To Implant or not..

everlastingstorm

everlastingstorm

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...is a really big question right now.

Long story short, I've used hearing aids all my life and I had some sudden hearing losses that have put me more in the profound category than the severe, as well as compromise my ability to understand speech and discern sounds. My ability to understand speech and discern environmental sounds is radically different than it was, and I'm not exaggerating. I was a very successful "oral success", to the point where I could play in several school bands as well as or better than many of my hearing peers.

I have one dead ear and one ear that a hearing aid helped greatly for about 30 years (I'm 32). Could my deafness be going through a Saturn return of its own?! LOL.

I had 40% speech discrimination at 100db, at my last hearing evaluation. 100db has historically been my MCL. However it no longer is my MCL. This time I found 100db under headphones to be excruciatingly painful during the words, to the point of where every time a word was said I would feel a very sharp, shooting pain in my ear. I had no choice but to stop with the 100db. There was no evidence of infection. 95db wasn't as comfortably audible and with that I got a 20% on speech discrimination. So now I don't really have a MCL to work with.

1:1 conversations in perfectly quiet environments with the speaker facing me, from a short distance, with most people who I know so far, are not a big deal. This is really deceptive. However 1:1 conversations in those same environments with some people I've found are impossible, and these are people I've spoken with easily before. Though this is mostly doable, it's not consistent. Following a conversation among 2+ people not including me, without background noise, forget it. Speech does not sound like speech if I'm not looking at the speaker. I can no longer understand speech on Netflix or Youtube. Music sounds distorted, out of tune, or disorganized. Trying to hear in a restaurant setting that's not busy, with no noise, feels like hearing in noise. Traffic and noisy bars used to sound amplified, they do not anymore to the degree that they did, just only barely audible. I have the Phonak Naida Q SP and before this year, I was very, very happy with it. However it isn't the HA that is malfunctioning, the audiogram is the proof in the pudding.

I know that a CI will not be like normal hearing, or if I'll be able to hear all of like I did with the HA before these recent losses. I'm well aware it will take a few months or more to adjust to. However I am considering it- leaning towards it but fence sitting still. I don't know if it'll be any better, but I don't like how I'm hearing through my HA and it's not doing much for me except in 1:1 face to face.
situations. I used my residual hearing to the max for many, many years, now what I can do with it is limited to 1:1 face to face quiet environments. I don't know what to think of my audi's view on it at this point. He seems very, very textbookish and not optimistic that I'll "like", the implant, plus having a dead ear on the other side that wouldn't do well with an implant & not being fluent in ASL doesn't help things. But I have an excellent reference for what the world sounds like given my success in past years with my HA. Audi was really vague with me at my last appt and I don't know what to make of it. However I have a close friend I'm bringing to my next appointment. With residual hearing, it's not 100% useless when aided, however with the HA it is definitely very limited by the same token.

Could a CI possibly help me to hear better vs my HA? With my HA, it's odd- to be able to comprehend a face to face 1:1 conversation in very controlled settings fairly normally, albeit sounding somewhat quieter- but not be able to hear a car driving down the street or follow a small group interaction, among several other things.

___________________________
Audiogram, right ear only:

250hz---105db
500hz---100db
1000hz--95db
2000hz--85db
4000hz-75db
6000hz--110 or 115db (audiogram goes up to 100db so this was off its chart)
8000hz-100db
SDT: 90db
SD: 40% 100db/20% 95db; avg. 30%
 
your audiogram looks very similar to mine except for the SD- mine is slightly higher I think in one ear and the other is somewhere around 60% (maybe? gotta look again). I'll find out if this hearing evaluation through VR ever starts.

I'm not much help though with the CI as I am not going in that direction yet. Best bet is to research, maybe get 2nd or even 3rd opinions and look within yourself- go with what YOU feel (don't let other people's opinions sway you).

Good luck and I know how it must feel- my speech discrim seems to have deteriorated a bit over the years.
 
If you did think about CI then go for it. No one cant tell you what compares to hearing from HA to CI everyone have different levels of hearing sounds but I know is to be able to hear at varies of sounds what everyone can.

Of course surgery is always a risk.
 
find a CI clinic close to you and consider being evaluated. They will be more suited to answer your questions and discuss this with you than the HA audiologist.

I had my dead ear implanted, as I wanted sounds coming into both ears instead of just one. Of course, implanting a dead ear will be more tricky, as it takes even more time and effort for the CI to work, but it is possible. I'm at nearly the 2 year mark since getting my implant, and no it's not normal hearing, but it's hearing nontheless. I still have a ways to go, but it's on me to put in the work (I haven't been doing as much auditory rehab as I should be). Doing the better ear that has been stimulated with the hearing aid will get better results sooner than the dead ear. Of course, the experience and progress is different for everyone, it's a very individual thing. So it's hard to compare you to another similar case and say "yes the CI will work GREAT for you!" There is no way to tell beforehand how much benefit one will get with a CI.

It is definitely a lot to think about and consider. But at the very least, contact a CI clinic close to you to get some answers/ideas to your questions and thoughts. There are online CI communities, CI groups on Facebook (Cochlear Implant Experiences is a good one on facebook, all sorts of different people and experiences on there). Maybe do some research online. