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How am I doing, 8 days after bi-lateral surgery

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!!! ♥♥♥

Second implant in place

The second implant is now in place, and all went well. Today is 2 days after operation and I’m a little dizzy and not feeling great. Almost like a little hangover. I didn’t sleep much the first night, and avoided sleeping during the first day. I slept through last night, 9 hours.

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

Michael Chorost explains the concept of Cochlear Implants.

The Author of “Rebuilt”, Michael Chorost was recently captured in a video interview published on YouTube. I found his explanations so elegantly put, that they should be viewed by everyone interested. A lot of information, but at the same time, very elegantly put and easily understandable.

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

Unrealistic Expectations from the World? Audism?

What do people expect from me? They expect me to participate in social activities and to be part of the “common consciousness”. That is a fair expectation in my opinion. In this blog post I want to take a look at some circumstances and  obstacles concerning these expectations. I think it will be wise to read the definition of some of the words I use, they are linked, as the word “expectation” was just linked.. That way we will be on the “same page”.

In this aspect I am thinking about what we expect and when we expect it in terms of my hearing progress. This is also a sore and difficult point on my behalf, since it is much about social interaction and how I am perceived socially. How I am viewed as a person.

As I’m going the path of CI rehabilitation and re-learning to hear, I am doing some discoveries about expectations of my recovery from both myself and others near and dear.

Me, a social outsider

All my life I’ve been a part of the hearing world, and thus a social outsider. Even among my closest friends and family, I got and still get, remarks and comments that hurt to the core of my being. I’m sometimes left with a feeling that people suspect me of WANTING to be isolated or withdrawn from issues that are talked about. I often feel misunderstood and misinterpreted. For instance my withdrawal from social events is sometimes being interpreted as a lack of interest, or attempt to socialize. That is so unfair and sad. I’ll explain why…

The more people talking at the same time, the more impossible it is for me to interact in a meaningful way. Believe me when I say I really wish I was able to interact with others on their terms, but there is a huge damage in my hearing that makes that incredibly hard. There is a limit to everyone’s mental capacity and endurance. My limit is shorter than most in terms of social interaction due to the nature of listening and understanding.

CI-activation log no. 7 – day 12 – first re-mapping and feeling of first real breakthrough

Wow, has it really only been 12 days since I walked out from the hospital fitted with a new bionic ear? It feels like a much longer time ago, and so much has happened! Both in my inner self and with the CI-hearing!

I hear trickling and splashing water from fountains very good, and I have noticed a significant “sound shadow” if I turn the non-CI-ear towards the sound source. In that “Sound-shadow” the sound disappears almost completely.

Yesterday I heard a bird twitter for the first time! (I probably have a recollection of that sound from early childhood, because I had strong suspicions what that super clearly defined sound was 🙂 it couldn’t be anything else!) I asked my girlfriend, and the next time the twitter came, I gave her a signal, and she nodded with a big smile 🙂 It was birds twitter from outside all right! That was a wonderful CI-moment! Now I look even more forward to go to Sweden again next week and just discover more of mother nature’s sounds! (and listen to my old 80’s-vinyl!!! My son is going to be SOOO annoyed by his fathers thirst for his old music!)

But, HEY! I’m getting ahead of myself here! Before that beautiful CI-moment, I was so lucky to be able to get a quick new mapping-session at the hospital. Kudos to the CI-team for being so flexible and giving me a new session with only 4 days’ notice! (usual takes 14 days) This time I got a sound-fitting from a new guy (my regular was sick), and he tested my threshold for each of the 16-electrodes (I think it was). I came to that session with two clear goals: increase sound level overall, and to get a better feeling of that much missed bass.

The missing bass has been really noticeable when I listen to my favorite Mötley Crüe songs: “Shout at the Devil”, “Girls, Girls, Girls”, “Kickstart my heart”, “Same Ol’ Situation” and “Smoking in boys room” (I’m THIS close to be able to grasp the harmonica-part in the “Smoking in boys room”!). I retrieved my car’s subwoofer from almost three years of storage, and has been experimenting with the sound settings both on the car’s stereo and on my CI and in combo with my hearing aid. Hearing aid is not used for music, the recruitment-problem is just too much; sure, the bass is wonderful on that ear, but everything else is just muffled, distorted and just… LOST  😦

