Tag: hearing loss
One of these days, Alice….
Takes me back…
I searched to find the love within
I came back to let you know
Got a thing for you
And I can’t let go
My friends wonder what is wrong with me
Well I’m in a daze from your love you see
I came back to let you know
Got a thing for you
And I can’t let go
Some people go around the world for love
And they may never find what they dream of
What you won’t do, do for love
You tried everything
But you don’t give up
In my world only you
Make me do for love
What I would not do
My friends wonder what is wrong with me
Well I’m in a daze from your love you see
I came back to let you know
Got a thing for you
And I can’t let go
And though I only want the best it’s true
I can’t believe the things I do for you
What you won’t do, do for love
You’ve tried everything
But you won’t give up
In my world only you
Make me do for love
What I would not do
Godsends… all of you
So I put my story out there yesterday with hesitation, because on so many levels I feel blessed in this world. I did not want to come off as a whimpering woe-is-me but I was desperate for information. Just a day later I am now a member of HLAA –Hearing Loss Association of America – the nation’s leading membership and advocacy organization for people with hearing loss. It is an international, non-sectarian, educational organization of people with hearing loss, their relatives and friends. I will receive their monthly magazines full of information for people like me, plus I have three chapters to choose from here in Connecticut where I can get new information about products and research and developments while interacting with others who have dealt with the same hearing loss issues. It’s a beautiful thing. And I have to wonder, why was I never told of these resources by the three different hearing specialists I have seen throughout the years? It took the blogging community to bring these resources to me.
I’ve also heard success stories from other bloggers who have had the cochlear implant surgery and would do it again, it has been that good of an experience for them. A friend here in town who reads my blog reached out to her relative and got information for me on another implant, and so I’ll do research on that. Some of you have suffered hearing loss too, and we’ve laughed together over the daily annoyances that make up the life of a hearing impaired person… You HAVE to laugh, really.
Example: Just yesterday I went grocery shopping. I got into a long line to check out, and apparently the one next to me opened up and the store clerk was calling me to come on over to her line. I didn’t hear her. She then began waving her arms REAL BIG and I saw the waving and looked over… she pointed to her empty line exasperatedly, but by the time I saw her waving, others had too and jumped in.
Sometimes the check out person or a restaurant worker or a gas station attendant or the mail delivery person joke around with me in casual banter that you all are used to. It’s a part of everyday interaction. A word of advice that you didn’t ask for…. ENJOY those little interactions.. they warm your world, believe me. I can only hope my responses are appropriate, because most of the time I can’t hear it and I’m winging it. Sometimes… the reaction from the other party is one of a silent, odd look… and I know I got it wrong.
Restaurants are a nightmare, as are any social functions where there is any background noise whatsoever… meaning any social function whatsoever. I don’t join friends for a drink or a social outing anymore because I won’t hear the conversation, and I don’t want people I care about to have to repeat themselves over and over. It’s easier to just stay home. At the Dog Days events, I no longer work the adoptions table because with all the barking dogs and crowds of potential adopters, I cannot hear the interview I’m supposed to be giving.
Jane, a blogging friend of mine, knows my woe. She said this after my post.. and I laughed out loud. THIS is what I want for Christmas… “I think we should get T shirts that say DEAF on the front and DEAFER on the back!!
I want to thank each one of you for commenting kindly on that post, for sending vital information that I did not have before, for commiserating, for the camaraderie, for being there. I had no idea when I started blogging, what an important community it would turn out to be. Thank you, thank you – I feel as if a shroud has been lifted. Ok, maybe it’s still stuffed in my ears, but I’m no longer blind to the opportunities. I have resources.
Well that sucks
I visited my third hearing specialist this morning, and I wish I could say I walked out of there with a renewed hope for some restored hearing.
My journey began in my late twenties, when a ringing in my ears had arrived and never left. After MRI and CT scan and various other tests, it was established that I was losing my hearing but nothing more significant was occurring, so that part was a relief. About 15 years ago I met with a world renown hearing specialist who sold me a $6,000. pair of inner ear hearing aids, state of the art, that he was sure would give me much relief in the world, and I believed him. When I put then in my ears and he began writing on a piece of paper I instantly began to cry, because I could hear the scratch of the pen on paper. My husband teared up a little too.. and we walked out of his clinic thinking we had solved my hearing loss issues. Shortly after, I discovered not only was the inner ear aid extremely annoying and alittle painful, it was not giving me any clarity in speech, just a whole lot of LOUDNESS, which I didn’t need. After a month or two of trying to make it work… and this is what that specialist told me to do…. give it time… I realized it really wasn’t doing a damned thing. So I tossed them aside and moved on.
