CI questions

[garenio]

@cfr70

Your situation seems same as mine. My right ear has been dead since birth so i’ve always had just one ear to use. It makes me feel hopeful to see you say “spectacularly well” after just five and a half months. I always thought it was a long process adapting to the CI, but to see some have excellent results so quickly astounds me.

We do have the same similarities as far as mono hearing goes, I’ll elaborate on the circumstances prior to implantation that may have had a bearing on the outcome.

So, essentially I was managing OK with severe-profound hearing loss for 40 years with aids. While there had been a bit of a decline over time - It wasn’t the main consideration on going forwards with a CI, but that in the last year there were some unexplained frequent and persistent fluctuations that would drop all my thresholds down to profound (kind of like a loose connection I s’pose), making everything sound muffled. Very isolating and depressing.

On the day of surgery, my hearing was actually “good” (WRS 54% at normal spoken volume in that case) but I was absolutely done with the fluctuations and wasn’t up for any more of them. Got activated two days post surgery. So I’ve always had usable auditory stimulation as far as hearing went, right up to surgery, and wasn’t without sound for long. Since the CI was essentially my only source of hearing, adjustment may have sped up as a result too.

I think for you, results may take a bit longer and require a bit of work to come around, but it’ll definitely be more than what you’ve got!

@cfr70

I really don’t miss music all that much. I grew up on 70’s 80’s and 90’s music and have them all in my head that I can “play” them whenever I think of a song and then it’s in my head all day and hard to get out lol. It would be interesting to hear those songs for real again though.

Yes! The fun part of revisiting old music for me is discovering all the little nuances that I never heard in the first place. It does take time for things to sound decent as it’s a bit rough in the beginning.

@cfr70

I read about balance issues and hope that won’t be a possibility with me. I never get dizzy so maybe my inner ears function is good too. But to be honest, i’d accept some balance issues to be able to hear again. That’s how badly I miss sounds.

In the end I didn’t get any balance or other post surgery issues, all rather unremarkable in that aspect. I’m pretty much incapable of getting dizzy as I don’t have much in the way of inner-ear balance function. It was remarked that even if the surgery did reduce the function in the implanted ear, there’s so little there in the first place that it wouldn’t have much of an effect. But having the safety of the other ear was good though.

@cfr70

My mind would feel drained and fatigued just from trying to hard to decipher what was being said to me. I gather that a CI has none of that work to listen?

Listening fatigue always hit hard with the aids - it still happens with the CI but not to the level that it was previously, I find.

[cfr70]

@nelhop

I am 88 and have been implanted for a year now

Wow!! To be implanted at your age and benefiting from the CI is astounding to me. Knowing it can help you at 88 makes me feel so much better getting it at my age. I’m 51 and think that’s old lol.

Yes the masks are terrible for me. I’ve had a couple of instances in stores where I held up my little black card that says “DEAF” which is in bold white letters, and they just babbled away at me through the mask. Idiots!

Doctor visits are much better as they either type to me or lower the mask to let me lip read. One doctor wore a clear shield that I liked. But I hate these masks so much because it takes away the cues we need to understand people.

[cfr70]

@garenio

So, essentially I was managing OK with severe-profound hearing loss for 40 years with aids. While there had been a bit of a decline over time - It wasn’t the main consideration on going forwards with a CI, but that in the last year there were some unexplained frequent and persistent fluctuations that would drop all my thresholds down to profound (kind of like a loose connection I s’pose), making everything sound muffled. Very isolating and depressing.

This is how my hearing was for years in my 20’s and early 30’s…it would fluctuate daily and i’d have good and bad hearing days. It was so damn frustrating especially while working. I overheard my boss once say “he has selective hearing”. That really hurt and I wanted to punch him for saying that lol. But i’m sure it confused people so it probably wasn’t said insultingly.
I was also convinced the weather affected it too. If it were cloudy and rainy, my hearing would be low and muffled and the ear would feel full. All of it was so frustrating, that when I finally dropped all the way to profound deafness, even though it was terrible, a tiny bit of me felt relief that I didn’t have to try to listen to people anymore.

@garenio

On the day of surgery, my hearing was actually “good” (WRS 54% at normal spoken volume in that case) but I was absolutely done with the fluctuations and wasn’t up for any more of them. Got activated two days post surgery. So I’ve always had usable auditory stimulation as far as hearing went, right up to surgery, and wasn’t without sound for long. Since the CI was essentially my only source of hearing, adjustment may have sped up as a result too.