The subwoofer taught me a valuable lesson: I can “hear” the bass through my body. My hearing aid-ear (with the hearing aid turned off, and earpiece blocking the natural airway into the ear canal and the ear drum) actually used the bass-vibrations I got from the subwoofer and blend it in with the sounds I got from the CI. I suspect my whole body “hears” those thumps and “phat” beats. It’s also the issue of bone transferred vibrations to take into considerations :-)  If the sound pressure is big enough (i.e. enough dB), I guess the vibrations get strong enough to be transferred into the cochlea by other means than through the ear-canal…

Also I have been playing with the iConnect, and that contributed to my understanding of the phenomenon regarding the sensations in the bass-frequencies. The bass was totally missing when listening to the same songs from my mobile (Nokia N82 with jack-plug, very useful :-)  ). When the sound input to my brain are 100% digital, it’s brutally truthful too… No other aids like air vibrations, or sound residue from the remaining deaf ear. Or unconscious lip-reading, with built-in context guessing plus sentence construction for that matter.

The songs I listed above, are so well known to me, after listening to them a million times in my youth and throughout the years. They still give me a kick, even if only hearing 20% of it 🙂 (or are just beginning to) I have found them extremely useful for training and identifying which sounds I get and which sounds I don’t get. Vocals have improved, and high pitch has improved. The missing part was the bass…

I threw the 16-electrodes-program out. Bye, bye. It doesn’t sound good at all, already, so I have absolutely no need for it, except maybe for later when I want to assess my 16-electrode hearing again… But that’s not for another 6 months or maybe even a year. (if ever)

Program 1 is my primary program, and this time we raised the bass and the mid-level frequencies as a result of the single-electrodes-test. The high pitch (is this the right phrase?) was left as is, since I get those sounds really well. After that we raised the overall levels quite a bit, I imagine (will get the documentation later).

Program 2 now has increased bass-levels. I have strong suspicion I will use that a lot with my mp3-playing mobile phone…

Program 3 has increased levels for high pitch sounds. This will be used for training purposes (increase my ability to take in as much high pitch sounds as possible, since this part is what really makes my head tired, and it’s the sounds I have lost in the last 10 years.)

OK, that was the re-mapping session. Now for the real results:

Music is beginning to sound real again! I could detect (through the iConnect), some of Tommy Lee’s beats now. I still miss Nikki Sixx’ bass, clearly defined, but hey, it’s only been 12 days! I’m not complaining, but I know where I want to go and what I want to get. Even Mick Mars’ guitar is starting to emerge from the sound wall!
Best part of all; I’m getting a feel of harmonies in the music again! Sounds and instruments working together where the end result is far greater than the actual sum of the combined instruments…

I am now able to understand, with the aid of lip-reading, sentences spoken by my girlfriend! Haven’t tried it really hard today, been too much else going on, some work that needed getting done, cranky kid in the house, listening to birds twitter and all 🙂

In all fairness to Mötley Crüe; it is a coincidence that I happened to have their music on both my mobile phone and on mp3 in my car. It’s simple, energetic music and with Vince Neil’s rather boyish voice that breaks through the sound wall from the instruments is perfect for me to train my bionic hearing on. Will keep working with Mötley Crüe for listening training until I get sick of the songs. They have been, and will always be a big part of my musical life.

Aaahhh, I look so much forward to revisit music again! It’s certainly coming alive! Right now it feels like my brains’ got some rusty, creaking parts that only needs greasing! Good thing I like mayonnaise, diary butter and the fat greasy parts off the chicken, fish, pork/lamb chops or steak:-)

I’m definitely on the right track! And perhaps now I can concentrate more on training for the verbal understanding to increase.

This is the point where I for sure can say that my decision to go for CI was a good one! All the pain, all the obstacles, all the waiting, all the crying, all the frustration, all the anger, all the angst, all the hardships has been worth it. I did the right thing!

Today was a good day 🙂

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

CI-activation log no. 1 – day1 1st impressions

OK, finally activated!I’m only one hour into my CI-era, and I sit at a hospital canteen-table next to my good girl, Mette. Her hand is lying warm on my thigh, relaxing me.

I start off very easy, all my sound settings on the Advanced Boinics computer programme “Soundwave” are set at the bottom. It seems I’m able to pick up auditory nerve signals very good. Meaning that I’m sensitive to them. That’s a good omen in my book.

I’m very conservative in terms of setting the sound too loud, many thanks to Abbie who wrote a post about overdoing that part meaning to be offensive. It ended up with her getting an overload.

