With the use of magnets, in so called “repetitive transcranial magnetic stimulation” (rTMS), a trial run has showed promising results in the treatment of tinnitus.
Read more about it here:
With the use of magnets, in so called “repetitive transcranial magnetic stimulation” (rTMS), a trial run has showed promising results in the treatment of tinnitus.
Read more about it here:
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]
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.
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.
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.
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.
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…
You people must become fed up with all these “Status update”-posts, no?
After this rather long and 5-way split Status update, I realized there are some other health issues that needed addressing.
It also serves as a reminder to myself that the purpose of this blog is mainly to be like a medical journal (for myself and others who might need the info).
It is still sounding the same as it did when I started being bothered by it, with a rather constant “UUYYUUUUYYYUUUUYYYUUUUUYYYUUUYYYUU….” around 1 to 1,5 KHz. It’s worst on the right ear, and it varies in intensity (or strength/volume) according to how tired I am. I don’t know if that means that the tinnitus is worse because it’s actually louder or if it’s because my tiredness makes my brain more susceptible. It is a matter of perception I think…
General health, back to regular training
I have started training again, after a whole year without any training regime whatsoever. The body seems to respond well to the exercise as opposed to one year ago when any exercise gave me pain and aches in both bones and muscles. My goal is that my little overweight shall become less during this winter instead of becoming more as it usually does during the dark season.
The chronic pain in my knees is fading. This is a little miracle for me, because it was troublesome to just take the stairs at times. I thought the chronic pains was a one-way ticket into some sketchy knee-surgery-history. I’m glad I was wrong 🙂
I have become conscious about the fact that I can not and should not run anymore in order to save the knees from more wear. So my focus has been switched to alternatives like kayaking, biking and swimming. And that is all right by me.
I have a theory that the level of stress in me the latter years made my immune system turn on my own body as a warning mechanism (the signal being: slow down!). I don’t know if this makes any sense, but what if the immune system reacted so strong to the state I was in that it actually attacked parts of me it was not supposed to attack? I know, it’s a wild theory, so if anyone has any views on this I would appreciate any comment. I googled on the term “autoimmunity”, but those articles where mainly oriented toward causes for arthritis and diabetes. I didn’t go deep though…
I’m more stressed and restless. The feeling of social isolation is stronger than ever, and I’m more sad. It’s not depression, because I am able to initiate things and engage in activities that are good to me. The positive experiences about my body’s reactions to physical exercises this summer came at a good time, because up here in the north, the autumn is generally a rough time because it’s get much darker so quick, and thus it’s important to be in a good physical condition in order to avoid Seasonal Affective Disorder (S.A.D) which I had to some extent during my early adult life.
Training in the swimming pool will give me a positive reaction this autumn and winter, I’m sure. Hopefully the stress will be reduced and I’ll be able to relax properly again.
Lost love is one part of the rough spot that I’m living right now. The other part is that earlier this summer, I had great anticipations about getting really close to my turn at the operating table for the CI. Not so. As things have turned out, the budget cuts at Rikshospitalet that I wrote about here earlier has slowed down everything. Instead of operating according the what the Norwegian Health minister ordered (at least two operations a week), the speed slowed down to one operation a week. So current status to my operation is that I can expect something to happen next year around summertime… One whole year more than I thought my worst case scenario would be when I started this blog… It takes some time to wrap my head around this. And it takes a whole lot of effort to not go negative about this, too. I do my best.
“Wait in the power of knowing what is possible…. Do not waver…. Remain steady… Remain true to your goals and allow life to carry you. That which is worthwhile is sometimes created slowly.”
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.
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.
Let Them Hear Foundation Advocacy Program
149 Commonwealth Drive
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.
This is a translated, abridged and reworked version of a Norwegian article found on HLF’s website.
