Useful comparison chart

The brand-independent and informational website, Cochlear Implant Online recently posted a comparison chart of the three CI-manufacturers products.

Skjermbilde

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

Sound 5 month post-activation + testing binaurality

I know I aired some frustration in my last post two days ago about not being able to track any progress (sound wise). This lack of detecting progress is partly my own fault, I haven’t been up to speed about my listening-training. To my defense I have to say I’ve been swamped in everyday life and taking huge life-changing decisions 🙂

music Well, today is Sunday, and first I sat down with an episode of Fringe, with my new headphones (product link). Today I think the deep raspy voice of “elderly Walter” came through better. And upon this small revelation, I concentrated more on what I really hear, rather than working on understanding the speech. I think small subtle sounds are breaking through easier than before. I’m getting more usable information! I guess this means my brain is becoming better at sorting out the information feed it’s getting.

Then I put on Spotify, while still wearing my headphones, and started playing a re-mastered version of Nina Simone’s “Live at the Town Hall”. Instantly I found her voice accompanied by the piano a pleasant experience :-)  This was a nice CI-moment: Instant enjoyment in music I essentially haven’t heard before (-:

The piano sounds better when played with an accord. The vibrant co-existence of the various tones is also getting closer to becoming like I remember it with my old hearing. Our brain obviously has an ability to combine several tones, thus making the multi-toned sound a unique sound, being bigger than the sum of its parts, so to speak) In short the sound seems to become more natural!

I think not training every day also has its mission: Today I could detect some real progress, and I really needed that experience 🙂

nina simone While Nina Simone plays, I decided I will try on my hearing aid for the first time since re-adjusting them to deliver 20 dB less sound than they used to. I think my left ear is craving for stimulus, and the tinnitus in that ear is really really bothersome.

So, before I put in my hearing aid, I want to remember how it’s like without. I have only faint notions of some bass-sounds. With music, if I crank up the volume a bit, I think the software in my processor automatically reduces the sound energy being delivered to my cochlea-based damaged hair cells. Thus, I can enhance the experience of the deepest bass in my left naked ear.

Most importantly: it’s mono.

Binaural again (stereo)

I tried going binaural a couple of times before, shortly after CI-activation, but the hearing aid was unrealistically, out-of-this-world loud! Hearing aid has now been adjusted to my new reality. I can still understand words being spoken with only my hearing aid, but all other ambient sounds are missing. Nothing. And voices are thick, muddy and muffled. It resembles to mumbling.

Well, show must go on, and I put on the music… Binaural for the first time. I write down the impressions as I listen…

Read the rest of this entry »

Oh, what to write? Or not to write?

Did I get it or not? Wait! Don’t cheat by reading down just yet! Follow letter by letter!

I smirk, a little curve on my lips, a little smile, a little bigger smile, a smile, a bigger smile, even bigger smile, huge smile, A BIG GRIN!  😀

I GOT CI!!!! YES!!!!

I have to tell you, it was such a relief to get that message from the doctor, and the way he did it is a story in itself 🙂

surgeon We sat down around a table, after the initial handshakes, and even before I got the chance to sit down properly, he just said, “we will offer you CI”. NICE :-D  No tact, and no time to get really nervous or to start wonder what the answer would be…  Well, needless to say, that was a major moment for me! 🙂 It took two seconds for me to look into his face to look for any sign of a joke or a countersignal, but he was sincere and dead serious. Then the understanding reached my cortex… It was like detonating an emotional nuclear device 🙂

gratitude My girlfriend sat next to me, and I had to hide in her lap a few moments while I gathered myself to continue the conversation. It was such a relief. Almost 4 years of waiting was finally over in that moment.

As we took up the conversation again, they quickly discovered that I knew everything they were going to say. But, we have to follow protocol, and they needed to say all the necessary things…

I was told all the standard warnings about the procedure being close to the facial and taste-nerves, that not everything might go as planned and that I should be ready for a less than good result etc etc.

476S_AdvancedBionicsHiResAuria Then they wanted to talk about choosing the device, either MED EL, Freedom or AB. I quickly told them that I made my choice long time ago, and they were thrilled and we all had a good laugh. We went through the various features anyway, just to make sure I had all the facts. I have a feeling they don’t usually get patients that know as much as I do about this subject… But, informed as I already am, I had absolutely no doubts in my mind. I’m going for Advanced Bionics, and I also chose the color, Dark Sienna. It’s the device I waited another extra year for. I could have been here with a Freedom or MED EL today, but I have from quite early in my process known that Advanced Bionics was the CI I want. Abby pretty much sums it up for us all here.

Surgery date has not been hammered yet, but it should be around the 22-24th of July. Not idealistic concerning our holiday, but, hey, I’ve been waiting for this for so long, and I’m not waiting a day more unless I have to! Also, my girlfriend wants to be with me during the whole ordeal, and what better time than during our holiday for this? 🙂

I’m a very, very, very lucky man!