But in the 15 minutes from my audiophysicist said that now was the time for my first venture out in the audioworld with my new cyborg ear, I discovered that I had maxed out the volume already. So before we went out the door, he made a second programme with an overall higher volume. I have now had that programme on and the volume wheel has been cranked to max. Looking forward to get back to adjusting in more details at noon today (45 minutes from now 🙂  ).

Will be exciting to see if all frequencies are just as good, or if some frequencies will need more/less amplification.

Sounds I get now is just morse-code. It literally sounds like morse code. My own voice is like bip-bip-beep-bip-beep-beep.
Sounds I have received as morse code so far are voices. My own voice, Mettes voice, and the audio physicists voice, and faintly other peoples voices. Cars, trucks, trams and buses don’t give me any sound sensation through my auditory nerves. When I closed my eyes I could sense the sound of the powerful sit-on-top-drive-like-a-car lawn-mower 10 meters away through the air-vibrations hitting my body… No auditory response there.

I had my first-CI-moment: I detected the sound of my own shoes! It came through like this beep – – – beep – – – beep…..  I stomped my feet, and yes, there it was; beepp — beepp.

It’s a strange sensation, it’s almost like a submarine sonar giving off it’s ping sound: PING! ——  (and the weaker echo comes back: bip). Feel like I hear what’s NOT there instead of hearing the actual sound… I know intellectually that it’s my brain trying to make sense of the input, but I have a need to express these sensation in words, I want to remember them and share them…

I found other CI-users  explanations and variations in sound sensations very interesting. And because I read them, I have been very well prepared today. I’m not afraid, I’m just curious on how my adventure will turn out to be, and I enjoy every new discovery, such as the beep-beep of the chairs being moved here in the canteen. I had morsecode telling me that some sound was being emitted, and I looked up at the guys at the next table  and they were laughing loud.

Yes, my CI is already doing me a service. It can tell me that there are sounds out there.

The tinnitus is roaring constantly, but the morse-code is louder.

I’m tired already, every bip-beep makes me feel slightly nauseous, on the verge of making me dizzy. Think I’m doing pretty well so far. Beeps come in from all sorts of sources, and I detect the beeps and bips.

Time to give myself a little break.

Goodbye old life – Hello new life! (?)

Wow… I’m still here!

More than 4 long years after the neurons (picture on the left) in my brain formed the thought of getting a Cochlear Implant for the first time, I’m finally here. At the doorstep of a new reality. A new perception of the world of sounds promising improved social interaction and perhaps even music.

Back in 2005 my son had his first day at school, Microsoft’s Windows Vista was still to be officially launched, Pope John Paul II had just died and Pope Benedict XVI became his successor, the superjumbo Airbus A380 had it’s maiden flight from Toulouse, the Kuwaiti women were granted the right to vote (on my birthday), Lance Armstrong wins his 7th (and so far the last) Tour de France and the hurricane Katrina wreaks havoc in the US city of New Orleans and surrounding areas.

Now, in 2009, my son is in 4th grade (!), has a new set of front teeth and has grown almost 50 cm, Windows 7 is just around the corner, Barack Obama is the new US President, Lance Armstrong made a comeback to Tour de France and the world is desperately trying to shake off the effects of the worst global financial recession since 1930.

This time of waiting for CI has been hard and exhausting. I want to direct a very criticizing finger at Norwegian health authorities (forget about party-lines, this goes for all politicians and all policymakers!):

It is de-motivating, devastating and beyond understanding to have to wait 4 years for a life-improving sense enhancing procedure such as the Cochlear Implant! It is counter effective, both in terms of pure financials for the society and in human capital. Instead of returning quickly to a productive life and continuing as a healthy member of the taxpayers force, individuals such as myself are forced into years of life suspending professional and personal social life hibernation. It is such a place where the personal price is high, and the society’s costs are growing into grotesque proportions!

I have a 3 point petition:

1. Sense improving technology such as the Cochlear Implants is the future, embrace it! Build and strengthen national CI competence right now!

2. Stop being afraid it costs too much! In the end it costs much more to stall, let alone not doing it! It’s plain common sense! It is a CHEAP investment into human capital! Build for the future!

3. Grant all who might benefit from it, bilateral CI! In return I can promise you happier and much more productive deaf citizens of Norway!

I can’t say that the 4 years that has passed since my brain created the first thoughts about putting a Cochlear Implant into my head has been boring, far from it. They have been eventful!

