told i have congenital cochlear malformation at 39

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Haxsaw

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I'll try to make this as short as I can, I know there are many who are a lot worse off than me and my heart goes out to them.

Here's my story, at the age of 39 I've been told I have congenital cochlear malformation on both sides. I had(as far as I know) perfect hearing until the age of around 32-33, and then I started having to turn the TV up and slowly started saying "pardon/what" in conversations more and more, until now I really cant watch TV without subtitles and miss probably 40% of exactly what people are saying.

I've since been to two specialists. The first one just tested my hearing and said I've had bad hearing since I was young, which was totally wrong since in previous hearing tests at work my hearing was absolutely fine. So I went to another ear specialist and had more tests done including an MRI which revealed that I have cochlears with a maximum of 1.5 turns and the specialist said that up to 4 turns was normal. Yet now I get home and google this as it's all new to me and I read that a maximum of 3 turns is normal, and I'm thinking WTH do I have to do to get good advice these days.

Anyway, I'm now trying to decide on a hearing aid, Ive been told my left cochlear is worse than my right but my hearing in my left ear is alot better than it is in my right, to the point I've been told just to worry about getting a hearing aid for my left ear at this stage(roughly 40% loss in left, and 60% in right, all in just over 5 years). As an electrician in the construction industry I need to get the best money can buy to block out loud noises and I also now have tinnitus so I'd say my days are numbered and within 5-10 years my job would have made me that deaf that I will be forced to leave the industry and will be on the border of being totally deaf by then.

So now I have more questions than answers, firstly:
1/Is it normal to have good hearing for 33 years with 1.5 turns only
2/If I have 1.5 turns now could I have had more when I was younger?(in case you haven't guessed I'm so ignorant on this subject)
3/have I found some of the most ignorant ear specialists known to man?
4/What does anyone suggest as the best hearing aids one can buy, and if they are not rechargeable, is it really true that some new high powered devices require new batteries every 3-4 days

Thanks in advance to anyone who can help my ignorant self on the subject, any help would be much appreciated. I'm a bit depressed about the whole situation at the moment as it's just sinking in that I may soon be totally deaf, and struggle to provide for my family, I'm already called "deafy" by some at my work, and I'm constantly avoiding interaction with others due to soooo many awkward situations where I don't even know what they are saying to me.
 
Just glancing thru your story, one question quickly comes to mind: Why would your deafness prevent you from continuing to be an electrician?
 
thanks for the reply

I say that because even now it is hard to know what people are saying, and if im totally deaf there is almost no way I could function properly at my job. People calling me and I cant hear them, when someone is saying we have to do this and that(as I work on large construction sites and have to talk to fellow electricians and builders other tradesmen etc. People calling me from a distance, the safety factor if someone says "look out" and I cant hear them well it could even cost me my life, being called "deafy", people constantly looking at me like im a total retard because I cant hear them properly(cant imagine if I couldn't hear them at all, theyd basically fire me immediately I'd imagine). The total awkwardness all the time even with only moderate hearing loss is just too much to deal with, once fully deaf well I'd either knock one of these smartarses out or theyd knock me out, at best I'll lose my job anyway. The list goes on
 
Even though there are plenty of deaf electricians, if you are certain you won't be able to function without hearing, get a referral from your Dr. to vocational rehabilitation services in your state and they will help you be trained for something you can do.

And hearing aid batteries even with a deep loss usually last about a week.
 
Haxsaw said:
thanks for the reply

I say that because even now it is hard to know what people are saying, and if im totally deaf there is almost no way I could function properly at my job. People calling me and I cant hear them, when someone is saying we have to do this and that(as I work on large construction sites and have to talk to fellow electricians and builders other tradesmen etc. People calling me from a distance, the safety factor if someone says "look out" and I cant hear them well it could even cost me my life, being called "deafy", people constantly looking at me like im a total retard because I cant hear them properly(cant imagine if I couldn't hear them at all, theyd basically fire me immediately I'd imagine). The total awkwardness all the time even with only moderate hearing loss is just too much to deal with, once fully deaf well I'd either knock one of these smartarses out or theyd knock me out, at best I'll lose my job anyway. The list goes on
Click to expand...