2008-06-30-homeless My thoughts now goes to those who are not so fortunate. I want all of you who read this to join me in a moment of contemplation: Think of all those individuals that live on our planet under less privileged conditions and has no idea that CI even exists! And think of all those who knows about this, but has no government to provide the proper healthcare or who cannot afford a proper health insurance coverage… It’s such a shame the world is so unfair!

I know all too well how it is for you, what you struggle with and I wish something could be could done about this for everyone…

I hereby pledge that I will honor those less fortunate by being the best person and human being I can be, and to advocate for CI for children and late deafened adults.

Pinch me! Slap me! Am i Dreaming?

I just got the long awaited letter from the CI-team at Rikshospitalet! YES! 🙂

Finally!

(read on below ;-)  )

happy

The long wait is over, and I can now start to look forward to the beginning of the process of becoming a candidate for CI! (sounds like I’m running for the presidency, and in many ways it feels that way too! THIS IS BIG!)

Phase one of the pre-screening, pre-qualification process starts april 28. THIS YEAR! 😛

Then followed by phase 2, which in turn should end up in me being qualified for the procedure AND A NEW CHANCE TO HEAR AGAIN!

I have to tell you, I started crying when I realized what the letter said… It was a good cry!!!  I’m so happy it just happened to be a day when my girlfriend was with me. It was a day to remember, indeed! Thank you, my dear, for being with me and sharing that mammoth moment with me!!!

I love you, my love!

all_you_need_is_love_by 

I needed to share this with the world today!

I want to thank everybody who is reading my blog for all the support, comments, insights and INSPIRATION you provide me! Abby, Jennifer, Jeff, Sam, Roberta, Arnt, and many, many others, you know who you are!

And to everybody close to me in my everyday life, thank you for being patient with me and supporting me throug this!

Since 2006 I’ve known this day would come, but I still can’t quite comprehend it. I’m in a mild state of shock, I guess 🙂

HAVE A GREAT DAY EVERYBODY!

Patience, understanding and love

When I started this blog in late 2006, I had a feeling it would be a long journey (that’s why I started the blog in the first place). That suspicion became stronger after receiving a letter from the hospital saying that they had an obligation to operate on me before 2010. What I had ahead of me back then, has been more or less as expected. I was prepared for a long haul.

“To exist is to change, to change is to mature, to mature is to go on creating oneself endlessly”. ~Henri Bergson

I want changeMy every day life has changed a lot. More activity, never a dull moment. I wish the day had more hours :-)  I’m not “waiting” for the CI anymore, I let that struggle go this winter, focusing more on my own life and people around me. (Mind you, I still need the CI desperately!) I’ve had enough of trying to understand why Rikshospitalet are not able to operate more than 50% of what the Health ministered ordered last year (see some of my previous posts). I don’t think my engagement into this issue has any meaning or bearing anymore. I’m sad to say this. (I hope I had a little impact, but I have achieved no real results, to my knowledge anyway.)

Waiting, waiting and more waiting. In fact, it has been so much waiting, that life happened during the waiting 🙂

And life is what everything is about, isn’t it?

In retrospect I can with great certainty conclude that I did all the right things back in 2006 and 2007. (You have to read the past posts on this blog in order to know what has happened to me and what I have done  :-)  )

I have managed to get my life back. I am in a place that is brighter and better, even though it has it’s challenges. I am where I want and need to be.

I am able to cope with life, and take care of my loved ones and myself (somewhat).

But I’m walking a fine line. Experiences from every day life tells me that I have very little to go on. Only thanks to the slow process of acknowledging that I’m by definition deaf, I have come to understand better what the process of loosing one’s hearing does both mentally, physically and socially. And take some precautions in order to preserve myself from exhaustion.

I am deaf, I use hearing aids to take advantage of the very little hearing residue I have left and thus suffer from a rather severe case of “recruitment”. I have tinnitus on both ears, get tired really quickly in general (and then the tinnitus really howls!) and have no chance of keeping a regular job. I need all my strength to take care of my son, my dearest girlfriend and her son, and last but not least, myself.The Fight Of My Life IMG_1252

I had to fight to get my life back. I had to fight with my willpower in order to do all the right things in many areas of my life. I changed a lot in my life. I changed myself in many ways. I changed how my family perceived me. I had to get them to understand me better. And it helped.

In a way I had to try NOT to fight, too! By accepting my fate and my condition (it is by no means a surrender, mind you! :-)  ) I have learned that my mind and willpower can work against me as well. Rather than standing tall in the strong wind, risking to break something or get hit by flying debris, it is better to bend over and lie down on the ground and survive. Sometimes it is much better to accept fate and accept conditions, rather than opposing the facts and use a lot of energy trying to get things my way. The consciousness of this “bend before you break” is helping me in many areas of my life.

This blog will remain active at least until I have received my first CI by the end of this year, but it will be less active due to lack of time and energy to keep it updated.

I have learned to suck things up. Take a punch. Even though life is hard when it comes to my health right now, I have so much to be grateful for. I will not allow myself to turn sour or negative. What happens happens. I’ll do my best and want to keep a positive mind about everything. All is good until proven otherwise 😉

I’m going to use this experience to improve my own life in the future. No matter what. There is another day tomorrow!