Related to my condition; I went through 2 years of psychological therapy, countless visits at the hospital asking about when I could get the operation done (nagging), I said goodbye to my beloved music, I went through many life changing decisions, all in order to survive and maintain a life in order to be able to father my son the best I could and to remain sane, healthy and alive.

Yes, it’s been the fight of my lifetime so far! I had many small and big defeats, such as the day I admitted to myself that I was no longer fit for the A4 working life, or when I had to accept that I had to wait 4 years for that life-changing all-important cochlear implant…

But it’s a lot nicer to count my victories 🙂 I remained on my feet, I did not succumb to self-pity, I have been a somewhat decent father to my beloved son, I actively worked my brain from a medium depression state into a better functioning state with a more realistic view of myself, the world around me and it’s expectations from me. I made my life better, in spite of the borderline progressive deafness and it’s challenges. I lived my life to the maximum of my capabilities. I started my own company (in order for me to be able to work as much as I could/can). I got closer to my family and I found a very promising life-partner! I did not waste my time :-)  Sometimes challenges bring out the best in you.

At last, but not least; this blog has been my salvation, brainchild, hope and joy. I started ci4me2007 in the last weeks of 2006. I had such high hopes for it to become the year that I would finally get my CI. Now, 157 (counting this one) posts later, with 45.000 accumulated views (that means 45.000 opened pages), it’s almost nostalgic to look back. I wonder what will become of this blog now.

A new chapter in my life begins the day after tomorrow. I owe the ones that are next in line for CI, wherever they might be, to be able to access my experiences both good and bad, just as I have been able to read about Michael Chorost (read his book!), Jennifer, Abbie, Sam, Jeff, and many, many others, and more recently; Kate, Movale, CIborg.

It’s time to walk through that door of perception, and shape my new world, and my life along with it. Wish me luck!

See you on the other side! 😀

Diving with HIRes90K?

Have had a long wait for answer about my question about diving with the HIRes90K implant. Both sources have given me the same answer, Advanced Bionics has tested the implant to only 2 ATM, equivalent to 10 m below surface (33ft). With “no plans to change the recommendations”.

I find this very dissappointing, since I’m into diving, have had the PADI Open Water divers certificate for more than a decade. Whenever I travel to exotic locations, I do my outmost to dive there locally.

Previous experiences has been:

The island of Roatan in Honduras (PADI-certification, great corals and animal-life)

The Red Sea just outside Hurghada in  Egypt (went to a partly polluted dive-site, a bit destroyed corals and garbage, but first dive with underwater camera and decent animal life)

The famous Aliwal Shoal in the Indian Ocean – South Africa (my first encounter with ragged tooth shark, and swimming with sea turtles! Very difficult conditions, very technical dive.)

I was hoping to continue this fine way of experiencing a very different and wonderful world in different parts of our great blue planet…

Does anyone has any insight into this? Can we ask Advanced Bionics to do further tests in order to perhaps tell us it’s safe to use in even greater depths? (Like 18 meter which is the limit of PADI Open Water diving…)

Any experiences with diving with cochlear implants? Please leave a comment if you did, or know someone who has been diving with an implant…

On the operating-table

First of all: I had the fortune of being accompanied by my girlfriend throughout the ordeal. Thank you for being with me; Mette! Love you hon! We got up at 0530 in order to be present at the hospital no matter what at 0700. This was the day I had been waiting for for 4 years!!! No food and no liquids for me. No traffic, smooth, unstressed morning. I was a little nervous and scared. Found great comfort and support in you, Mette!

Upon our arrival 20 minutes early, the halls were empty, the light over the reception desk was turned off. It looked like the hospital was closed! Hmmm :-)  We walked a bit, aimlessly, but soon enough, hordes of hospital employees began to arrive in groups as buses and trams offloaded just outside. The hospital slowly became more and more busy. We were greeted by a nurse who gave me a bed, a hospital shirt and 4 pills. I changed into the shirt and swallowed the pills right away. Good boy 🙂

Wham! It took me 10 minutes to loose consciousness, right in the middle of writing a text message on my mobile (I found it in the Drafts-folder later :-)  ). My memory has failed me from this point onward. Luckily my girlfriend was there and has “recorded” all important information. However, she didn’t like it when the pills forced me down. “It was as though you died”, she told me… I can’t even remember meeting the surgeon, whom I had looked forward to talk to about several things. All I had in my mind while trying to fight my painkiller/valium-induced sleepyness was how long it would take before I could go splitting logs of wood!!! (I even asked the same question the next day upon waking up from the narcosis). We had a few laughs over that one 🙂

I have a flash of memory arriving at the OR, shaking hand with the anesthesiologist. A huge operating lamp looming over me… And a nurse preparing for the procedure. I said something, but can’t remember what. I was really far out there even before the narcosis. Tuned out.