Gosh, what a pitiful excuse.
first of all, you can always text, if you feel embarrassed about the reason why texting - you can pretend it's about the phone package you have - calling is expensive, texting free ;)


People calling me from a distance, the safety factor if someone says "look out" and I cant hear them well it could even cost me my life,

If you really want to keep your job, I am sure there are devices you can give to people you work with, such as a simple pager with text.
instead of calling out to you, they could page you to let you know 'look out'.
and if time allows, also text you to explain what's going on.

being called "deafy", people constantly looking at me like im a total retard

Please do not disrespect mentally disadvantaged people.
please express yourself without resorting to such words.

Secondly, being deaf is privilege.
Deaf people, as you just discovered, have to deal with and combat many difficulties stacked against them on a daily basis, and they do it brilliantly! :h5:

Hearing people can only being to scratch their head and work hard at thinking in a situations where a "deafie" just fly by.

You just joined this wonderful bunch of Peculiars*
who can do anything they ever want to.

You are just new at it, so a bit rattled which is understandable, but fret not, 'cause if you continue to believe in yourself, there is no reason you can't do whatever you set out to do.

The key word here is - confidence . being deaf has nothing do do with confidence - your self esteem have.

Look what self esteem of these people make them achieve:

Marlee Matlin
MTE5NDg0MDU0NzM1OTgwMDQ3.jpg


Deputy Susie Cambre
cache.ashx

Home

Signmark
https://www.youtube.com/watch?v=F9jVd5U4j5I
Signmark Official » Bio


MD Philip Zazove, author of
[ame="http://www.amazon.ca/When-Phone-Rings-Bed-Shakes/dp/1563680246"]http://www.amazon.ca/When-Phone-Rings-Bed-Shakes/dp/1563680246[/ame]

Philip Zazove MD | University of Michigan Health System

just to name a few.

and you are freaking out about being an electrician :D

Fuzzy
* anybody read
[ame=http://www.amazon.ca/Miss-Peregrines-Home-Peculiar-Children/dp/1594746036/ref=pd_bxgy_b_img_y]Miss Peregrine's Home for Peculiar Children: Ransom Riggs: 9781594746031: Books - Amazon.ca[/ame]
 
Haxsaw said:
thanks for the reply

I say that because even now it is hard to know what people are saying, and if im totally deaf there is almost no way I could function properly at my job. People calling me and I cant hear them, when someone is saying we have to do this and that(as I work on large construction sites and have to talk to fellow electricians and builders other tradesmen etc. People calling me from a distance, the safety factor if someone says "look out" and I cant hear them well it could even cost me my life, being called "deafy", people constantly looking at me like im a total retard because I cant hear them properly(cant imagine if I couldn't hear them at all, theyd basically fire me immediately I'd imagine). The total awkwardness all the time even with only moderate hearing loss is just too much to deal with, once fully deaf well I'd either knock one of these smartarses out or theyd knock me out, at best I'll lose my job anyway. The list goes on
Click to expand...

Best bang for your buck recommendation is Widex Super 440. Look into them....as for your job, I think you can still work in the field but in a different environment. Try to see if a Voc agency can get you a job for the state or working with a private company.


Laura
 
Audiofuzzy said:
Gosh, what a pitiful excuse.
first of all, you can always text, if you feel embarrassed about the reason why texting - you can pretend it's about the phone package you have - calling is expensive, texting free ;)


People calling me from a distance, the safety factor if someone says "look out" and I cant hear them well it could even cost me my life,

If you really want to keep your job, I am sure there are devices you can give to people you work with, such as a simple pager with text.
instead of calling out to you, they could page you to let you know 'look out'.
and if time allows, also text you to explain what's going on.

being called "deafy", people constantly looking at me like im a total retard

Please do not disrespect mentally disadvantaged people.
please express yourself without resorting to such words.

Secondly, being deaf is privilege.
Deaf people, as you just discovered, have to deal with and combat many difficulties stacked against them on a daily basis, and they do it brilliantly! :h5:

Hearing people can only being to scratch their head and work hard at thinking in a situations where a "deafie" just fly by.