In response to MP Berit Brørby (Labour Party) the Minister of Health guarantees that the operations and screening will be carried out according to the assignments the government has given Rikshospitalet. The fate of the Otolaryngology-department at Rikshospitalet has been uncertain for some time now, and the hospital was ready to implement huge and devastating cuts to the said department in February this year. Now, however, the Norwegian Department for Health and Care and Health South-East (Rikshospitalets superior administrative body) agrees in their demands to the Rikshospitalet.
“I can ensure the representative Berit Brørby that the demands set in the assigments for Rikshopitalet stands from my side. There are also no changes in the function Rikshopitalet has in this area nationwide in regards to operating and following up on children. Health South-East has now also reassured the government that the given assignments will be prioritized independent from the demands for meeting the budget for 2008.”
“The Health department has also repeated a precision to Health South-East that the goal for 100 CI-operations for adults is per definition for new patients”, writes the Minister of Health in her response to representative Brørby.
The Minister has since the summer of 2006 said that the total number of nationwide CI-operations on new adult patients shall be escalated up to the medically and statistically founded annual estimate of 200.
The waiting time for CI-operations for adults is now between three to four years.
The Minister also wrote about the all-important screening process of infants in order to start early with children with suspected hearing damage. (not directly related to the CI-issue, but nevertheless good news for the development of creating a good medical service to all things related to hearing).
In short this means that despite the hard times for Rikshospitalet budget-wise, the CI-operations are now guaranteed. The hospital will have to find other ways to save money than to bleed the Otolaryngology-department to near-death… Good news indeed 🙂
I just sat very comfortably in my favorite chair in front of my computer for two hours, doing some work that requires concentration. I had no sounds to distract me, since I turned my hearing aids off for the work-session.
I can’t stand the sound of the fans, even though I have water-cooled most of my rig, the hard-drives give off too much heat for the whole thing to be able to run without fans… I think the sound can’t be much more than 17 – 20 dB (according to fan specifications), and that’s a faint sound, really. But my hearing aids are the most powerful there is (to my knowledge) and they’re cranked to the max. (Widex Senso Diva). So I turn them off more and more these days…
The recruitment is killing me if I don’t turn them off.
The tinnitus is there as always, but not really bothering me concentration-vise. It’s sort of comforting, since the sound now has a rather steady tone. (before it was a chaos of frequencies and variations in strength/volume)
Anyway, I sit, my head is not moving, my eyes are only fixated on the screen, and my concentration goes to the task at hand. The first hour goes fine, no problems.
The second hour I start to get physical sensations in my head. It is like pressure building slowly up.
I had a good night and I’m not tired. I have no stress to complete the work I do, and have no deadlines for anything. It’s Sunday 🙂
Then suddenly I get these auditory sensations, it’s like a silent storm. I can feel it somehow. Not like pain, it is not unpleasant, it’s just a sensation of very weak electric current in my brain. Like a blanket of electricity sliding back and forth like the radar screen image. It’s like a soft “wooosh” inside my brain…
The sensation that I have are connected to my ears, and at the same time they affect all of my brain (at least it feels like it does). I have no control of this sensation.
I wrote about this sensation before, connected to a pre-sleep phenomenon. This is very much the same, only now I get it during daytime too…
Seconds after this “wooosh”-sensation I feel dizzy (I guess there’s some kind of activity affecting my Vestibule where the balance-nerves are situated). It’s a weak vertigo, even though I sit still, are at peace with no stress. And I know I don’t have Meniére, thank goodness…
After this my ability to concentrate is worse. It’s difficult to keep a thought for as long as I like. My mind has always been a multitasking one; while doing one thing, my mind has been working out what the next thing I should/want to do… This is impossible in the state I’m in after only two hours of working effortlessly… It’s frustrating for me, because if I’m doing something that gives me a thought that I want to pursue, the short-term memory isn’t working as I’m used to. So when I complete the task I worked on, I KNOW that there was something I thought of doing, like searching for a special kind of information, or look up a certain fact etc. etc. But it’s gone… Sometimes I sit for 10 minutes of more, pondering what it was that ignited that thought, trying to reconstruct the idea for myself… Sometimes I get it, most often I just move on… I can’t let it get to me.