Is that common to be activated so quickly after surgery? I know there’s a 2 to 3 week interval between surgery and activation and that’s one thing I wouldn’t like. But this past week i’ve been in total silence, so that probably wouldn’t bother me as much as it would have before this happened.

I cupped my left hand over my left ear and my right hand over my mouth and whistled today and can hear that!! So MAYBE that means there’s SOMETHING there that the most powerful BTE can help until I can get the CI. Tomorrow is the audiology test and i’m prepared for the worst so anything above that will be icing to me.
If I can get back the clinking of dishes and my own voice, I would be in heaven until I am able to ge the CI. You don’t realize just how much those little everyday sounds mean until they’re gone!

@garenio

I think for you, results may take a bit longer and require a bit of work to come around, but it’ll definitely be more than what you’ve got!

I wonder though because for the last 16 years i’ve been hearing sounds around me with the BTW and voices as well even though garbled…it would be like a puzzle…i’d get a word here and there and put the pieces together to figure out what the sentence was—it was very fatiguing…after just 5 minutes i’d be drained, but I think that would make hearing with the CI easier on me? At least I think so.

[cfr70]

The hearing aid people contacted me and said the aid just needed to be cleaned and there was also wax in the tubing. They are shipping it back to me and was nice enough not to charge me anything. But that seems to be strike one because if the aid wasn’t broken, then it’s me that can’t hear with it anymore. I doubt wax in the tubing would block it that much, but I’ll see when it arrives. But it’s not looking good.

Tomorrow is my audiology test and i’m really nervous. I know i’m going to be at the very bottom of the graph and i’m prepared to see it all down at 110db. That will be strike two.

The only think left to do after that is to try the Naida Paradise UP on the highest most blaring setting possible and if that still doesn’t give me back everyday sounds around me, that will be strike three and nothing left to do but CI. It’s terrifying to say the least.

But reading all your stories in various threads about your journey’s after being implanted have kept me positive and with hope. At this point it’s not fathomable to be able to hear the things many of you describe. It just doesn’t seem possible and I maybe someday i’ll come back and read this post and laugh…but right now it seems so far away.

I will update back tomorrow with my audiology test and try to stay positive through all this. It’s funny, my 16 year old Sun Conure seems to know something is wrong. He’s staying close to me lately and nuzzles his head in my neck. I always wondered if animals have a sense of things like this. I’m trying to keep talking to him as usual to keep him from thinking i’m mad at him lol. But it’s hard to talk when I can’t even hear my own voice! So I have to make an effort to keep talking to him.

BTW when you talk with the CI, can you hear your own voice as you remembered it? Or does it sound different to you?

[Raudrive]

@cfr70

I doubt wax in the tubing would block it that much, but I’ll see when it arrives.

Wax can totally block the sound from a hearing aid.

@cfr70

Tomorrow is my audiology test and i’m really nervous

No need to be nervous. Try to be open minded. Relax

Actually you do have any strikes against you at this time.

Your concerns about the sound with CI are not worth worrying about. CI is very similar to hearing aids. It usually within a short time becomes like sound always was before except you can just hear much better with clarity.

[pathurley]

@cfr70

Is that common to be activated so quickly after surgery? I know there’s a 2 to 3 week interval between surgery and activation and that’s one thing I wouldn’t like. But this past week i’ve been in total silence, so that probably wouldn’t bother me as much as it would have before this happened.

2 days is very unusual, at least for most people, generally it would not be healed enough at that point to used. I had to have one arm off of my glasses until the one week follow up, although maybe they are experimenting with what can be done with the off the ear options since they don’t sit on the surgical area.

@cfr70

BTW when you talk with the CI, can you hear your own voice as you remembered it? Or does it sound different to you?

I would say my voice does sound different to me but not like my recorded voice either. It is different but similar enough that I need to think about it to notice. One of the odd comments I have had is from a coworker from a different office who I hadn’t seen for about 10 months who told me that my articulation is better. I didn’t think hearing loss had effected me that much.

@Raudrive

Your concerns about the sound with CI are not worth worrying about. CI is very similar to hearing aids. It usually within a short time becomes like sound always was before except you can just hear much better with clarity.

This, do things sound different, yes, but you hear so much more and so better that you get distracted by that and soon you forget what it used to sound like before. I would actually say that I prefer having 2 implants to one and the hearing aid, because everything is consistent, what it used to sound like is immaterial.

[cfr70]

@Raudrive

Wax can totally block the sound from a hearing aid.