 

Post-Op

Then the post-op awakening… I couldn’t believe I was already through it. For me it felt like I just dozed off from the pills. But I was gaining consciusness so slowly that at some point it dawned on me and I just felt relief.

The nurse asked me about pains, and suddenly I noticed I had my hearing aid and glasses on, just as I had asked for before dozing off earlier that morning. That was nice :-)  I could understand the nurse, even though she was swedish. Lucklily I have spent many summers in Sweden throughout my life, have no problems understanding it. Well, the nurse asked me about the pain, and yes I was in pain. How much pain, she wanted to know… On a scale from 1 to 10… I answered 4, I think. It wasn’t bad, but I could definitely feel pain.

She then injected that nice hospital dope… And my pain was down to 1 or 2…  No problemo 🙂

I sat up a little bit, and less than one hour after (my bloodpressure was taken automatically every 15 minutes, and I counted three of them) I was clear enough in my head and needed to see my girlfriend badly 🙂 I was wheeled out and returned back to the the same room I was given that morning. And no girlfriend there… As I immediately asked after her, she appeared in the door. A lot of emotions flowed through me at that moment. A lot of relief, gratitude and sheer great love…  A nice looooong hug…

The surgeon came by a little later, and in my memory that was the first time I shook his hand and saw what he looked like. A very mild and friendly gentleman by the name of Prof. Claude Laurent. To whom I’m forever grateful for his professionalism and expertise!

The surgery had taken 4 hours, even though they had booked the OR for 2 hours. I have not as yet queried upon the reason for the prolonged surgery. My girlfriend was a little worried, but luckily they assured her that it was a common thing for surgeries like mine to drag out an hour or two. She had a long, boring day.

Day 5 – From dull to sharp – in many ways

Day 4 and 5 post surgery has been real “improvement” days. The worst pain from the incision has given way to more itching. It feels good in the way that I can feel it healing up nicely 🙂

The first pains was kind of all-over-pains, now they’re sharper and more precise and local.

The nights are a bit restless, since I wake up several times because of the pain both from the wound itself, as well as pain from the inside of my ear and discomfort from lying in unfamiliar postitions (more pillows etc). BUT, I sleep thorougly well, and even quite long into the morning. Usually I wake up when my girlfriend gets up or her son (4 years with ants in his pants) comes into our bed (very early!). Not so these days. I guess I sleep quite heavily. That is so nice, it’s been years since 🙂 On a sidenote; usually I sleep with a mouthpiece in order to prevent sleepapnea and common snoring (gives me sore throat). That has proven too painful these post surgery-nights, since one of the muscles attached to the skull and jaw-bone has been cut in 3 places (parallell to the muscle fibres as I understood it, in order to make room for the receiver underneath the muscle). It has been no problem using it for chewing, but the muscle has been swollen and therefore shorter than it usually is, thus resulting in too hard a bite and too much strain while using the mouthpiece. I slept just fine without it, no problem there 🙂

Yesterday (and the days before) I found some strenght to do a little “chores” on my new over-the-top-bought-for-the-occasion-laptop (Norwegian link here), getting up to speed on both the Tour the France (watching live camera transmission of the last stages on the internet) things near and dear to me (Facebook etc) as well as catching up on e-mail and such. I planned before the surgery that I could be staying in bed for quite some time (up to weeks all depending!) and needed a decent tool for getting back into work while being bound to bed. (it is also very nice to watch movies on :-)  ) It was a smart decision on my part. I’m feeling I have purpose even though I’m “chained” to bed. I do as much as I can. And I can do much more with this tool than I otherwise could have… It’s kind of what makes us human; the ability to foresee and plan something  :-)  (feeling very clever now hehe)

First decent walk outside was yesterday in the evening, but a 100 meters and then sitting on a chair for an hour or so playing a boardgame was too much. I had headache (like normal headache) and throbbing pains on the side of my head when I went to bed. It took a considerable amount of time and a couple of painkillers before I drifted off to sleep… I didn’t take a walk today. Last nights experience scared me a little.

