why the third isn’t captioned, I don’t know)

Part 1

Part2

Part 3

Part 4

Since my first CI surgery, I have had a steady progress with both learning what sounds means, and understanding speech. Of course, my tinnitus makes it a little harder, given the fact that I’m still unilateral. It is hard work to hear with one side only, and at the same time “fend off” tinnitus that seems to have an endless variation to it, especially when listening scenario isn’t optimum. To put it short, I’m struggling, but coping, and getting better at utilizing what I after all actually have been given, through the miracle know as CI!

Well, the wonderful part, is this: sitting in the sunshine, listening to birds chirping and tweeting and singing away. Last year it was almost too much, so many sounds and melodies, crisp clear and I had no clue as to what birds I was listening to. But today, I dozed off! That was a first for me, post-surgery, WITH CI still active!

To me this signals yet another level of adaptation that my brain makes. Slowly adapting to the new sounds, and getting used to them, rather than getting tired from them. In other words: a very good felling and a little bit like good news when I realized what had just happened

Great day, great experience

Happy Easter everyone!

I haven’t studied it, but at first glance it seems appropriate to anybody trying to get an overview of the CI-market. Kudos to the girls running Cochlear Implant Online !

Here is the link to the actual chart

The Blog-Health-o-Meter™ reads This blog is on fire!.

Crunchy numbers

The average container ship can carry about 4,500 containers. This blog was viewed about 24,000 times in 2010. If each view were a shipping container, your blog would have filled about 5 fully loaded ships.

In 2010, there were 18 new posts, growing the total archive of this blog to 191 posts. There were 59 pictures uploaded, taking up a total of 2mb. That’s about 1 pictures per week.

The busiest day of the year was January 27th with 140 views. The most popular post that day was Politics.

Where did they come from?

The top referring sites in 2010 were deafread.com, facebook.com, wellsphere.com, deafvillage.com, and stumbleupon.com.

Some visitors came searching, mostly for broken heart, heart broken, deaf, electric storm, and fatigue.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

Politics November 2007

Mending my broken heart September 2008
5 comments

From HardOfHearing to deaf – the symptoms May 2007
4 comments

Vestibular disorder symptoms I have experienced January 2008
5 comments

Explaining the analogy: “Recruitment” of hair cells in cochlea January 2008
18 comments

I have therefore decided to take a long break from writing here.

I will return in 2011 when I get my second CI.

Otherwise I’m still getting better, both health wise (in general) and hearing wise. But the recovery takes extremely long time, and I guess it’s because I went so far off the edge before getting my first CI. I believe a lot of my current challenges are due to the fact that it took 5 years from my decision to go for CI, before I was operated.

I believe it will be very interesting to see what happens with my speech perception with CI no 2. next year.

Hope you all are well.

Bless you!

Background: Katharine Cecilia Peterson (Kate for short, brief presentation further down) has asked me (and others) to join her as a co-therapist for a research project looking into social phobia and the effects of cognitive therapy.

Disclaimer/personal experience: I can not claim expert clinical knowledge regarding social phobia, other than that I have experienced it on my own. To what degree I experienced social phobia is also a subjective matter. Also I am not an expert on cognitive therapy either, other than that of my own experience with such therapy, and it’s effect, regarding my tinnitus (reference to earlier blog posts relating to this matter: No cure for tinnitus, Life gets easier, Difference btw recruitment and tinnitus, Tinnitus cognitive therapy) I was open minded about the cognitive therapy approach, and did all the training by myself, in addition I had three hour long sessions with a professional advisor.

The text after the double line has been copied, translated and adapted from http://katharinececiliapeterson.wordpress.com/ , she writes her blog in Norwegian.

She is a psychologist, and has been a valuable contact for me personally through the years, since I have met her on various occasions/courses, and she works at the place where I received psychological therapy: Nasjonalt Senter for Hørsel og Psykisk Helse. She played a small part (HUGE gratitude on my part!) for my mental wellbeing today, as she helped me get in touch with the right people when I needed it the most. Currently she is heading a research project I will write more about in the time to come (since I am a part of the project, obviously)

Ok, let’s get down to the business at hand

====================================================

Shy?

