We all know Audiologists we love but hate to leave because they’re “so nice.” However, we constantly return to them to reprogram our aids and eventually ask for the manufacturers’ rep to come in and help.  For some of us, it’s many hours in the Audiologists office, waiting for an appointment or just getting frustrated and “getting use to it.”   Sorry folks, but no one should have to be told to “get use to it” when it’s the audiologist who is here to help you.  Yes, we have to acclimate to the new sounds we may have missed or even put up with sounds we don’t miss, such as the sounds of flushing toilets, flatulence, burbing and so forth. 

Let’s face it, the reality is, technology, especially hearing aid technology, is changing faster than the speed of light over the past decade, actually it appears to be changing every 6 months.  I fear buying an aid today because there might be something better tomorrow.

  I had seen an Audiologist (unfortunately, with a heavy accent)  last summer who had recommended the “best of the best, top of the line, Widex Mind 440 with its Zen programs (sort of sounds like something out of a Sci-Fi magazine).  The first mistake I made, was seeing an Audiologist who is bilingual with an accent but not in the language I needed her to speak clearly in…English.  Her accent was way too heavy for me to catch what was being said during the audiological testing.  Therefore, we never really got a true reading on my word discrimination.  This was my fault and she and I should have discussed it openly and honestly.  We didn’t, because I know people who love her and are happy with her but they are all Asian. And I guess, she did not want to discuss it with me, because she may have thought I would not recommend anyone.   However, she is someone I would continue to recommend to my Asian clients to.  This was totally my fault.

The Audiologist felt the Widex was perfect for me, yet she could not get the programming quite right for ME.  We had the rep come in twice (which meant waiting additional times to coordinate appointments) and who immediately felt that the instrument I was recommended and wearing for the past month, was too high powered for me.  Jeesh! wouldn’t an Audiologist know that?  Well, as it turned out, the rep had the Widex 440 in a lower power model and she loaned it to me until a new one would arrive with a new trial period starting the day I receive the new aid.

I waited another two weeks, received the new aid but low and behold it did not have the controls I had initially requested. By the time I received the correct model and tested it for another 45 days (which brought me up to 4 months with the hearing aid), I decided the aid was not for me.  I felt that music sounded off, background noise was bothering me and all in all, the reality that this Audiologist was just not getting it right, meant I had to be selfish.  I returned the hearing aid, I was down $300 but felt the time put in to my visits were well worth this so called restocking fee.  Why they call it a restocking fee is beyond my imagination.  It’s a fee that goes to the Audiologist for their time spent with you and personally, they should get that fee if they have given you the time. We parted on good terms and no hard feelings.

What to do next?  I was actually somewhat embarrassed, as here I am in the field working with many audiologists, clinics and top surgeons, yet I could not find myself an Audiologist who I can trust to know what I need.   I spoke to friends in the field and finally after spending alot of time researching, decided that buying a hearing aid is truly a job.  You’re not only shopping for the right hearing aid, you’re shopping for the right technology savvy Audiologist who can look at you as a whole person and not just as a potential buyer.  

I can fully understand why 1 out of 3 hearing aids for senior citizens land up in their night tables. However, I do believe the numbers are higher.  I spent hours going back and forth to the Audiologist last summer through the end of October.  Can we really expect that from an elderly consumer in order to get a proper fitting?  In my case, I truly got lucky.  A good friend of mine who happens to be an Audiologist and colleague, recommended an Audiologist who I so happen to have on my list of referrals for my clients.  She swore to me that he is a whiz at programming aids.   I never recommended anyone to him because the distance for my clients would make it difficult for them to do follow ups, which are so important at the beginning, when purchasing an aid.  In all honesty, it was not the easiest location for me either but I decided if he’s good at what he does, it’s worth my time and efforts.

My first meeting was a real eye opener. Mr. Audiologist asked me several questions concerning what I felt I needed to benefit most from in purchasing hearing aids (in my case one hearing aid).  We discussed my trial periods with several aids, those I was not willing to look at and left the rest up to him.  My first meeting with him took a bit over 2 hours…..wow! that alone impressed me.  I’ve never ever had an Audiologist spend that much time in getting to know my hearing needs. 