It dawns on me that I have really undergone major surgery, even though I suspect the eminent professor Claude Laurent who operated on me has used a new incision technique which is less intrusive and traumatizing method of inserting the implant (than the previous C or S-shaped incisions).

The incision is straight and goes right behind my ear. The magnetic receiver underneath my skin has been placed almost directly above my ear. I expected it to be placed further back, but after pondering the “new” location I have come to the conclusion that it is probably better than having it further back. Real-life experiences will tell in time :-) 

(the image to the right has been taken from otosurgery.org and shows an implant that is located slightly further to the back of the head than it is in me (I believe))

These days I feel as if the reciver part of the implant (the biggest piece) is pressing my skull (above my ear) to the extent of being uncomfortable. I have no doubt, however, that this sensation will disappear given time.

Right now I have a rather sharp pain inside my ear. This pain emerged on day 3/4 when the pain from the fleshwound (incision) subsided slowly. I guess it’s two-sided pain; one part from the hole inside my inner ear (the surgery and the insertion of the electrode) and the other part from internal pressure due to swollen tissue, clotted blood etc. (I was snotting blood the first two days)

Tinnitus is back to “normal volume” (which I’m kind of used to) after having rather load fits on rather frequent occasions the first days. The only thing tiring now is that I have to lsiten to the tinnitus all the time. Look forward to activation! (waiting for letter from hospital about date for that one!)

Dizzyness is unchanged, I can’t turn my head much in any direction before everything “swims”. Just changing the weigth on my two legs is enough movement of my head and the vestibule in my inner ear for things to become “fluid” for me. A nasty feeling. I guess I have a slightly better understanding of what sufferers from Ménière’s disease have to endure… It’s as if I’m severly drunk without the effects of alcohol… Kind of…

Right now, the dizzyness is the biggest issue for me, hindering me in everyday chores.

I was off the painkillers from day 2, but have taken them as needed, not much anyway.

A good analogy of HA, unilateral CI and bilateral CI for hearing people

The following words was observed on Facebook (written by my fellow CI-bloggers) this morning.

A CI blog-friend of mine, Valerie, asked for advice on Facebook:

“Our school will have visitors out next week, how do I explain my cochlear implants and deafness without them treating me differently????

Then another CI blog-friend of mine, “the mad dasher”, Sam Spritzer, offered Valerie a very good answer, and I feel compelled to share this with my readers:

“

Sam Spritzer at 1:17am December 5

If I were you, I wouldn’t even worry about them treating you differently. You can tell them that CIs are the 21st century version of HAs, only better. And if you have to use an analogy, CIs to HAs are like color tv to b&w tvs. And a bi-lateral CIer is HDTV to standard color tv. Good luck!”

This was the best analogy I have seen to date, in order to explain hearing technology to hearing people. Also he is right in saying not to worry about being treated differently. It’s easy to say, of course, but there’s truth in it. I can vouch for that… Think about something else. Avoid or avert those “worry” thoughts…

So, I just want to rewrite the analogy a little bit:

Imagine hearing aids are like Black&White TV. Then CI is like color TV.

If unilateral CI is like color TV, then bilateral CI is like HDTV.

In the Queue of my life, no 44 – (Part 5 of 7)

Secretary of State Sundsbø: – The responsibility lies on Health South-East .

Secretary of State, Dagfinn Sundsbø (SP, Centrum Party) in the Department for Health and Care says to Din Hørsel taht the department have been briefed about the situation for CI-surgeries in the region of Health South-East. – There has been concerns for the difficult situation at Rikshospitalet. We’ve been informed that illness among staff has been a large contributor to the currently difficult situation. But we strongly believe Rikshospitalet will be able to turn this around and that they are doing whatever is possible in order to maintain the set number of CI-surgeries for 2008.

He tells us that the development of the situation are closely monitored via follow-up meeting throughout the fall of 2008. – Health South-East has a clear understanding and acceptance of the demand set by the department as for how many surgeries shall be performed this year, he says.

According to the State Secretary, the Rikshospitalet are working at a project for increasing the surgery capacity by means of eliminating the needs for putting CI-patients into beds post-procedurally. – That project has a high priority and is expected to be implemented some time in October. The Otolaryngology department has drafted a plan for treating more patients. The plan is being finalized and is currently being studied by the hospital management, he says.