The next specialist experience was about eight years ago. He could DEFINITELY help me, hearing aids had advanced. I wanted to believe him too… so I went through the testing again and bought the newest and best digital hearing aid available.. just one this time because I was now deaf in the left ear, no need for an aid. I explained that I needed clarity, not volume, and he said the new aids gave much better clarity. $3,000. later, I walked out the door with a whole lot of loud noise….. but no clarity. After a few aggravating weeks I went back. They said I needed to give it more time. I did. All it gave me were headaches. Put back in the box after three or so months, I gave up once again.
Years passed, and my husband has an ear/nose/throat doctor for his ear wax issues. He has talked to him regarding our frustration with my hearing loss and once again … “How does she manage without hearing aids, send her in, we can definitely help her.” Skeptical, I was, of course. But I made the appointment.
That was this morning. I sit down with him and he looks in my ears and down my throat and up my nose and takes my medical history. He asks all the questions I’ve answered before and then he sends me to the booth for my third or fourth hearing test. The woman giving the hearing test says… now, repeat the word to me when I say it to you. I tell her I will not hear the word she is going to say, what would she like me to do when I don’t know what it is? She says “Why are you taking a hearing test if you can’t hear?”… I say.. I’m here because I am significantly hearing impaired and YOU people are supposed to know why I’m here. I did not put myself in this booth. She laughs and says.. OK lets try it.
Of course, I fail magnificently. New Specialist comes back into exam room afterwards with results and says… “WOW, you are significantly hearing impaired, how do you manage? Jeez, do you read lips? “
um, yes. I told them this when I walked into their office, as I do everywhere I go, so that they will look at me directly when they are talking to me.
Is it me, or is this whole thing just a little… unprofessional… or something. I mean, this is what they do for a living… deal with people who have hearing loss, right? Their reactions, although they were friendly, were a little.. odd? Juvenile? Maybe I’m being too sensitive.
Anyway.. the verdict. ” I have nothing that will help you. Hearing aids should not have been sold to you before, because they will not help the type of hearing loss you have.. you have total speech recognition loss and also volume loss.” So basically I blew $10,000 on hearing aids that were never going to help me decipher conversation in the first place. Insurance doesn’t cover hearing aids, in case you didn’t know. Yeah.. because it’s not deemed a life threatening situation, it’s not covered. It IS life altering, I’ll tell you that.
I ask Specialist No. 3 if there is anything on the horizon I might look forward to someday, and he says point blank … “No”. Just that. Awesome.
The one suggestion he has is to have a consult with a cochlear implant specialist. Now, I’ve heard of them and I’ve seen them, it ain’t pretty, but if it would restore my hearing I might consider it someday. I found out the chances are 50/50, and the noise you do eventually hear is not natural noise. You have to retrain your brain to decipher the NEW noises you would hear, if it actually works. I don’t think I’m up for it. I told Dr. No. 3 I didn’t think I could tolerate the hardware on my skull and in my ear, and he said… “well then I guess you’re not desperate enough…yet”.
More awesomeness.
*sigh* I drove home today with mixed feelings. I already knew most of what he told me, because for years I’ve been telling audiologists that their aids were not giving me any improvement and they were just poo-pooing my rejection of their products. Turns out I was validated, I was right. The attitude of Dr. No. 3 was a bit off putting, for lack of a better way to describe it… but maybe I just didn’t like the news he was delivering. I do think he was being completely honest, if nothing more helpful.
So that leaves me with the same hearing loss frustrations I have known for a while, no definite answers and only one new direction I can take that is pretty drastic with no guarantee. I’m writing about this today not for your pity, because there are so many worse things that can happen to a person and so many people who suffer from this and much more difficult ailments. My purpose for putting this out there is to ask any of you if you have experience, if a relative has experience with this surgical procedure, and what their success rate and comfort level has been.