In the end, he felt I could gain a great deal from the Oticon Agil Pro.  Due to my work life and social life, I ordered the streamer as well.  When the aid arrived, I promptly received an appointment, tested out the equipment and he wanted me to make another appointment whether I felt I needed it or not.  Before my next appointment, I made a list of concerns, questions, likes and dislikes (which there were none).  My third appointment was great and I truly felt blessed with the new equipment.  He had wanted me to return before the trial period was due but I did not feel that was necessary but made an appointment for August.  I have since received a snail mail from his office telling me how proud he was about my adjustment to the new aid. I gather he does this with all his clients and though I really did not feel the need for this feedback, I must say, that for those who need more time to acclimate, it is certainly a good and well intentioned letter.

So, my purpose in writing this long post is to say, there are excellent Audiologists out there who know what they’re doing and that sometimes, going the distance is well worth it.  I have always been an advocate to have aids fully covered by insurances and still am.  However, since I am lucky enough to afford the technology, I am grateful to have it and wish everyone could.  We need to keep advocating, we need to keep writing our Senators and Congressmen and women. Afterall, a day will come, when they too will need this technology.

It’s sort of humorous that I’ve known since I’m 19 years old, that I have Otosclerosis and that its a progressive disease.  However, when the Doctor at that time told me I would be deaf by the time I was 30 and did not go deaf, I ruled that the Doctor had no idea what I truly had.  And so, years have gone by and only recently, have I noticed my tinnitus had become incredibly loud  along with dizzy spells. 

The current Doctor explained that my audiogram looked as if I had Otosclerosis and that I would need to have a cat scan on my good ear.  He was concerned that the Otosclerosis may be spreading, possibly causing me to lose hearing and feel dizzy.  Though I had a hearing evaluation 8 months ago, he asked that I get a more recent one done.

Well, yesterday I did just that and the results were that my hearing went from mild to severe to moderate and profound.  Shock and disbelief almost gave way to denial, but being in the field of working with deaf and hearing impaired, I knew I had to deal with this and be as realistic and prepared as possible.  I was now very close to the severe range in my low frequencies when I was once on the upper mild range.

In two weeks I’ll have a cat scan and hopefully some news as to how much bone deterioration there is and if I am too lose more hearing, what time frame am I looking at.

What are my fears?  Well, first off, that I’ll never hear music again, that I’ll never hear my friends voices and worse, I won’t hear myself or my breathing.  I’m not running scared but I need to know what I’m dealing with or what I will be dealt.  The fear of being alienated and islolated from people is very real and though my girlfriends quickly responded with, “we’ll learn sign language,”  I know that girls night out won’t be the same.

For now, I want to feel that I have choices, that my options to wear a hearing aid successfully will be realistic and that control of my own life won’t be lost to dependence.

I thought to myself, I’m working too hard, I’m way too stressed, I just need a rest.  Outside of the fact that I had just returned from vacation, how much rest does one need?  In anycase, I did not rush to panic but rather waited a few days.  And as my world began to lean more to the left, my vision of everything in front of me appeared to move while my head stood still.

As the days came and went, my head went from positional vertigo to just feeling spin offs while sitting perfectly straight. I started to feel like the balls in a bingo machine being rotated.  B4, I15, O54.   Being hearing impaired and working in the field of deafness and hearing impairements, I know all too well that there are several planets I could be headed for. However, I’m still hoping that I’m just over stressed and that everyone I’m looking at is unbalanced and I’m fine.

I try not to panick because panic just clouds our ability to control and be in charge. So, here I wait for my Neuro-Otology appointment, which by the way, would have been a three month wait had I decided to go with the Dr. who takes my insurance.  My choices were wait or see another Dr. and pay up front only seeing maybe 1/8 of what I pay in.  But at this point, I want to know what it is I am dealing with. I feel as though I’m at a black jack table and not knowing what the next card is.

Is it Menieres? Vertigo? or worse scenario, a tumor?  Would I rather have menieres?  What type of choices are these?  In anycase, I will try to keep my sense of humour in all of this because without it, I’ll certainly go into panic mode and land up on Planet Mental, probably taking meds that would make my symptoms even worse.

To be continued.