Sundsbø says that the reason of the unfortunate situation that has unveiled, is caused by a number of unfortunate coincidences. The Otolaryngology section had a heavy burden of illness, and also had trouble recruiting new staff for compensation. Reduced number of beds available to the section will be compensated by the establishment of the “one-day treatment” project, he says to Din Hørsel. – We’ve also been informed that another problem area is the pre-qualifying CI-examination capacity, Sundsbø tells.

108 patients are currently waiting for CI at Rikshospitalet. [my comment: at current rate the 108th patient has to wait more than 2 years]

Decoding sounds from Cochlear Implants

In this informative video you can supposedly get an idea of what kind of work my brain will have to do in order to decode those artificial electronic impulses into meaningful sounds….

I wouldn’t know, if this is accurate or even if it’s true, as I haven’t been implanted yet, but would love to get comments from my CI-blog friends on this posting!

A great what-is-Cochlear-Implant video

Here is a very good informative video from the Med El Cochlear Implant-brand based in Austria.

This video shows very good what a Cochlear Implant actually does for the hearing.
It shows how a Cochlear Implant works in terms of bringing artificial sound to the brain.

Thanks to Berose and her blog on which she made me aware of the existence of this video.

My story got published

A few weeks back the latest issue of the membership magazine “Din Hørsel” (“Your Hearing”) was sent out to all members of the Norwegian Association for HoH. In this issue is an interview with none other than yours truly 🙂

I’m proud to be a small part of the fight for better medical care for people who need CI in Norway.

So far I have received no official responses to this. I keep hoping it’ll tickle into the minds of the people in positions to do something about this difficult situation that hundreds of people like me are enduring here in Norway.

I will of course translate this article to English, but you have to be patient with me, since I will be attending a school reunion this coming weekend.

I’ll be back!  🙂

Research Supporting Bilateral Cochlear Implantation

Someone heard me! 🙂

And I got hold of what I needed! A 5 pages long list of research that supports the notion that everybody who needs it should have bilateral CI!

I got in contact with Amy Brown from the Let Them Hear Foundation Advocacy program. She provided me with a huge list called “Research Supporting Bilateral Cochlear Implantation“. It is updated and very much valid for the ongoing battle we have these days in Norway for allowing adults get their CI number two on an as needed basis.

Amy wrote me the following, which I happily honor, given the fact that she gave me the precious list in the first place 🙂
Thanks to Amy and Sheri Byrne from the Let Them Hear Foundation.

Hi Ulf,
Thank you for your question.  This is a proprietary LTHF Advocacy Program work document.  We use it specifically to support our appeals.  I am happy to share it with individuals such as yourself as needed, but it is not intended for public consumption.  We continually update and revise this list to include the latest most compelling peer reviewed medical literature.  It is meant always to be a work in transition. If you know of anyone who needs access to this information, you are welcome to share my contact information with them.  I will follow-up immediately.

Amy Henderson Brown, J.D.
Director
Let Them Hear Foundation Advocacy Program
149 Commonwealth Drive
Suite 1014
Menlo Park, CA 94025

If anyone need this information, I’d be happy to provide her e-mail address. All you have to do is ask. I won’t publish it here because that could lead to her getting more e-mail spam. Better to keep it personal.

Bilateral CI research findings

I will post my findings on the issue of bilateral CI on my blog. Hopefully it helps someone else too…

I want to collect the data concerning this debate, in order to get an oversight of what the medical community discover, as well as what they are writing and thinking about this issue.

Papers found in PubMed:

Patients fitted with one (CI) versus two (CI+CI) cochlear implants, and those fitted with one implant who retain a hearing aid in the non-implanted ear (CI+HA), were compared using the speech, spatial, and qualities of hearing scale (SSQ) (Gatehouse & Noble, 2004). The CI+CI profile yielded significantly higher ability ratings than the CI profile in the spatial hearing domain, and on most aspects of other qualities of hearing (segregation, naturalness, and listening effort). A subset of patients completed the SSQ prior to implantation, and the CI+CI profile showed consistently greater improvement than the CI profile across all domains. Patients in the CI+HA group self-rated no differently from the CI group, post-implant. Measured speech perception and localization performance showed some parallels with the self-rating outcomes. Overall, a unilateral CI provided significant benefit across most hearing functions reflected in the SSQ. Bilateral implantation offered further benefit across a substantial range of those functions.
(Link to more information about this paper)