In short it makes me feel like I’m cognitively amputated… The SUDOKU-thing helped me understand this better…
And by writing this now, and concentrating on the subject and all the aspects of writing, I feel I’m pushing myself… I’m starting to get a headache now… This is the part I do not understand at all…
I haven’t heard a sound all morning (it’s now 12.30, I started working at 9.30). I know my hearing is disappearing, and the tinnitus is singing it’s tune. But why is it a strain for me to do something that doesn’t affect my hearing? Why do I get this dizzy feel, why the headache, why the memory-problems, why the multitasking problem, why the feeling of fatigue? Can it be that the optical-nerve also lies close the the nerves of the auditory nerve and the balance-nerve? It is all connected somehow…
My jaws feel like they had a punch (they’re sore, like I chewed gum for a few hours). My temples hurt a little bit. The dizzy feeling is there (but I’m not having trouble with the balance, though).
This state/condition will last all day, until late at night, then I feel better again, but the paradox then is that I need to sleep. I might me tired, but want to stay up because the world feel somewhat more vivid to me. Is it connected to me originally being a B-person? I’m not extreme, have no troubles getting up in the morning whenever… (but used to)
I came across an interesting website for an organization called VEDA (VEstibular Disorder Association). I found this list of possible symptoms that is very interesting.
Image copied from “vestibular system.” Online Art. Encyclopædia Britannica Online. 23 Jan. 2008
Here is an explanation of the Vestibular system.
I did not initially place all these symptoms into the same category (i.e. having to do with my hearing), but maybe I should have??? I exctracted the whole list and will excempt (a strikethrough line) those not experienced by me. If commented, the comment has been marked like this.
This list was a revelation to me… It all fits, kind of… Seems it connects to the wiring of the vestibulo-cochlear nerve: the nerve that carries information from the inner ear to the brain. Also called the eighth cranial nerve, auditory nerve, or acoustic nerve. If the “recruitment”-theory in my previous article holds water, the information about these symptoms could also have some bearing on the subject of my condition.
During my research into my own declining hearing- and health condition, I came across information about a phenomenon regarding hair cells in cochlea called “recruitment”. I strongly suspect “recruitment” is what happens to me. It certainly would explain a lot of the things that happen(ed) to me and my hearing and the fatigue…
(Most of the text that follows is copied from this page at hearinglosshelp.com and edited by myself for the sake of this blog and my readers.)
What is “Recruitment”?
Very simply, “recruitment” is when we perceive sounds as getting too loud too fast. How is it possible to hear too loud when the hearing in fact is vanishing, you may ask… Well, be patient with me and read on…
“Recruitment” is always a by-product of a sensorineural hearing loss. If you do not have a sensorineural hearing loss, you cannot have “recruitment”. In simple layterm this means that this condition only affects those who have a significant loss of hearing caused by haircell-damage in cochlea (mainly).
As a sidenote; there are two other phenomena that often get confused with “recruitment”. These are hyperacusis (super-sensitivity to normal sounds) and phonophobia (fear of normal sounds resulting in super-sensitivity to them). Both hyperacusis and phonophobia can occur whether you have normal hearing or are hard of hearing.
An analogy for understanding how “Recruitment” got its name
Perhaps the easiest way to understand “recruitment” is to make an analogy between the keys on a piano and the hair cells in a cochlea.
The piano keyboard contains a number of white keys while our inner ears contain thousands of “hair cells.” Think of each hair cell as being analogous to a white key on the piano.
The piano keyboard is divided into several octaves. Each octave contains 8 white keys. Similarly, the hair cells in our inner ears are thought to be divided into a number of “critical bands” with each critical band having a given number of hair cells. Each critical band is thus analogous to an octave on the piano.
Just as every key on the piano belongs to one octave or another, so also, each hair cell belongs to a critical band.
The requirements for “Recruitment”
When you play a chord on the piano—you press two or more keys together but they send one sound signal to your brain. Similarly, when any hair cell in a given critical band is stimulated, that entire critical band sends a signal to our brains which we “hear” as one unit of sound at the frequency that critical band is sensitive to. This is the situation when a person has normal hearing.