 Look at computers, headphones, cellphones, xerox machines, fax machines, TTY’s, even televisions and radios. They all went from large to small and improved. Televisions stayed large and went to very thin as well.   Now, lets look at the hearing aid. Hearing aids started out as horns, something looking like the Shofa used on the Jewish holidays.

The first real hearing aid by Sonotone with a transistor was put on the market in 1952 for $229. In fact, AT&T (American Telephone and Telegraph……remember them?) gave out free transistor licenses in honor of Alexander Graham Bell. Without losing a beat, companies began producing their own aids and competing.

Acousticon put an aid out soon after for $74.50. The hearing aids were powered by batteries and worn around the waist. Could u imagine if the competition continued with prices like the ones mentioned to this day? Anyway, my point is that hearing aids have always been small, but they never quite improved and never got cheaper the way other technology has. In fact, the hearing aid price is so varied and so steep and so difficult to shop around for, that most buyers will not price them the way we do when buying a car. Not one single audiologist I’ve met or discussed with friends, have a hearing aid pricelist on their wall.

 Sure, we have the directional microphones and the programming of the aids for different environments and background noise reductions. We have the options of digital, digital programming and analog. All promising maximum speech understanding. Did u ever wonder whether it was all a gimmick? I mean, after all, hearing aids don’t provide 20/20 hearing, so why make promises u can’t keep?

All I know is that when I cut the background noise out on my hearing aid, with that advantage comes the downside, the voice i’m listening to is now lower as well. Or when there are two speakers, one behind me and one in front of me, my directional mics seem to get a little ditsy and neurotic. Point being that for some reason, the hearing aid industry has changed asthetically but not really technically. They have their new state of the art micro style differences, the ergonomic designs made especially for the boomer generation who has become so vain and forgotten their roots. And I just love when a company states, u won’t even know you’re wearing them……duh! never in a million years. I am constantly reminded that I’m wearing my aid. Whether from someone’s dumb question of “are u wearing your aid today” to “is your aid working,” or whether I am experiencing feedback that day or my ears are itching from the molds.

Naturally, I’ve accepted that hearing aids are not the perfect solution but they give me the best situation for my hearing loss. I would have preferred the aids have been more miraculously improved without convincing us they are so dynamically tuned for our specific hearing loss and that our ability to hear will be a miracle. And whats with the tiny battery? How do they expect the largest population of hearing impaired people to put that little battery into that little thingie compartment? Oh yes, they came up with a solution to that, a tape attached to the battery. And don’t forget about what happens when dropping that little battery on the floor. It’s amazing to watch a group of seniors on hands and knees looking for that stinker. It’s also amazing to see how far that little battery can travel when its not even on.

 I never lead anyone to believe that hearing aids are the all or nothing solution. Its just a temporary solution to a problem that can’t seem to be fixed by medical science thru other means, yet.

During this past summer, after a great deal of research, I purchased a $3,200 hearing aid.  You read that sticker price correctly and that was for one aid.  I tried it out for the 2 full 45 days, that was a total of 90 days due to when the rep came in to see me, she gave me a different model of the aid I was trying out that I liked better.  So they gave me the aid until the one I was purchasing came through and that day was the day my next 45 days started.  I landed up giving it back on day 105 (total days that I spent with this hearing aid which included the time I was loaned the model) and taking a $320 loss.  But hey, in all honesty, the audiologist should get paid for all the time she spent with me and trust me, she spent at least one day a week with me. I made the decision to go back to my cheap old hearing aid.

I did learn something that I did not want to face and that was, I am truly convinced that many (not all) but many audiologists cannot be  brought up to date properly due to the constant and rapid technology changes.  I am also convinced that the hearing audiologist DOES NOT UNDERSTAND HEARING LOSS as in, please don’t speak to me when the aid is out of my ear because I cannot hear you and I am not a great lip reader. 

 In the meantime, all I want is a hearing aid that works better and works to my benefit. I couldn’t care less about all these ergodynamic state of the art designs. After all, I don’t expect anyone to say, ay Pearl, cool hearing aid you got there in your ear!

You never know what you’re going to get with hearing loss. Sometimes life will surprise you and be pretty good.