Social phobia, also know as social anxiety, is the third largest psychological problem in the world today. Internationally there has been found lifetime prevalence between 7.1% and 13.3% (Gråwe & Nordahl, 2000).

Five reasons why social phobia is so hard to get rid of:

1. Social phobia doesn’t only induce anxiety, it also goes with another emotional response: shame. This emotional reaction is in many cases stronger than the anxiety.
2. Social phobia is a form of anxiety, that compared to other forms of anxiety, in a greater degree triggers somatic responses such as sweating palms or tightening vocal chords.
3. In contradiction to for instance a panic disorder, the feared actually occurs: you DO become worse functioning in a social context.
4. The anxiety in itself becomes a secondary threat because many with social phobia lives with an assumption that the anxiety must be hidden at any cost in order to prevent a negative evaluation by others. The catastrophe is if others actually see your shakes, sweat or blush; a fear that increases the probability of that very thing happening!
5. As opposed to other forms of anxiety, the social phobic will not experience that the distress diminishes by shunning behavior. The anxiety will  grow and be maintained by dreading the occasion in advance and by thorough evaluations of social events in hindsight.

Here’s what I wrote:

On the top of my head I think I was in an impossible and very difficult situation prior to the (CI) operation. I felt it was the last straw. It was unthinkable for me to become utterly deaf. There was only one option.

The process leading up to the operation was of course heavily influenced by the very long and exhausting waiting-time (more than 4 years). I spent my time as best I could; wrote on this blog, went to shrink, got rid of debts, had more time together with my son, found and lost one girlfriend, then found (and kept) another wonderful girlfriend , “worked on” my social network and family. Among many other things…

In the weeks before and after the surgery I wasn’t really worried, had great confidence it would work out. this confidence came from the vast knowledge I had acquired on the (CI) subject in the years prior to the surgery. I was aware there were pitfalls, but knew that if anything went wrong, they would quickly operate the other ear.

The surgery was relatively successful, apart from some problems with balance and sporadic tinnitus attacks. The problems with balance slowly dissipated, with a grand finale of a short hospitalization due to a complete failure to stand on my two feet one morning (3 days later I was good to go again).

Post-surgery the hardest part for me has been the tinnitus. In some periods my energy has reappeared in short glimpses, which delighted me greatly. But most of the time has been a struggle up-hill in regards tot he quality of the sounds which are still very much out of whack.

Tolerance for sound has been the greatest personal victory. The struggle isn’t completely over, but mostly I am able to keep the CI on all the time.

Tinnitus remains the big bad wolf. But with tinnitus-mastering course (type stress management course), a strong psyche and as a (very lucky in a global perspective) recipient of benefits from the Norwegian state I have reached all my goals. [more text after image!]

I have built a good relationship with my girlfriend, made a good relationship with a new extra son, moved in with girlfriend and totally renovated the new apartment. It has been exhausting, but with the right delegation of my resources and focus, and the newly learnt ability to say “no”, I managed to pull through.

It is with great expectation and with great belief in the future I now look forward to becoming a bilateral cyborg later this year.

These things just takes time…

Konferanse 1:

“Å leve med Cochlea Implantat (CI)
- kurs for voksne pasienter og deres pårørende”

v. Lærings- og mestringssenteret Rikshospitalet

Tid: 1. og 2. september 2010
Sted: Nasjonalt senter for hørsel og psykisk helse, Sognsvannsveien 21, Bygning 3, Gaustad.

Temaer: CI-prosessoren og programmering ved audiofysiker, utprøving av utstyr, tekniske hjelpemidler, brukererfaringer, utfordringer, forventninger og mestring ved psykiater, Hva er viktig i det daglige/hvor kan man få hjelp/rettigheter og om nyttige nettsteder ved audiopedagog, info fra Hørselshemmedes landsforbund (HLF) og fra Briskeby.

Det vil bli foredrag, gruppesamtaler og plenum. Det vil bli rikelig anledning til spørsmål.