However, when we have a sensorineural hearing loss, some of the hair cells die or cease to function. When this happens, each “critical band” no longer has a full complement of hair cells. This would be analogous to a piano with some of the white keys yanked out. The result would be that some octaves wouldn’t have 8 keys any more.
Our brains don’t like this condition at all. They require each critical band to have a full complement of hair cells. Therefore, just as any government agency, when it runs short of personnel, puts on a recruitment drive, so too, our brains do the same thing. But since all the hair cells are already in service, there are no spares to recruit.
Getting to the point – what “Recruitment” means
What our brains do is rather ingenious. They simply recruit some hair cells from adjacent critical bands. (Here is that word: recruit or recruitment.) These hair cells now have to do double duty or worse. They are still members of their original critical band and now are also members of one or more additional critical bands.
With only a relatively few hair cells dead, then adjacent hair cells may just do double duty. However, if many hair cells die any given hair cell may be recruited into several different critical bands, in order to have a full complement of hair cells in each critical band.
The results of the phenomenon known as “Recruitment” – the conclusion
The results of this “recruitment” gives us two basic problems. (notice the underlined parts!)
Remember that when any hair cell in a critical band is stimulated, the whole critical band sends a signal to our brains. So the original critical band sends one unit of sound to our brain, and at the same time, since the same hair cell is now “recruited” to an adjacent critical band, it stimulates that critical band also. Thus, another unit of sound is sent to our brains. Hence, we perceive the sound as twice as loud as normal.
If our hearing loss is severe, a given hair cell may be “recruited” into several critical bands at the same time. Thus our ears could be sending, for example, eight units of sound to our brains and we now perceive that sound as eight times louder than normal. You can readily see how sounds can get painfully loud very fast! This is when we complain of our “recruitment”.
In fact, if you have severe “recruitment”, when a sound becomes loud enough for you to hear, it is already too loud for you to stand.
The result is that we now often cannot distinguish similar sounding words from each other. They all sound about the same to us. We are not sure if the person said the word “run” or was it “dumb,” or “thumb,” or “done,” or “sun,” or? In other words, we have problems with discrimination as well as with volume. If our “recruitment” is bad, our discrimination scores likely will go way down.
When this happens, basically all we hear is either silence, often mixed with tinnitus or loud noise with little intelligence in it. Speech, when it is loud enough for us to even hear it, becomes just so much meaningless noise.This is why many people with severe recruitment cannot successfully wear hearing aids. Their hearing aids make all sounds too loud—so that they hurt. Also, hearing aids cannot correct the results of our poor discrimination. We still “hear” meaningless gibberish.
However, people with lesser recruitment problems will find much help from properly adjusted hearing aids. Most modern hearing aids have some sort of “compression” circuits in them. When the compression is adjusted properly for our ears, these hearing aids can do a remarkable job of compensating for our recruitment problems.
As 2007 soon is history, I feel it is appropriate for me to sum it all up for myself.
Even though my hearing is coming to an end, there are, however, sounds to look forward to. And that is the CI-sound! Still have to wait for it, but in the meantime, I can take care of myself and prepare myself as best as I can.
The year 2007 gave me many good things:
The year 2007 gave me a few downturns too:
All in all, 2007 was a good year for me. Happy New Year, everyone!!!
March 13, 2007 – Scientists at University College London and Imperial College London have shown how the brain makes sense of speech in a noisy environment, such as a pub or in a crowd. The research suggests that various regions of the brain work together to make sense of what it hears, but that when the speech is completely incomprehensible, the brain appears to give up trying.
The study was intended to simulate the everyday experience of people who rely on cochlear implants, a surgically-implanted electronic device that can help provide a sense of sound to a person who is profoundly deaf or who has severe hearing problems.
Using MRI scans of the brain, the researchers identified the importance of one particular region, the angular gyrus, in decoding distorted sentences. The findings are published in the Journal of Neuroscience.