A pretty good example of this would be my bi-weekly swim class.  I swim unaided.  There are about fifty women in my class.  You can imagine how the locker room sounds afterwards; women chatting, water and hair dryers running, locker doors squeaking open and slamming shut, toilets flushing.   I hear none of that.   I shower, wipe off, get dressed and dry my hair all in relative peace enjoying alternate sensations of the locker room experience—a warm shower, combined smells of body lotion and chlorine, hot air on my scalp.

Finally dried and dressed, I put in my hearing aids.  ACCKK!  NOISE!  PAIN!  Shower water blasts against tile.  A bathing suit drying machine spins into hammering thumps.  Fifty hair dryers sound like jet engines revving to take off.   Metal lockers clang open and shut continuously, as women shout to each other over the din.   I head for the quiet peace of my car as quickly as possible.

It has been six months since I got the Phonak Naidas.  I’m not sure I’ll ever get used to the noise.  While I am extremely grateful for the new clarity in speech understanding, I have to admit many other environmental sounds are unpleasant.   A normal ear miraculously filters out all that unwanted noise.  People with normal hearing might be vaguely aware, but locker room noise is not painful to them.   There are no words to describe what I hear.  The technology that allows me to hear t’s and s’s, called frequency transposition, is relatively new to the human experience.  It is anything but natural.  Nothing can replace natural hearing.

I am mostly happy with my hearing aids, but I’m just as happy to take them off when communicating with other people isn’t crucial.  I have the option to turn on my aids and socialize, or to enjoy the quiet.  All too often I choose quiet.

The SayWhatClub is a strong support group for late deafened and adults with hearing loss.  We believe strongly in helping one another through our support groups and through Education.  The University of Washington needs everyones help, especially parents who have children with hearing loss or deafness.   You can learn more about the study here https://depts.washington.edu/projhql/  The University also has a facebook page about the study.  http://www.facebook.com/pages/Quality-of-Life-of-Children-and-Youth-who-are-Deaf-or-Hard-of-Hearing/121377458983

I once tried an aid on my left ear, many moons ago, with no affects.  I wear my aid on my “good” ear from the minute I wake up in the morning until I go to bed.  The only time I usually remove it during the day, is when I get jock itch in my ear.  Since last Thursday, I’ve developed extreme pain in my ear and on the crest of the helix.  You know, that part of the ear that has nada to do with hearing.  It’s where u would stick the earmold under that little sucker.

Today is the first day I could not wear my hearing aid due to extreme pain and let me tell you, it was a real eye opener for me and the people around me.  I have never gone this many waking hours out of the house without my aid.  First off, I found the people I work with not able to deal with me.  WOW! Now for the surprise, these are my teammates and we work with the hearing impaired and deaf population and their families.

I guess it’s true when we say, you don’t know what it feels like till you’ve been in my shoes.  Hearing people really do not understand deafness, let alone a hearing loss. Maybe it’s their fear of the unthinkable.  It immobilizes people when we discuss our unability to hear.  The very idea of not being able to hear a discussion, a disagreement or the hearing persons fear to communicate with us because WE cannot hear them.  So afraid to initiate a strategy to communicate with us for fear of catching what we have. 

Then, I encountered the people in the stores, on the streets and the dangers of walking in between cars to cross streets. Naturally, I can’t use my phone, which means, I can’t communicate and others can’t communicate with me, which means I’m going to be one pissed woman by the end of this week.  I’m very social and love to communicate.   The I’m in your face type of person I guess.

Lastly, there’s my family.  Everyones has their mouths wide open to over emphasize what they want to say to me.  It’s so weird and it’s also pretty scary to actually not hear the voices of the people I love.  I guess I’ve taken the assistance I get from my aid for granted.  And friends, co-workers and family around me, have taken my hearing loss and wearing an aid for granted.  I guess now they realize I am not hearing anything and that I am truly hearing impaired though one cannot officially call me deaf.

Don’t you just love when a hearing person says, wow, you have such great speech for a person with hearing loss?  It blows my mind.

Oh by the way, my Doctor really impressed me today. The man actually took out paper and wrote the questions he had for me and had me answer them (verbally of course).  He did not want me to put my hearing aid on because of the pain.  Oh and by the way, this was my Internist not my ENT. 