For påmelding ta kontakt med:

Ellen Glåmseter
leder
Lærings- og Mestringssenteret,
tlf.: 230 70820 / mob.: 995 55 339, e-post: Lms@rikshospitalet.no

Konferanse 2 (mer informasjon følger etter bildet):

Sted og tilrettelegging

· Erfaringskonferansen vil bli holdt i lokalene til Briskeby Skole og Kompetansesenter AS i Lier.
· Vi har bl.a. et auditorium med plass til 80 personer, utstyrt med hørselsteknisk utstyr og teleslynge.
· Skrivetolker vil oversette direkte fra engelsk til norsk.

Dagene vil inneholde forelesninger av:
· Education tutor Mrs. Diana F. Harbor, Ear Foundation, Nottingham, England
· Audiofysiker Ole Tvete Øre-nese-halsavdelingen på Rikshospitalet
· Prosjektleder Marion Eriksen fra prosjektet ”CI-det du hører”
· Psykomotorisk fysioterapeut og bruker Inger Anita Herheim
· Audiopedagog Wenche Helsingeng, Briskeby Skole og Kompetansesenter AS
· Spesialpedagog Anne Elisabeth Strøm, Briskeby Skole og Kompetansesenter AS
· Overlege dr.med. Marie Bunne Øre-nese-halsavdelingen på Rikshospitalet
· Audiograf Gøril Haukøy, Medisan AS
· Brukere
· Nærpersoner

Temaer:
· CI-brukere og deres erfaringer med rehabiliteringssituasjoner i Norge
· Nærpersoners kunnskap og opplevelser
· Medisinsk oppdatering – hva er nytt?
· Tekniske nyheter – hvordan kan vi ta i bruk tekniske hjelpemidler?
· Pedagogisk rehabilitering
· Høretrening

Konferansen starter med registrering og kaffe 21. oktober kl 09:00. Forelesningene starter kl 10:00. Konferansen avsluttes 22. oktober kl 16:00.

NB! Deltagerne på konferansen må selv bestille hotellrom

Briskeby har imidlertid reservert rom på følgende hoteller:

Best Western Globus Hotel  (tlf: 32 89 04 00)
- 750,- per enkeltrom  per natt.
- 950,- per dobbeltrom per natt.

Rica Park Hotel (tlf: 32 26 36 00)
- 795,- per enkeltrom per natt.
- 1045,- per dobbeltrom per natt.

For å få disse prisene må du oppgi at du skal delta på CI-konferanse på Briskeby.

Elektronisk påmelding | Hvor er Briskeby?

Kontaktperson:

Aud Eli Thjømøe
Telefon:              32 22 65 21
Mobil:                  91 78 73 70
E-post:                 aud-eli.thjomoe@statped.no

So was the low setting any improvement? Well, both yes and no. It didn’t take out as much in the speech in normal listening environment, but also didn’t take out as much noise in noisy environments.

I will take it back to medium setting, and use it manually when I have a direct and pressing need for it.

So, Clear Voice™ simultaneously with my ability to speech read absolutely works for me in noise. I will use it for that, but not all the time.

I got a question from a reader who has an infant, about whether children should be fitted with Clear Voice or not.

Please note: My opinions are never absolute truths, please do not let my opinions be the only source for any decisions made regarding this or any other issues I might comment on.

I think that the brain learns to deal with noise in it’s own way. So infants or individuals who has never used hearing aids, might be better off not using Clear Voice in the long run. It will, of course, also depend on the future development of Clear Voice, but as it is today, this is where I stand. If you, the reader of this, feel like it’s beneficial for you, then I’m very happy for you, use it all you like. But for me it has limited usefulness. It will help me in extreme sound-situations, and it will help me combat fatigue (saving me from the most exhausting environments). But I will only use it occasionally, because I want to allow the plasticity of my brain to deal with “useless” sounds. I believe it will do a better job in the long run, than the Clear Voice has potential to do…

There are other settings and parameters in the Harmony software that can deal with issues of noise and speech comprehension. I will deal with some of those parameters in a later post (work in progress).