That’s something to keep me optimistic. But again, i’m keeping my expectations extremely low. If this is going to be the way life is for the time being, the sooner I accept it, the better. No time for false hope.
When vacuuming today, I couldn’t hear it unless I put the hose right up to my ear. That’s very bad!

@Raudrive

No need to be nervous. Try to be open minded. Relax

Actually you do have any strikes against you at this time.

Your concerns about the sound with CI are not worth worrying about. CI is very similar to hearing aids. It usually within a short time becomes like sound always was before except you can just hear much better with clarity.

That’s reassuring because i’ve only heard my voice through the hearing aid for the past 25 years going back to the 90’s with my first CIC. So if the CI is similar to hearing aids, then I should be ok.
I love to talk, but I have been really silent this past week because I can’t hear my voice anymore.

[cfr70]

@pathurley

I would say my voice does sound different to me but not like my recorded voice either. It is different but similar enough that I need to think about it to notice. One of the odd comments I have had is from a coworker from a different office who I hadn’t seen for about 10 months who told me that my articulation is better. I didn’t think hearing loss had effected me that much.

I’ve wondered about that from time to time about my own speaking. Surely hearing loss can affect how we speak over time. I’ve wondered if my way of speaking is off and I just don’t notice it and people are just polite and never correct me.

@pathurley

This, do things sound different, yes, but you hear so much more and so better that you get distracted by that and soon you forget what it used to sound like before. I would actually say that I prefer having 2 implants to one and the hearing aid, because everything is consistent, what it used to sound like is immaterial.

If I get the CI, it will be just the left ear for the time being. The right ear has been completely dead since birth so I don’t know if a CI would be possible there. If so, it would have to wait until i’m 65 for Medicare to cover it. But i’d be happy if I could hear with just the left ear for now since all i’ve ever known is one sided hearing.

I can’t imagine what hearing with 2 ears sounds like—i’ve often wondered, but just can’t wrap my head around that. Maybe one day i’ll know.

[pathurley]

@cfr70

If I get the CI, it will be just the left ear for the time being. The right ear has been completely dead since birth so I don’t know if a CI would be possible there. If so, it would have to wait until i’m 65 for Medicare to cover it. But i’d be happy if I could hear with just the left ear for now since all i’ve ever known is one sided hearing.

I can’t imagine what hearing with 2 ears sounds like—i’ve often wondered, but just can’t wrap my head around that. Maybe one day i’ll know.

I’m sorry to say, if it hasn’t worked since birth then odds are a CI won’t help it now. You can always ask, but having gone that long without input there is a good chance the nerve won’t be able to handle anything useful.

[cfr70]

@pathurley

I’m sorry to say, if it hasn’t worked since birth then odds are a CI won’t help it now. You can always ask, but having gone that long without input there is a good chance the nerve won’t be able to handle anything useful.

That’s really ok because all i’ve known is one ear anyway so getting hearing back in the left ear with the CI would be more than enough.

[Raudrive]

@pathurley

One of the odd comments I have had is from a coworker from a different office who I hadn’t seen for about 10 months who told me that my articulation is better.

This happened to me as well. My wife and my son both have told me I am speaking clearer.

[garenio]

@pathurley

2 days is very unusual, at least for most people, generally it would not be healed enough at that point to used.

It is definitely a bit unusual. My surgeon usually gives a week before activation. It was a particular request from my audiologist as going without sound for an extended period of time wasn’t ideal for me.

The surgeon was ok with this as long as he was happy with how everything looked. The only concern being that the swelling wouldn’t allow the magnet to stick. But it did with a #5 and some careful placement. Went down to a #4 a week later.

[cfr70]

Well here is strike one. Had hearing test and I had forgotten the disdain I had for “hearing specialists”. They are NOT audiologists but it will have to be a whole separate thread about that. All I will say is I rarely get a good one and I just chalk them up as a necessary evil to live with.

Had the beep test done but not the word recognition because she “didn’t have time”. Yes, she actually said that lol. I wasn’t going to argue either as I got the info I needed anyway.

Pic below of the test. It’s as bad as I thought but she told me a super power BTE can still give me sounds around me which I want back. I won’t get clarity of speech she said and I laughed because that’s been gone for years and i’m well past that as far as acceptance goes.

I showed her the Phonak Naida Paradise UP with a bunch of charts that had “coupler data” and “acoustic gain” that I didn’t understand but thought she would. I wanted to know if this would help me.

