I went to one of these about 10 years ago and I do recall it was mainly culturally Deaf with lots of ASL used. I took 2 years of that so know the basics, and from what I remember there was also closed captioning of the speakers. I seem to recall a booth for CI—this was 10 years or more so my memory isn’t too clear.
Even so, I think it’s definitely something to check out. It’s free and only 3 miles from my house, so why not? Maybe i’ll meet some CI users there and get some first hand info.
I have been to a few up here in the New England area. There were not any HA/CI vendors. Maybe it depends on where you are whether or not they participate. Either way it is a fun event.
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From what I remember I believe they hawk products that’s geared towards the deaf, so that should be helpful to me. And I agree it’s a fun event and also a great place to meet others like myself. I’m sure there has to be some HA & CI users there.
I made my first big goof without having my hearing aid this week. I reached up to a cabinet over the microwave and felt a rush of blasting air—it was the vent fan that I turned on THREE days ago while cooking dinner!! I had the darn thing running all that time…I felt like an idiot lol.
With my hearing aid I would notice that quickly so i’m hoping the Naida aid will give me that awareness back. Until then I have to feel it to make sure it’s off.
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Just wanted to stop in with an update. Cochlear guided me towards a place close by me in Celebration, FL that has an ENT center that does all three CI’s and to see licensed Audiologist. At the appointment i’ll meet with both the Audiologist and ENT doctor and have a complete hearing test and see if a strong power BTE can be of benefit until I can do the CI.
The earliest appointment they had available was for 11/22 and I took it (is all of Central Florida going deaf too?! lol) so I have to wait 2 months now. Ugh…but after 2 weeks without my hearing aid, i’m actually getting used to it now so it’s not as scary as it was when it first began. I miss the garble of the TV but I can deal.
I can faintly hear the slam of the microwave door, the click of opening and closing a shampoo bottle, the rattle of pills next to my ear and my bird screech if i’m right next to him. So there’s definitely something left that’s hopefully workable for a super power BTE until I can do the CI.
I will come back after the appointment with hopefully good news.
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Thanks for the update.
Sometimes openings happen sooner
Maybe they will call.
That appointment sounds like a CI evaluation.
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Possibly, but i’m not sure. When I contacted the person from Cochlear she mentioned “costs” associated with CI evaluations and apparently it’s pretty expensive just to have those done. What were the evaluation experiences like for others here? I thought it was a time extensive and done on multiple visits because they need to do tests, CT scans etc?
I believe this is just for the Audiology test and hearing aid consultation as it’s my first time there. I don’t know why the ENT is going to check me as I specifically stated this first visit was just for the Audi test & hearing aid advice.
If they don’t call before 11/22, I wouldn’t mind too much. Just knowing there’s still some kind of residual hearing left is enough to endure the wait. And the older I get the faster time seems to fly…it’ll be end of November in the blink of an eye lol.
They may want to check that there isn’t any fixable medical cause before recommending a super power aid especially since they haven’t met you previously.
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Can you ring them and ask, if someone cancels an appointment can you be moved to have that appointment?
If that is a CI evaluation appointment take a bottle of water. As the evaluation takes around 2 hours of intense concentration and listening. It really drains you, left me feeling exhausted mentally from the intense concentration.
Good luck.
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I didn’t think about that. It’s been so long since i’ve seen an ENT…i’m so used to seeing those “hearing specialists” that can’t wait to sell me their most expensive aid. It’s good that a doctor would want to check for fixable issues first, though i’d be shocked if there were any fixable issues after 30 years. But I like that they would be thorough and check for that first.
Thanks for the tips. I will give them a call and see if they’d contact me if there’s any openings.
What kind of concentration and listening is there? I know the beeps in the audi booth and that’s easy for me. Anything more than that though like whole sentences and it’s a struggle. To me it’s all sounds like garble and gibberish, so I would just sit there with a blank look on my face.
The appointment is for 2pm and they close at 5 so i’m planning on being there at least those 3 hours. I just hope i’m able to try any aids they have on hand and will bring my ear mold from my old aid just in case.