“If we don’t change, we don’t grow. If we don’t grow, we are not really living.” ~Gail Sheehy

In the Queue of my life, no 44 – (Part 4 of 7)

Rikshospitalets goals for CI operations in 2008 will not be met.

As of September 1st, Rikshospitalet has performed 25 CI operations on adults. – We will not be able to achieve the goal of 100 operations for 2008, Rikshospitalet says in a statement.

The former health-minister Sylvia Brustad (labour party), ordered Health-South-East (Helse Sør-Øst) to perform 100 CI operations on adults. Despite the warned budget cuts at the Otolaryngology-section at Rikshospitalet last winter, the State Secretary Rigmor Aasrud from the Health and Care Department (HOD) stated in February 2008 that the order for 100 operations remained valid.

For all the adult patients in line for CI examination to decide medical eligibility, waiting to get back to working life, this is a very meager comfort when the summer turns into autumn. Leader for section for hearing, chief medical officer, Marie Bunne, says to Din Hørsel that they only managed 25 operations on adults so far this year. She does not deny that the hospital is in a very difficult situation on the background that the order was for 100 operations. – We do our best, but we will not be able to meet this order, she states.

Can not reach last year’s capacity

Last year the Otolaryngology-section carried out 50 new operations on adults. – Given the present situation, we have great challenges exceeding that number, she informs. Her analysis of the situation is that the hospital has been given an order without the needed resources. In order to fulfill the order, the section need an increase in the resources of 33 percent. – We have the countrywide responsibility for operating CI into children. They are given the highest priority, and we are able to operate all the children, Bunne says. The Rikshospitalet has a capacity of 150 operations per year. Included in this figure is also re-surgeries and some number-two implants. Bunne informs that the hospital faces huge challenges in respect of reaching this capacity after the budget cuts earlier. The Otolaryngology-section had no reduction in number of positions, but the capacity for CI-surgeries are directly related to the fact that the hospital are saving the number of beds and operating rooms available, she informs us. This fact disables us from reaching our normal capacity, the chief medical officer states.

Medical priorities

The Otolaryngology-section also receives other patients that are prioritized before adult CI-surgeries. – Cancer patients and people with chronic destructive ear infections. The chief medical officer makes a point of the follow up post surgery. In many ways the patients become life-time clients with needs of controls and support when problems arise. The Otolaryngology-section faces an accumulated amount of patients that has received CI and need regular follow-up. – If nothing is done with increasing the budget frames in accordance to this increase in demand, our ability to help new CI-patients will most certainly decrease.

The section leader is not happy about the situation Rikshospitalet faces on the subject of new CI surgeries for adults. – We are forced to make painful medical priorities given the extremely tight budgetary situation, she says. She continuously reports status at the section and what resources the section is in possession of. – The hospital management are aware of the contradictions between resources and the formerly requested results, she states.

Staff willing to sacrifice leisure time for shorter CI-queues

The section leader has a few short-term strategies that might improve the situation a little. – By the end of the year we will perform some CI-surgeries as “day-surgeries”, meaning that the patients won’t spend a night at the hospital after the surgery. The knowledge around CI surgeries are now so solid that the medical staff thinks it is about time to run a trial for this “CI day-surgery”. But this will in best case scenario mean that the hospital will be back to “normal” operating capacity (my comment: i.e. 50 surgeries, still only 50% of capacity as ordered by health minister). It is not the lack of will on our part, she continues. The section has very dedicated staff. – We could have been able to reduce the waiting time a little by performing CI surgeries as “projects”, Bunne informs us. In clear text it means that the staff are willing to use their leisure time to perform surgeries. – Such a solution demand that further funding are released, she says. The chief medical officer has herself taken initiative for investigating the possibility if resources from the “faster back to work”-fund can be release to such a project…

In the Queue of my life, no 44 – (Part 3 of 7)

…article continues…

 

Invest in my health

The health bureaucracy system has grown into a monster that seemingly no one is able to really control. The health care costs money, we all know that. But now I have cost the society more money in welfare benefits than a surgery on both ears costs, and I still have to wait another year. I lack words in an attempt to describe how pointless and Kafkaesque I think this whole situation is, he says resigned,

He observed the budget cuts at Rikshospitalet last spring with disbelief. Cutbacks on bed-days and OR time has direct effect on the capacity for CI-operations.
– My point in this mess is about the dividend between what we as a nation invest in health and what is being used for welfare benefits. In my case the state bleeds money totally unnecessary. To illustrate the pointlessness of it: this money could have been spent on further increase in CI-surgical capacity, improving after-surgery-support capacity or more cancer treatments at the hospital! It is a vicious circle: the more you save on health, the more money leaks into the welfare and the less BNP we are able to produce. My opinion about this is that it is an example of irresponsible management of the taxpayers money, Ulf says.

Ulf challenges the authorities to think of everybody who waits in health-queues as valuable customers to the hospitals and for the society.
– If our hospitals don’t have capacity to operate, it is about time we allow immediate treatment in other countries. The capacity is there. Economically we save money, no matter what.