Speech perception tests were performed preoperatively before the second implantation and at 3 months postoperatively. RESULTS: Results revealed significant improvement in the second implanted ear and in the bilateral condition, despite time between implantations or length of deafness; however, age of first-side implantation was a contributing factor to second ear outcome in the pediatric population. CONCLUSION: Sequential bilateral implantation leads to significantly better speech understanding. On average, patients improved, despite length of deafness, time between implants, or age at implantation.
(Link to more information about this paper)

The average group results in this study showed significantly greater benefit on words and sentences in quiet and localization for listeners using two cochlear implants over those using only one cochlear implant. One explanation of this result might be that the same information from both sides are combined, which results in a better representation of the stimulus. A second explanation might be that CICI allow for the transfer of different neural information from two damaged peripheral auditory systems leading to different patterns of information summating centrally resulting in enhanced speech perception. A future study using similar methodology to the current one will have to be conducted to determine if listeners with two cochlear implants are able to perform better than listeners with one cochlear implant in noise.
(Link to more information about this paper)

The Let Them Hear Foundation have done their own research:

Despite many insurers’ (in the US; my comment) continued erroneous assertions to the contrary, bilateral cochlear implantation is NOT an experimental or investigational procedure, and is medically necessary.  Bilateral cochlear implantation in children has been an accepted, mainstream medical practice since 1998.  Over 3000 have been performed, including over 1600 on children.

Several studies have shown that there is a vast improvement in sound localization ability in patients with bilateral cochlear implants.  In particular, the group of subjects who received a significant amount of improvement when bilaterally implanted were those who were initially implanted at a very early age, as Andrew was.  In September 2005, an international consortium of cochlear implant specialists published an article in the widely respected journal “Acta Oto-Laryngologica” formally recommending that all children with permanent bilateral profound hearing losses receive bilateral cochlear implants.  A recent publication by industry-leading otologist Dr. Robert Peters stated that:

Provision of binaural hearing should be considered the standard of care for hearing-impaired patients whenever it can be provided without significant risks. In severe to profoundly hearing impaired individuals, this can only be provided with bilateral cochlear implantation when hearing aids are inadequate. In carefully selected candidates, the benefits derived are significant, the surgical procedures well tolerated, and negative effects infrequent in both children and adults.

A second recent paper by well-known communications disorder specialist Dr. Ruth Litovsky concluded that: Bilateral CIs can offer a combination of benefits that include better ear effects, binaural summation/redundancy effects and binaural unmasking. These effects have been illustrated in numerous patients world-wide; continued work in this field will no doubt lead to further improvements and increases in the size of each of these effects, for adults and for children.Please refer to the following publications for additional information.

Another medical benefit of bilateral cochlear implantation is that it has been shown to improve speech recognition in noisy environments.  It is expected that once that a patient’s hearing with the second cochlear implant in place is maximized, they will notice a significant improvement in understanding speech in noisy environments.  Comprehending speech amidst background noise occurs commonly in real-life situations, especially in classroom settings and learning environments, at the dinner table, or while talking in a car or on a plane.  Please refer to the following studies for more details:
read more from their conclusions here…..

R.I.P Sten Harris

Sten Harris died yesterday, after a long time of illness. Sten worked at Rikshospitalet for many years, operating most of the CI-operations up until now. He was a true CI-pioneer in Norway.

His illness and following death is probably one of the reasons that Rikshospitalet has problems with the capacity of performing CI-operations these days. Add that to the budgetary cuts made recently, and it is not difficult to understand that it will be hard to find a replacement.

Sten Harris last act as the leading medical surgeon at the Otolaryngology-departement at Rikshospitalet was to object to the severe budget cut by resigning from his position in protest.

He also appears in the news-video where I also appeared (video is posted permanently on the top left side of this blog).

He has also through the years been an advocate for bilateral-CI and other operations that helped many people to a better life. He participated in debates to the last (art.), and was involved in crucial research over the years, thus driving the development and understanding of CI and related subjects forward: “Researchers Ona Boe Wie and Sten Harris from the University of Oslo presented findings on the effect of bilateral cochlear implantation on spoken language skills in children from five months to 18 months old.”.

I did not get to meet him, but from what I’m told, he was a fantastic person. And I googled him and found numerous examples of his dedication to the cause of hearing/deafness.

Sten Harris, you will be remembered by many, many people. This is my post-mortem salute to you.

May you Rest In Peace