The evaluation consists audiogram, WRS, sentences, white noise with WRS & sentences. This is done with both aids and without aids.
After the AuD saw me I saw the surgeon. He wrote out request for a CT & MRI. car was to check the bone structure around the ear. And MRI was to check the placement of all the major nerves around the face and ears.
I’m in Australia so your US evaluation could be slightly different.
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I would say mine was similar. First was the standard test beeps and word recognition that we all know and hate.
Then the second part was in a booth using speakers instead of headphones, a more natural environment. So now it is sentences, at a conversational 60 decibels. First with aids in both ears then take out one aid and do it again then swap the aides ear and repeat. You are repeating back the sentence, guessing was encouraged.
Now one more time, except with background noise. In my case the background was designed to mimic people talking, kind of like the babble at a party or restaurant. The babble is at 60 decibels and the sentences were at 65. If you aren’t really familiar with decibels that is a significant difference with normal hearing that would be easy. So you do the sentences over again with both ears and then each individually.
Assuming you pass (or fail, depending on perspective) those then the surgeon/ENT will decide what physical tests they want. That may or may not happen at this appointment.
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Thanks for the detailed info. At 60-65 decibels, i’d fail miserably even with hearing aids in. It all doesn’t seem too mentally strenuous because it’s a test in a booth and there’s no pressure to get it perfect. However, if that were out in the world with someone talking to me, my anxiety would go through the roof trying to understand them.
Is the required MRI loud enough to cause further hearing damage? I have tinnitus and really don’t want my tinnitus getting louder. How long did it take to complete the MRI?
Does the CI give you hearing back down to the 10 - 20 decibel level again?
I have to wait until November 30th to see the audiologist again. I’ve regained some of my hearing since SSHL caused me to lose all hearing in my left ear. Problem is that my hearing is broken in that ear now. Everyone sounds like they have been breathing helium and are speaking from a tunnel.
I do weekly In-Situ adjustments to see how I’m progressing. Here is a copy of my latest and a
spreadsheet of all tests so far. I don’t think I will see much more improvement, if any in the future.
Mike
I think Covid has probably made many folks realize how deaf they actually are, even with HAs, when they can’t rely on lipreading due to masks! Just before lockdown happened in my region of Southern Ontario in March '20, I had noticed that my right HA seemed to be malfunctioning. I thought I had better get into my hearing clinic while I still could. To my dismay, I learned that it wasn’t my HA, my hearing was gone in that ear. It took 9 months before I could see an ENT specialist who broke the news to me that I needed an implant by writing it on a Post It note - because I couldn’t make out what she was saying behind her mask. 8 months later I got my implant. Given how long elective surgeries were postponed in our province, I am amazed and very grateful that I am ahead of the wave that I believe is coming. Masking has been a great reckoning for hearing impaired people.
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The MRI won’t cause hearing damage and should not make any difference in your tinnitus long term, it could trigger an acute attack however. And if I recall right it takes less then 30 minutes all told, not counting the time spent in the waiting room of course.
That is the range I am in with my CIs, of course that is the easy part, then comes speech understanding and such. But yes for all intents and purposes my hearing is in the normal range, for the frequencies covered by the processor.
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@pathurley Thanks much for your reply. This is just what I wanted to hear.
The day after my audiologist appointment I have another appointment with the ENT. I imagine it is to discuss my options. Hopefully he recommends the CI.
I’ve done some internet searching and Diplacusis dysharmonica explains best what I’m experiencing.
Just thought i’d drop in with another update and it’s a happy one!
The residual hearing is back!! At first it was faint sounds of slamming the microwave door and cabinets but then I began hearing my voice more and this may sound strange, and I have absolutely no explanation for it, but it SEEMS to me that I can hear my voice louder than before.
I live alone and talk to my bird (yes i’m one of those crazy people who talk to my pet all the time lol) and when I speak I usually can’t hear myself BUT for a fraction of a second…I swear I can hear my voice when I begin talking…I can hear it for a fraction of a second and the rest of the words are silent. It must sound so crazy but this is what’s happening. The first syllable i’ll hear and the rest is silence.