In an ordinary setting, where background noise is minimal and a person’s speech is clear, it is mainly the left and right temporal lobes that are involved in interpreting speech. However, the researchers have found that when hearing is impaired by background noise, other regions of the brain are engaged, such as the angular gyrus, the area of the brain also responsible for verbal working memory – but only when the sentence is predictable.
“In a noisy environment, when we hear speech that appears to be predictable, it seems that more regions of the brain are engaged,” explains Dr Jonas Obleser, who did the research whilst based at the Institute of Cognitive Neuroscience (ICN), UCL. “We believe this is because the brain stores the sentence in short-term memory. Here it juggles the different interpretations of what it has heard until the result fits in with the context of the conversation.”
The researchers hope that by understanding how the brain interprets distorted speech, they will be able to improve the experience of people with cochlear implants, which can distort speech and have a high level of background noise.
“The idea behind the study was to simulate the experience of having a cochlear implant, where speech can sound like a very distorted, harsh whisper,” says Professor Sophie Scott, a Wellcome Trust Senior Research Fellow at the ICN. “Further down the line, we hope to study variation in the hearing of people with implants – why is it that some people do better at understanding speech than others. We hope that this will help inform speech and hearing therapy in the future.”
Also I found that a medical journal published 6 times a year by Lippincott Williams & Wilkins, called “Ear and Hearing”. They have plenty of very interesting online articles available to subscribers, abridged if youre a guest…
Same publishing house offers The Laryngoscope.
All this is a bit expensive for me at the moment, but I will keep searching….
If any of my readers have tips for websites or publications concerning CI, please let me know, I will collect and publish everything I come across…
For the time being I will focus on what interests me spesifically;
Still suffering from that common cold I reported on a few days back, I feel it takes forever to recover. I’m an impatient guy who hates to be slowed down. But I guess the years have given me at least a little more of that precious patience. When I grew up i was prone to get ear-infections and had more than my fair share of common cold and alike.
This time it has been a while since last round so I notice things more vividly. I am even more baffled by the impact the clogged sinuses and all other symptoms have on my hearing. Talking in a controlled environment is harder, thus giving me even more strain by communicating. Being in noisy environment communicating is virtually impossible.
I have become quite obsessed these last years about dressing myself properly to avoid getting cooled down and thus more vulnerable to catch a cold os something similar. I make sure to stay warm on feet, head and neck as good as I can. I can sense when I get bugs in my body, and mostly I feel I’m able to beat it down before I get sick. It takes a few hours sleep and a lot of heated beverage like milk with honey in it 🙂
Sometimes I wonder if I’m developing paranoia for illness, or if I’m a hypochondric…
Speaking of hypochondria, I remember when I was young I was often accused of being hypochondric, because I complained a lot. In retrospect I can understand that, and at the same time, I understand my own behaviour. What I didn’t understand was how I was affected when I had a cold. And being young and utterly impatient the feeling of increased isolation and deafness wasn’t easy to deal with.
Over the years I have slowly come to terms with all the issues concerning my state of hearing, and I have also developed this “smartness” in avoiding getting sick. I’m quicker to sense when the air is getting colder on the evening in the late summertime/beginning of fall. I know my own body better and treat it with more respect than ever before.
I do exercises on a daily basis to prevent back and neck-pains. I have gone a few rounds with my physician, and have been able to determine that my right knee has a injury to it that needs closer attention. I guess I’m simply more bodily aware than ever before, and that is a good thing, because I need to optimize (compensate) for the secondary impacts of my near deafness on my body.
For example, my back pains originate in the fact that I use my neck to protrude my head when I have trouble hearing (you know; putting my ear out to signal that I do not hear properrly). Over the years that have resulted in a neck that does not harmonize, thus straining my back further down, causing secondary symptoms.
A course with a psychomotoric therapist and advices from my girlfriend has taught me this.
The exercises I do now really feel beneficial to me. Amount of back pain is reduced to almost nothing. Headaches caused by stiff neck and stress is reduced. All because I won’t stop trying to figure things out….