This especially applies when I become a bilateral implantee sometime this year… I have a theory things will be a little different when it comes to dealing with the world of sounds and speech in noise when I become bilateral…

More thorough thoughts, an attempt to clear things up

I have a few challenges while writing these blog-posts that delves into the technical aspects of the Advanced Bionics cochlear implants. The biggest challenge is represented by my lack of both neurological and technical insight and understanding. I had  mathematics, chemistry, physics and biology in Upper/senior secondary school, and believe I understand the basic principles.
As someone wise & famous (Socrates/Platon?) once said: “The more you learn, the better you understand just how little you know…”

Then comes the fact that I’m a person who likes to think in the big picture perspective, but to do that well, one needs knowledge on many things specific, too. My ambition with this blog is to be useful to as many as possible, to provide useful information that I didn’t find myself when I started the process of researching and understanding the subject of cochlear implants.

Subsequently I find the subject I write about, becoming more and more complex as I learn more about it. As an online friend of mine said; “After reading the CI MAPing book and after working with a few folks on their MAPs, I realized that setting a MAP has an element of magic & luck to it.  It’s not black & white.”
This is also my own experience. The whole “learning to hear again” – process is exactly that; a personal process. It’s not an exact experience that can be “applied” to someone else. Because everybody has different kinds of hearing histories, everybody will also have their unique process of adjusting to the CI. Yes, we can learn from each others’ experiences, but when it comes to doing the actual adjustment, it basically comes down to this:

1. Your ability to understand your needs (sound wise), and then to express your experiences and needs,
2. Your audio physicist (person who makes adjustments to the CI parameters) ability to understand and translate your expressions and thoughts into suggestions and actual changes in the software parameters.

I do get feedback that people find my posts useful, so I will continue with what I do. I wish people had more critical questions, that is very much welcome in my blog! I often feel my thoughts on these subjects (CI) are “halfway”, unfinished, lacking etc. It is in contact with other peoples minds I find new and supplementing thoughts and I feel I move forward in this “Project: Knowledge and understanding about all things CI”

But; it is not perfect. It is designed to do it’s job in noisy surroundings, to help bringing out human voices, and that is one complex mammoth task! In order to be perfect, it would need to have a conscious intelligence, and that is as far as I know, still science fiction. I know next to nothing about the workings of this piece of software, so I will end this paragraph with a question: Does anyone have information as to the programming language and the algorithms used? Is fuzzy logic part of this software development?

I notice its imperfection in the absence of heavy noise. It takes away some information in speech which actually makes it harder for me to comprehend and grasp sentences. It kind of lies in the nature of the program; it is designed to remove some sounds, in which most of it is useless to the implantee. It depends on the nature of the noise. But of course, some of the frequencies the noise consists of, also is in the speech frequency range. Thus the software has no “choice” but to reduce some of the speech sounds too.

Clear Voice will occupy one of the program slots (Harmony only has 3), but since I so far only had use for 2 programs, it’s more than welcome I often switch program, and then forget about it. That is also my problem with Clear Voice; in normal private surroundings, the voices become somewhat garbled and harder to understand. It takes me a little bit of time to remember to switch back to my primary program without Clear Voice to get back to “normal”. This is my own problem, in reagrds to switching the program and remembering to do so, but it’s still an inconvenience.

In real noisy environments, this application has already become essential to me, nothing less. I can listen better and speak more freely while driving the car, it’s easier to have a conversation on the phone while in the shop, out on the street or in other crowded public places. It takes away A LOT of the effort I previously needed to put into understanding speech in noisy surroundings!

It is my hope that this piece of software will save me from fatigue and help me heal more and better/faster in terms of prolonged exhaustion.

Clear Voice does not cure my tinnitus. It’s funny when I think about it, but some of the noise I hear, also in noisy surroundings, is actually my own tinnitus… Clear Voice will, I believe, in the time to come, help me understand better the effect my tinnitus has on me in various sound surroundings. I have a theory that the tinnitus worsens in noisy situations, because noisy situations induces stress (why wouldn’t it?) But since the CI is a powerful nerve stimulator, it “drowns” or masks the tinnitus to the extent that the brain doesn’t notice it. But that doesn’t necessarily mean it’s gone… That depends on the origin of the tinnitus; does it emerge from the brain, or from the other parts of the nervous system?

I will use Clear Voice every day, and I will probably become better at remembering to switch the program on and off, as I grow to get used to it. Definitely a recommended piece of software for anybodys Advanced Bionics CI.