And if I cup my hand over the ear and speak, I can then hear myself louder than I ever did before. I can cup my ear and hear whole sentences! Can some hearing actually come back after 16 years on it’s own?!
When I take the hand away from cupping the ear, I don’t hear myself anymore but this didn’t happen before September. The doctor said I had an ear infection, but I wonder if the infection did something that actually brought some hearing back?!
I went to my neighbor and if I cup my ear with my hand, I can hear her voice, but I still have absolutely no idea what the hell she’s saying, and have to read her lips or ask her to write, but i’m really thrilled to just hear the tones of her voice with my hand cupped and this is without a hearing aid!
I’m so happy that I have no problem just staying like this… After 2 months without the hearing aid, I don’t miss all the sounds anymore that the hearing aid brought. Just being able to hear the cabinets slam, dishes clink and my voice if I cup my hear is wonderful!!
You all can see the hearing test in this thread that I posted in September…I was hearing absolutely NOTHING during the infection, which scared the crap out of me, but it seems the infection somehow gave me back some hearing!!! I know that sounds crazy.
My audiologist appointment is still set for 11/22 and i’m really interested in seeing what the audiology test will be now. I know it’s still around 90db but that’s a hell of a lot better than the 110db the Sept test was showing.
This may also sound crazy, but i’m not even in a hurry anymore to get a new hearing aid. I still can’t hear the TV no matter how loud I make it, or knocks at the door so I know I should get it just to have those things back again, especially knocks at the door for safety purposes and living alone, but after 2 months it’s just not a priority anymore.
Dare I say I don’t mind being in silence as long as I can hear the banging sounds and the sound of my voice when cupping my ear. But something happened with that ear infection because there’s definitely a bit more hearing than there was for the last 16 years.
Anyway, that’s my happy update to share. 
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Update for Audiology test appointment.
Went to appointment today and apparently you don’t see the Audiologist on your first visit. Is this normal?! I took the hearing test and after taking it, I started asking questions on if the Phonak Naida UP hearing aid can help me.
She was like, possibly but you have to talk to the Audiologist about that when you come back for your next appointment. (WTH?!) I asked her, “Aren’t you the Audiologist?!”
She said she only does the hearing tests and patients have to return to speak with the Audiologist and she only has 20 minutes with each patient so she couldn’t answer my questions as well as the Audiologist could.
I just thought that was weird because back when I went to Audiologists before I started going to those hole in the wall “hearing specialists”, I always saw the Audiologist on my first visit. It just seems like a waste to have to go twice for something that can take one visit…I wonder if they do that to bilk more money from patients?
So I made the return appointment for 12/13 to discuss hearing aid options, which is what I thought I was going to do today…The doctor quotes the Nadia for $1,700 for one which I guess isn’t so bad since they do all the programming and i’m sure it’ll have a good warranty.
Attached is my hearing test and I know there’s experts who know what all these symbols mean. I do know i’m still in the 90-100db loss range which was expected. But what does the 110db “masking” mean?! I didn’t have time to ask because I used up my “20 minutes” and I could see she was inching me along so she could get to the next patient. (This place was crazy busy and packed. I guess since it’s in a hospital?)
Also, those symbols that are written down in the 70’s range on the test. I asked the doctor what that was when I saw him next, and I think he said “vibrations”. I read his lips and at that point just wanted to get out so I didn’t ask him to write or clarify.
But I know he said the word vibrations…what does that mean?! That I have sound vibrations in the 70 db range?
Anyway, that’s my update. I really really haaaaaaaaaate going to these places lol. Really…it’s such anxiety each time I go, but i’ll go back on the 13th just to see which aid she thinks is best for me and hopefully try the Naida UP.
I was also told I could discuss CI options, but I decided that’s for later on when I have Medicare to pay 80% of it. For now, i’m quite ok with the way things are. I didn’t think I would, but after 2 months like this, i’m good.
As long as I can hear my voice and cabinets slamming…and my bird screech at me, i’m happy.
But if any of you experts out there can decipher this test i’d really appreciate it.
When I got to the point of CI evaluation testing it was either the surgeon or audiologist doing tests.
What’s your word/speech understanding scores?
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