Coming from a lot of resting and relatively no stress I can feel somewhat energized. But the feeling of fatigue is less than one hour away still, and that can be frustrating. But I have come to terms with the fact that this is how it is – for now anyway. And I feel that I’m getting better a little at a time. I hope it’s not just wish-thinking…..
Yesterday I came down with a regular cold. Comes with the season, and especially when you have kids roaming in germ factories like schools.
All hearing aid users probably know this: being hard of hearing makes you a extra deaf when being “stuffed” and having to blow your nose every ten minutes or so… But for people who do not know how it is to be hard of hearing and use hearing aids, it’s virtually impossible to understand the impact of a common cold on hearing aids users. This is what I want to try and explain now.
When common cold occurs, one is likely to get an increase in internal pressure in the neck/throat region due to various swollen glands. This in turn puts pressure on internal organs in the head, hence headaches, light-sensitivity and REDUCED HEARING. When the cochlear has more internal pressure where the hair-cells are situated, the gel-substance that carries the sound waves to the hair-cells is a little less sensitive. That means that the overall amount of energy that reaches the hair-cells in cochlear is being reduced.
Then there’s also the impact of all the fluids that forms in the sinuses.
With reduced hearing in the first place, such an reduction on the hearing gives a larger effect on hard of hearing, thus making us more deaf.
Aside from the normal symptoms of common cold that makes you tired, feverish and so on, it also makes near deaf’s have to put even more energy into the business of communicating.
I propose that near deaf need an extra low threshold for sickness leave from work etc. It is also important that the employer understand the fact that common cold has a stronger impact of people with hearing disability.
While living my life, with the absence of the working life strains, I still have to deal with stuff that is quite heavy.
First out is the tinnitus. Coming on strong in the evening and especially before sleep, I can feel the phase-shift as I have taken out my BTE HA (behind-the-ear hearing-aid) and the sound-world has disappeared.
After only a few minutes the concert starts with mid-level frequency sounds (where I have never ever had a sound chart reading above 110 Db) trying to find the right tune, just like violinist warming up before a show. The level of sound varies a little, and I have different sounds in the right ear from left ear. In short: a cacophony just as a whole orchestra is warming up before a concert…
Sometimes I get a spike of sound. A sound very distinct almost like the ping sound a submarine uses in it’s sonar just lasting a little longer. And that sound startles me every time, since it’s very loud. And it pops up in both left and right ear totally randomly.
Then there’s headaches. I get headaches almost daily for what feels like very different reasons. Sometimes it’s the overload of sounds either in loudness or in durability. Other times it’s strain headaches from stress from various situations, or just plain stiff neck. And the wintertime low sunshine on clear days can also induce headaches. Seems like I have a low tolerance for headaches. Just checked my brain with MR and x-rays and all results came back negative, which is good news. One less thing to worry about.
I have taken some actions to fight the headaches, and I think I’m on the right path. I have started doing exercises for my neck. And I’m doing it very slow and careful now in the beginning, as I get headaches from doing these simple exercises.
Most HOH and near-deaf people have one thing in common: we move our head forward as to signal to anyone that we need to hear better. I think it is also an instinct in order to make the distance between us and the source of sound as short as possible.
My neck is very agile going forward, but back and to the sides, it’s as stiff as a stick…. So these exercises, bending my head back and forth, from side to side, and rolling my head slowly around are having an impact… I can feel the cracking of neck-bones and the headaches come bad right away, which I think is the rush of blood extending the blood vessels in my head. And my head isn’t used to those extending blood vessels, thus giving me headaches… I hope it’s temporarily, because if it is, I know I’m on track of doing something that will improve my day to day shape.
Then we’re on to the fatigue… Tinnitus and headaches clearly attributes to the fatigue, no doubt. I have also recently heard about a phenomenon called “recruitment” that could explain the sensations I get from my ears and the following feeling of fatigue and exhaustion. Will read more about that later, and research it too. See link to the article I found under the heading: “Special Subjects”.