Here’s one of the reasons I dislike ENT Doctors.  Many years ago, during a phase where I refused to be aided, I went to an ENT Doctor because I was having terrible sinus problems.  As soon as I tell him I have a hearing loss he calls in his audiologist to do a hearing test.   I showed him my audiogram which was taken several months ago by my audiologist. But no, he wants one from his office.  I refused.

This ENT Doctor proceeds to look in my ears after I tell him about my hearing loss, show him my audiogram and explain that I have no speech discrim in my left ear.  The man looks into my ears, looks very seriously at me and says, I don’t see why u can’t hear out of that left ear, it looks perfectly fine.  With that remark said, I stood up, said thank you for your time and left (as fast as I could).  I decided from that moment on, that people, even many well meaning and not so well meaning professionals in the field, do not understand us.  It’s as if they have deafaphobia, the unimaginable! the unthinkable! 

So what is my point?  I raise my glass to all of us for holding our heads up high, for not allowing this to drag us to the grave and for continuing to educate those who hear.

The Delta (now called Dual)  is a colorful modern looking little triangular shaped thing that looks like a . . . well,. . . it looks like a teeny tiny ‘hearing device’ of some sort– just like the name indicates.  The whole idea is that Baby-boomers don’t want to look like their parents or grandparents with drab beige BTE hearing aids on their ears.  So aids were redesigned to appeal to the Woodstock generation.  Unfortunately this was done at the expense of functionality, since the Delta was too small for FM compatibility.

Apparently there was some demand for the FM, and Oticon found a way to include it in their Dual.  If you compare instruction booklets of the Dual and the Delta, they’re virtually the same until you get to the “how to use the phone” part of the manual– not that you have to do anything differently for phone use.  The Dual automatically does it all.  It switches you to a phone program when it detects you have put a phone to your ear.  Baby-boomers like things to be automatic.   Still, its telecoil must not be all that strong because you are warned that the automatic feature may not work with all phones– and then you must attach a tiny magnet to your phone to get your electromagnetic reception.  It wasn’t clear if you have a button to activate the telecoil or “phone program”.

What an attractive device!

For those interested in a cheaper and even better looking hearing aid, there is the Bernafon, which won the International Red Dot Award back in 2007 for its outstanding design.  The Red Dot panel of judges consider more than 61,000 applicants each year.  The Bernafon Brite includes telecoil.  Even better, you can buy it  at Costco for considerably less than the Oticon Delta/Dual.

Cute- eh?

Incidentally, Bernafon is made by Siemens who also came out with a radical new looking hearing aid in 2008.  Here is the Siemens Vibe.

Siemens Vibe

It’s so small, it fits in the inner crest of your ear, but it’s not meant to be invisible, as it comes in all kinds of fun colors and patterns.

Vibe Choices

Next, there is the disposable Songbird.

Songbird

OK– NOT attractive, but it doesn’t need to be.  The ad says it’s virually invisble because it’s only the size of the top of a pen.  And best of all, it’s disposable.  Why a disposable aid is so great, I do not know, but I have to admit it would seem to take care of the problem of when you accidentally jump into the shower with your aids on.  Instead of paying another $4000.00 for new aids, you could simply chuck the wet ones and put on new dry ones.

If you are really in a pinch financially, there is another option.  Here, you have a “hearing aid” that looks like a blue tooth.   This is called the “Stealth”  I don’t know who manufactures it, but you can find it on-line.

I’m not sure if you can hear with it.  You could always pretend you were busy in a phone conversation when you didn’t hear someone.  Sells for $39.99!

I  have mixed feelings about hearing aids that don’t look like hearing aids.   On the one hand, I think it’s great that manufacturers are considering design.  Glasses come in all shapes and designs after all.  They can be a fashion statement, as well as eye correction.  I like that people are getting brightly colored hearing aids and they aren’t ashamed to wear them.  I like that some hearing aids are designed to stand out on your ear rather than to blend in.  I love that modern hearing aids have included blue tooth streamers and that they have gone back to including telecoil.  I love that discreet and ‘disposable’ is an option too.

On the other hand, I wish hearing aids didn’t carry the ‘old age’ stigma with them.   I wish people could just admit these are all hearing aids instead of “hearing devices.”