End of review, and over to the other things:

I a currently in the process of establishing a new place of residence. It was a worn down flat, which my girlfriend and I bought relatively cheap, and are now well underway in renovating. We’ve ripped the place apart, short of the walls and ceiling. Everything else is new. New coat of paint in ceiling and on walls (on top of new glass fibred wall paper), new wooden floor, new doors, new kitchen, and to top it off, we hired a bathroom renovator specialist to take care of the bathroom and WC.

In the midst of this, we have been moving all of my girlfriends stuff, and are still working on my stuff. So now you know why it has been silent on this blog for some time

She has many lists of similar sounding words. On these lists are pairs of words with just the one vocal that varies. She speaks both, and then repeats one of them. I then say back the one repeated word, as a control. Mind you, I am a lip reader, and listening to words without the aid of lip reading is a hard thing for me to do

“De-learning” lip reading

For me this training has as much to do with learning to trust my hearing and not use my lip reading skills, as it has to do with actually hearing correctly… I’m de-learning lip reading to some extent! My brain can now utilize the hearing and let my eyes (and brain) relax a little bit more, but it needs a little help to get there

What we did during the first session after the tune-up, was to go through this one specific list. It felt hopeless, and I struggled with almost all of them. That was a kind of a baseline for me, I knew it would be better in time, but knot how much better. In the following 4 sessions we started off with that very same list.

The feeling of success

And last week I managed all the words, rather effortlessly (they are too difficult and random to memorize). That was such a sweet moment Really sensing, feeling and getting proof that I’m doing some real progress. That, I feel, is really important to me these days. To keep going for the best I can get… I’m not quite there yet, where I want to be, but she told me that I’m already doing better than most cochlear implantees. At the same time, she said that I’m the one who decides what the limit is. My goal is to be World Champion in hearing with CI.   No reason to be less ambitious.

I find the sessions very useful, because what I need the most right now, is to start to trust what I hear again. If the spoken sentences doesn’t match my own expectations (or experience or intuition), I doubt what I heard, and are thus “hard of hearing” again. It’s like my brain is taught to be deaf, and refuses to take the sounds for what they are. And now I have to teach it to become hearing again I can understand why my brain still is distrusting the sounds I receive, after all those years of near deafness.

How my brain is wired

I also discovered a third interesting thing about myself and how my brain is wired. In these lists where she reads pairs of similar words to me, there are sometimes words that are names, numbers or unusual forms of words. My brain works out based on some parameters. In this instance, with the lists of words; I look for phonemic similarities in a database much like a dictionary. But the way I look for words is by way of writing. So if a odd variant of a words appears, I struggle, because my brain wants to have confirmation from my database. I hear correctly, but are unsure because the odd word doesn’t fit the pattern (i.e. plain words). If one of the words in a pair is a number, I look for the confirmation in a dictionary, and come up short, since the spoken word is a number, which is NOT in my “words” database. (it is in my “numbers” database.   )

I had not thought about this issue from the aspect that Richard offered, which is such a beautiful thing about this form of communication (i.e. blogging); one thought or experience leads to another thought. Richard puts it so well in his letter, that I put it here, word for word. (Richard, you should seriously think about writing your own blog   )

As a comment, I would like to say that this issue, even though I didn’t realize it until I read his comment/letter, was one of the major things I worked with during the two years of psychological therapy I underwent in 2006-2008.

(I underline the good stuff, which I found particularly interesting, add links and images which I find suitable (for your viewing pleasure ))

So, here it is:

=====Start of letter======

Dear Ulf,You are incredible!

You are standing on the edge of the abyss and you are not doing what 90% of the people in your place do!

What is it that they do and you are not? They sabotage themselves.

How? By bringing this audism (which we absorbed when we were hearing people) into their new Late Deafened World and using it to attack themselves. 

Expectations!  Exactly!  We bring with us, these expectation of the hearing world we grew up in, with us as we lose our hearing.  We feel defective, broken and stupid.  How many times, while you were growing up, did you hear, "What’s the matter with you?  You stupid or something?" 