She said she doesn’t carry that brand and pretty much ignored the papers I showed her and said she fits a brand called “Audibel A4 IQ” hearing aid that I never heard of. She showed it to me and it’s TINY lol. I asked her what battery it has and she said 13. I said the Naida is 675 and would probably be more power than that.

She didn’t look happy when I said that and said she fitted lots of people in my audi range and they are satisfied. I said, ok it won’t hurt to try it and asked if I could. She pulled up a big screen on the tv and got the price…I nearly fell out of the chair…$2,750!! For ONE!!! You’re out of your mind lady!!

I told her that the Naida Paradise UP was only $1,600 for one but that didn’t phase her. This was their price. When I asked if I could try it out first, she replied that I would have to pay that whole $2,750 in full first. WTH?! Just to test it?!

No way in the world. That just doesn’t seem fair to me. I have always tried out an aid in the office before shelling out that much money. I got a copy of the audi test and said i’d think about it. Hell no.

So anyway, here’s the test. What do you experts think? Would the Naida Paradie UP help to give me background sounds? I know the CI is the only alternative left, but I really want to try that Naida first.

[cfr70]

I forgot to ask. Does anybody here wear hearing aids with similar test range? Is anyone else here this bad as me or am I the worst?! Yikes.

[pathurley]

If I recall correctly, Audibel is a rebranded Starkey, for reasons I can’t figure out. Having come from the Starkey Muse it would not be my choice for a profound loss.

Phonak’s web site should be able to provide you with audiologists in your area who carry their brand. Check around and see if you can find one that will offer you a free trial.

Hopefully they will also do their basic job, If you make an appointment for an exam, a full exam is the minimum you should provide. Admittedly you will probably have a low word recognition score, but that doesn’t mean it should be skipped.

[cfr70]

I made the appointment online for 11:30am a week ago and the day before the app’t they texted me asking if I can come in at 11:00 instead. I said I as a courtesy would try since I take public transportation, but my app’t was set for 11:30.

I wound up getting there today at 11:15am and they were NOT happy. (I was actually 15 minutes EARLY to my set app’t time! I did rush to accommodate them but they still weren’t pleased. I was rushed into the booth for the beep test and ushered out back into her office.
When I asked if I could go back in to do the word test, more to see if I could hear my own voice over the headphones, she looked at her clock and said “I don’t have time”. I was livid but kept my cool and politely asked for a copy of the test and i’d be on my way.
I learned you’ll never win an argument with these people so don’t bother trying. But yeah, I didn’t get my full appointment time yet still paid $60 on the way out for the visit.

I contacted an Ear, Nose & Throat place in Downtown Orlando per Phonak’s website that has licensed Audiologists AND they offer CI’s from all 3 companies which is great!! So hopefully this place is the better first step for me. Hopefully they reply back quickly for an appointment date and time.

[cfr70]

The more I think about it the more I am upset how she wouldn’t give me the full audiology test yet still charged me the full $60 for the visit. Notice how she wrote above the word recognition part of the chart “Unable to Test”. She WAS able, she just didn’t want to, so why should I pay full price for the test?!

I contacted them on their main website and maybe they’ll refund half the $60. I should’ve agreed to pay only half when it came time to pay since I only got half my test.

[Raudrive]

This is from this forum under resources.
It might help you with some of your questions.

Cochlear Implants for Hearing Loss: Benefits and Risks

[cfr70]

@Raudrive thanks for that link, it’s very helpful. There’s also a link within that story on “living with cochlear implants” that share people’s CI stories. And one story is a guy who was totally deaf for 35 years and has 85% speech comprehension! That really blows my mind…35 years totally deaf!!

After my appointment today I took a different bus home than I usually do and it goes past the Kissimmee Exposition Center which had a huge sign outside it that said “DEAF EXPO November 6”. I never take this bus so it was sheer luck that I took it and noticed that sign.

I think all 3 CI companies have their reps attend these things so i’m definitely going to go. I’m so glad I noticed that sign or I never would’ve known about it. I think it’ll be really helpful for me to check that out when it comes.

[zephren]

If I’m not mistaken, I think the Deaf Expo you are referring to is sponsored by Deaf Nation. If so this is a culturally deaf, i.e, signing Deaf, event. Cochlear implants companies are not usually at these shows. The vendors are usually video relay services, other accessibility services, Deaf artists or other Deaf culture subject booths. A great opportunity to connect with the Deaf community if you sign but not an HA/CI event as nearly all communication will be in ASL.