You just joined this wonderful bunch of Peculiars*
who can do anything they ever want to.

You are just new at it, so a bit rattled which is understandable, but fret not, 'cause if you continue to believe in yourself, there is no reason you can't do whatever you set out to do.

The key word here is - confidence . being deaf has nothing do do with confidence - your self esteem have.

Look what self esteem of these people make them achieve:

Marlee Matlin
MTE5NDg0MDU0NzM1OTgwMDQ3.jpg


Deputy Susie Cambre
cache.ashx

Home

Signmark
https://www.youtube.com/watch?v=F9jVd5U4j5I
Signmark Official » Bio


MD Philip Zazove, author of
http://www.amazon.ca/When-Phone-Rings-Bed-Shakes/dp/1563680246

Philip Zazove MD | University of Michigan Health System

just to name a few.

and you are freaking out about being an electrician :D

Fuzzy
* anybody read
Miss Peregrine's Home for Peculiar Children: Ransom Riggs: 9781594746031: Books - Amazon.ca
Click to expand...

Are you joking ? If something was going to fall on the guy head no one it going to have time to text him to look out ! It will be too late :roll:
 
well that's what the hard hats are for :lol:
besides, stuff falls on the hearing pple heads, too. or thru.
they too, sometimes do not manage yell "look out!" in time. text or no text:

http://netstorage.discovery.com/feeds/brightcove/asset-stills/dhc/132577576802513564100301197_PIPE_HEAD_MARKETING.jpg

http://i.ytimg.com/vi/SmfCiViOBRc/maxresdefault.jpg

so, once deaf best to stay in one's soft padded room and wait for death?
terrific...
I wonder what would Deputy Susie think of that, back when she wanted to go out there patrol them nasty streets... eeek..

Fuzzy
 
Thanks for the replies guys/gals :)

Although I'm really not sure how a deaf electrician would function even in the most deaf-friendly environment, lets say a one on one with a customer in a domestic situation(which as I explained is far from my situation and many other electricians(not to mention a lot lower wages than electricians in the construction industry, but lets roll with the most basic of work an electrician can do anyway), eg.

electrician(assuming he can talk properly like myself and hasn't been deaf from birth, but also doesn't know how to read lips): Hi, how are you today what can I do for you
customer: I'd like some down-lights here, with the switch over here and also a power point here.
electrician: sorry, I'm deaf I cant read lips and I also cant understand pretty much all of what you said
customer: oh ok ill try to speak a bit louder/clearer,....customer tries again
electrician: no sorry, I still cant even hear you speaking let alone understand you
customer: (assuming customer is one of the rare nice types) well sorry but there is nothing I can do other than right it down, whilst they give you some looks as if to say wtf are you doing here if you cant even understand what a customer wants

How many times are you going to go through that a day, and that is your best case scenario under the circumstances, and as I mentioned this is far from the case in my situation, where I can have multiple people screaming at me from a distance away. Just the other day a new guy I was working with said "I don't mean to be rude but are you deaf"(in a condescending tone, as if he was waiting for me to say no), I replied "well yeah, im pretty deaf sorry" and he looked at me like wtf are you doing here if you are deaf.

All that aside, I've worked out what they call my case and its 'mondini dysplasia', so all things considered I guess I was fortunate to have good hearing for over 30 years of my life.

I got my hearing aid(ordered the phonak q90) which ended up costing me over $5,000(around $4,500USD) here in Australia, Ive since had it tweaked once so far, and this is in my better ear only(one hearing aid only thus far as im told a hearing aid will do little for the ear that is worse), and I must say It is almost useless, especially on site/work where there is constant loud background noises, I would say the hearing aid has helped my on average about 5%, at worst it seems to make things worse and at best 10% increase in hearing/understanding.

There is very little I can do from here, except wait for better technology

Of course I don't want to stay in a 'soft padded room' scared of life itself, but when you have basically everyone you talk to getting frustrated with you, calling you names like 'deafy', trying to avoid you, and looking at you as if you have just cursed them, then one can only take that for so long, and as the best hearing aids on the market seem to do basically nothing for me and my deafness is increasing day by day, my options are limited to say the least.
 
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