This attitude, this perspective is that we are broken and we need to be fixed.  We need to be made to look and act like all other hearing people.  One of the destructive expectations we bring with us is that WE MUST FIX OURSELVES.  That we must make ourselves look and act like hearing people.  The key to this that we must, "…respond appropriately". 

That means that when someone talks to us, that we say the right thing back.  Our efforts at bluffing were a desperate, destructive effort to make ourselves at least look like hearing people.  I felt shame and guilt when I bluffed but I couldn’t stop myself. 

This is the crucial meaning of language.  Language is that thing that connects us as people.  Language is the foundation for intimate relationships.  Between parents and children, between lovers and between individual members of society. 

If we have an incomplete language, our relationships suffer. Hearing people don’t understand this.  That is one of the basic parts of Audism. 

That is why sign language is so important to the Deaf community.  Language also, by itself, organizes the brain.  The onset of language (about 2 years of age) helps to structure the development of the brain.  Missing this stage of development results in difficulty in developing critical thinking.  The ability to understand abstract thought suffers.  A visual language,
such as sign language, manages to accomplish this just fine.  The brain cannibalizes the unused auditory pathways for other things.  So, where am I going with this?  I’m going to the Late Deafened World. 

We have three worlds (actually more).  The hearing world, the Late Deafened and HOH world and the Deaf world.  I have chosen first to define myself as NOT HEARING.  I have also chosen to define myself as not culturally Deaf.  I do find myself in this middle world, which overlaps both hearing and Deaf cultures, this Late Deafened World. 

We have our behaviors which are common to us.  We have our language, which is a patois of coping strategies, hearing, perhaps some sign language and whatever works.  This is the question of identity.  We have our personal identity (that which distinguishes us from others) and we have our social or cultural identity (that which connects us to others).  As we lose our hearing, we lose our cultural identity. 

If we do not re-adjust our cultural identity, we will find ourselves trying to become something we are not.  We will find ourselves trying to be hearing people, which we are not.  The result is loss of happiness, joy and serenity.  By understanding I am not hearing, I have found far more joy in my life than I ever thought possible.  I do a lot of service in the hearing loss community and it gives me a wonderful sense of purpose and a profound feeling of joy.  I know that I am in exactly the right place, doing exactly the right thing.  I have written a number of articles for the ALDA (Association of Late Deafened Adults) newsletter along these lines.  I suggest you read a book, The Mask of Benevolence by Harlan Lane (Ref. Amazon).  He talks of audism….and you are doing exactly the right thing and I support you completely!!!!

==== End of letter ========

My own reactions:

Even though I have a good vocabulary, used to read a lot of books, and thrive on expressing myself by way of writing, and pretty good at saying things out, I often feel like I’m an alien when it comes to verbal communication. I often hear that I’m difficult to understand, and I also often feel it’s difficult to understand others (and I’m not talking about HEARING). It’s like I’m a Mac computer trying to talk to Windows computers. A little bit incompatible.

I had a exchange of words with Richard after his lengthy comment, and in short we touched another issue that I feel has a place on this page: we both felt at a stage in our lives, that we had to ignore what everyone else think about us. There are many reasons for a person to take such a position; but the main thing is: it’s about survival as a psychological entity in society in a situation between rock and a hard place… At one point we found out that we had to BE ourselves in our OWN image.
In that realization also came a huge personal relief: no more trying to make others accept us. Either they will, or they will not. It’s as easy AND HARD as that…

How to cope with the expectations of oneself and those around you, while at the same time, the hearing is going (or gone), and thus, a large part of your identity as well as capability to interact socially (i.e. being your social and cultural identity)?

The previous paragraph is a rhetorical question meant to provoke thought. My personal answer to it is that it depends on which stage you are in the process of acknowledging and accepting the fact that you’re either going deaf or already is.

My relationship with a truly wonderful (hearing) girlfriend has also given me thoughts on this subject:

My girlfriend is forcing me to rethink that (the previous paragraph about the rhetorical question) a bit, because, if I want to be successful in what I do and with whomever I meet along the way, I have to develop a sensitivity of manners and general behavior (i.e. care about what others think about me.)