Depression is also a common factor resulting in fatigue… Am I depressed??? I really am not sure… Sometimes, yes I would say I’m depressed, other times I’m as happy as a lark in the sky singing away… So, you tell me…
After new rounds with both Rikshospitalet and Haukeland I have reached a decision. Rikshospitalet asked if I was willing to be operated at Haukeland within 6 – 12 months. For several reasons, I declined to that very tempting offer. Given my situation, I need a solution quick, but Haukeland could not meet my first priority demand. And that is to get the Advanced Bionics Implant (see link in my Blogroll on the right side of this Blog). Apparently Haukeland only offers the Austrian “MedEl” or the Australian “Cochlear”, while Rikshospitalet also has recently started offering Advanced Bionics to their patients.
To me the prospect of (among many other advantages and future possibilities) being able to listen to music with 120 frequency bands as opposed to the “regular” 22 frequency bands the number one reason. Other reasons to decline the offer on going to Haukeland and get the thing done ASAP is the fact that all follow-up afterwards has to happen in Bergen where Haukeland is situated. Being the proud father of a 7 year old boy, that will present some practical problems during that period of up to one year.
I got in touch with the right people at Rikshospitalet, finally, and I even spoke to them face to face in their office, so now I know who to contact, where to visit them and the communications has been established and a lot of uncertainty has been eliminated.
Now I know a lot more about the future years. I am currently at abouth the 100th person on the list to be operated, and Rikshospitalet operates about 2 patients a week. I will have to be patient (pun intended 🙂 ).
At the time I managed to establish communications witht the right people at Rikshopitalet; I also had found out about a government-funded foundation that has been established to finance people (like myself) who could be working, but needs healthcare-services today rather than later. The Foundation is called “Raskere i jobb” (“Faster back to work”) and hasn’t been fully implementet as of yet. It’s a current ongoing process of setting up rules for the foundation as well as getting the funds released to the various hospitals. I don’t think the money can be used in a foreign country, but maybe??? I will have to investigate more and get back to that.
I asked Rikshospitalet that they considered my name in regards to those extraordinary funds, and that I also be considered for a simultanous bilateral (on both ears at the same time) CI-operation. I will write more about the 1 versus 2 CI-implants at a later time and why I’m willing to do it. They have answered and told me they will get back to me.
I expect to have to fight for getting bilateral CI-implants as the consensus today is to operate only one implant at the time. Bilateral CI-implants has only been given as part of research to understant the difference between unilateral and bilateral CI-implants. I have yet to se any real scientific works about that subject, but as a hearing-aid user, I frequently had to turn off one of mye hearing aids, making me an temporarily unilateral hearing aid user being deaf on the other ear. I KNOW THE DIFFERENCE and I will advocate that difference even through my lawyer at HLF Norway if need be! (she is a lawyer for all hard-of-hearing and near-deaf in Norway)
I spent 3 days last week attending a course about CI and how to deal with the long waiting.
First of all I must say it was a good seminar. Especially since I met a woman who has already been through the ordeals of having the CI-operation on both ears. She also works as a physical therapist specialising in psychometric movements, and knows a lot about the stress the body endures when being deaf or near-deaf. It was great talking to her and getting to know her. Inger Anita Herheim (formerly known as Fjose) is her name, and I guess there are a lot of people in Norway who owes her bigtime. Being a tremendous asset to the CI- and hearing-case in Norway, that’s no wonder.
Inger Anita had a task at the seminar, and that was to teach us techniques for handling stress and tension related to our condition. I have encountered Inger Anita once before, at another seminar at the University of Oslo, where she did the same thing. I had a revelation. As I’m prone to get headaches and suffer from severe fatigue, I’m one of her targets 🙂
I need a few things to start on the exercises she taught us, and as soon as that falls into place, I’ll be happy to report more in detail here later.
Moving on…. The seminar dealt mostly with the thoughts that the participants had. We shared experiences and stories in group sessions. Important information came to light:
I might add more later if I remember more….