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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 Smilefjes
If you want to know more about Cochlear-implants, click linked image below to read more…

pic-cochlear

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.positive-attitude

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

negative-space-9I’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.

glassy_soundSound 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 Trist fjes ) 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 Trist fjes 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.

grumpyI’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 Smilefjes ) 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.

Ulf_091010_0204_biggerNow I get to be a father of a wonderful baby girl (not forgetting our two boys eitherSmilefjes), I have a great deal to look forward to, and I have the special one to share it with Smilefjes and her family as a new branch of my social network as well Smilefjes

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.

Marie_Bunne_278x261This 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 Trist fjes) 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 Smilefjes

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 Prayer-no-expectationlinked, 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.

Read the rest of this entry »

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!

small-yard-water-fountain 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.

bird_twitter_full 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  😦

Speakers-738120 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 🙂

motley_crue_logoIn 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