It’s not easy, and it’s not done in a month or three. But what is great, is that the CI now enables me to focus more on that, rather focus on just “surviving”. I’m only just beginning this phase of my life

I have also found refuge in my common peers, i.e. hard of hearing, late deafened or CI-users. I feel free in their company, but at the same time, I look for that feeling with everyone else in my life. That is what I wish for…

Total understanding and self acceptance for everyone!

I feel less commitment to this blog now, and for that I’m sorry. But as things develop in regards to the CI, so does my life. The hearing falls slowly into place, and I can start to concentrate on other more “mundane” (but still very important!) things   This is a good thing for me, not so good thing for this blog. But, as CI 2 comes through, I’m sure I will get a need to make more blog material for myself and the world to ponder upon More will surely follow soon enough.

It’s now around the 8 months post-activation milestone. The 6 month adjustment gave me a small bump into distress and psychological reactions, mostly due to the fact that I raised the overall sound-levels, AND increased the IDR from 60 to 70 %. IDR stands for Input Dynamic Range, and determines how much of the full sound spectrum I get delivered. 100 is a full spectrum, while 50 probably has 25% cut of from both the low and high frequencies.

(not totally sure about those last numbers concerning IDR, but I believe it to be the case. Please correct me if I’m wrong.)

I still struggle in noisy environments (looking SO forward to getting bilateral again! Hence the x-ray picture   ), but now utilizes a preprogrammed setting that uses IDR 50%, which cuts down some of the high consonants from speech, BUT reduces “destructive noise” (in terms of speech comprehension) even more, making it possible for me to last a little bit longer in a multi social context (ie. larger groups of people).

Despite the aid of the IDR at 50%, I get really tired. I need one or two days of recovery after a 4 hour big-family session. This is a big improvement from before, mind you! But it’s evident that I still need more time to adjust and learn how to cope in various situations.

Tinnitus stress management conclusion: better!

The tinnitus stress management course I attended really has paid off! I recommend it to everyone with hearing problems, as having a bad hearing causes so much distress and problems.

For me it has led to a better life. Just as all the other small things I have improved/changed in my life, stress management has lessened some of the burden on me being deaf and enduring the torments of tinnitus.

Tinnitus now gets less attention by myself. The techniques I learned has somehow taught me to primarily prevent tinnitus to get started due to high levels of stress and fatigue, and also to stop it and react in a positive way when it rears its ugly head. It’s a mere notion of that the tinnitus is sounding, and I utilize the relaxation technique and think about something else. I’m so happy that the mini-course gave me such great effect. I feel like a better and calmer person too.

It was some effort invested, but totally worth it, take it from me!

They’re both auditory sensory related, but have some significant differences.

Tinnitus is best described as phantom sounds. The sounds are audible to the one affected individual only, and there is no way to measure tinnitus scientifically. Only thing I can think of, is if they put me in a MRI-scanner for real-time recording and measure the activity in the parts of my brain that deals with audio-interpretation. Rather complex, I would imagine.

Tinnitus is a very subjective experience, someone might have a very high threshold of coping with heavy amounts of tinnitus, while others gets really disturbed and cannot deal with it. Tinnitus can destroy peoples lives. Psychological disturbances and substance abuse (to “num” the tinnitus, or sedate the brain in order to be able to fall asleep) is likely symptoms of severe tinnitus.

Tinnitus can sound like everything. To me it has varied, it has become better on the ear where I received my first CI, but I still have tinnitus there. Right now I have a triple-tinnitus: left ear (without CI) I can hear this hum (high current electrical power station or electrical relay station humming) as well as a sound that is resembling to a constant howling snow-storm. My right ear is pretty well masked by the CI, but the humming might appear when I’m tired, and at night, when I take off the CI, I hear this kind of FM radio crackling noise. At the worst, it is an unbelievable cacophony of all sorts of sounds. Sometimes I think I even hallucinate tinnitus while having tinnitus. It’s hard to grasp, since it is a “phantom”. It is synaptic neuron activity in the nervous system, (of which the brain is a part), which in turn is interpreted as sounds, when it is in fact NOT sounds. How weird isn’t that?

Recruitment is something else; when outside sounds enter my ear canal, and then causes vibrations to the drum and consequentially the gel-substance within my cochlea, the hair cells are triggered. Upon this triggering, the “recruitment” happens due to several factors: too much dB (meaning more energy than the hearing sense can or should handle), and massive loss of hair-cells (the destruction of hair-cells can be caused by a number of reasons: ototoxic substances, overexposure to too powerful sounds over time, various diseases that affect inner ear physiology, physical damage (violent accidents) and progressive hearing loss.

The cure?

Tinnitus has no cure, other than learning to live with it by way of stress management, and some mental tricks to take control of thought patterns and secondary reactions to the tinnitus. Everybody can learn to live with tinnitus, and can have a good life with it. Substance abuse is NOT a solution, it is only slow suicide. Seek help from professionals! If your doctor doesn’t take you seriously, go to another doctor! Do that, until you’re taken seriously!

As for recruitment, there are solutions to remedy the situation. Turn off amplification equipment like hearing aids when experiencing it. Turn the sound down. In my case, the recruitment was so bad, that when adjusting my hearing aid to a comfortable level, I felt I didn’t hear anything anymore. I have endured recruitment for so long that I had gotten used to it, and even built up a tolerance for it!

In severe cases, get a Cochlear Implant in order to provide sufficient electronic delivery of sound signals to your auditory receptors, aka hair cells.

Kim’s post send me here, and I really like your post.  What gets me amazed is that I do have that problem some of the time and I never knew there was a word for it! 
Do you have implants now? and, if so, does it helps get rid of recruitment?  If it does, then it would be a good reason for me to get it and stop procrastinating! 

Instead of answering Candy directly, I think everybody who has read my original post about the phenomenon called “recruitment”, also deserves to see my response:

Yes I have one CI now, and expect to get the second sometime this summer.

After the first CI I went back to adjust my last hearing aid to fit comfortably sound wise. I had not been able to wear both the HA and the CI, it turned my stomach inside out.
I had not used the HA for almost 4 months, since I was very focused on getting up to par with the new CI. I tried occasionally, but took it out again. Hence the needed re-adjustment for lower sound.
They told me afterwards, I had asked to get the sound reduced 20 dB! That is a lot of sound (pressure)! I can now wear the HA, but I don’t get much out of the HA alone. Together with the CI it might fill the deepest bass-part of music, otherwise it’s useless for me. I don’t wear it, since I love to be free of the ear-molds! Finally no more itching, oozing, rash and whatnot… Dry comfortable ears after more than 30 years of chronic skin problems in my ears. Hooray

Most hearing aid users with progressive hearing loss (slowly reduced) tend to, like I did, to maximize the hearing aids over time. I asked for so much sound in the end, that it actually was TOO much.

I think I turned my hearing aids so loud that it in turn gave me the tinnitus-problems I later and now still struggle with…

I did not know that then, but understand it now, in retrospect, years later, after being burnt out, and gone through some rough times. I wrote a lot of posts about this process, you can check the back-log of my blog for those stories (sorry about the amount of material, and that it is no index or anything like that   ).

Candy, the recruitment problem is gone now. The CI helps me to hear and understand speech. It is now, more than 6 months since activation, on about the same level as I had with two HA. And with a lot of time and room for improvement yet to come   (that’s the best part!)

BUT, I have to tell you; it’s not a walk in the park. It’s a major head surgery, and the rehabilitation and sound training afterwards takes years! It takes it toll on you  and your loved ones around you. My personal experience is that I had an emotional and psychological roller coaster. It was not fun for anyone. I don’t want to paint an unrealistic picture of the ordeal, because it really is the last resort! You ask for CI when it costs you too much to use HA in everyday life.

I wish I had asked for it before I went over the burnt-out experience, maybe I would still be in the ordinary working life today. And maybe I could have saved myself many sad and difficult moments. But as they say; it’s no use in crying over spilt milk. What has happened has happened. It didn’t kill me, it just made me stronger.

The CI has already given me a better life, getting rid of the recruitment is a huge part of that!

I’m looking forward to getting my second implant, and certainly looking forward to harvest the benefits of becoming bilateral, especially in difficult and noisy sound surroundings.

Hope this answered your question, Candy?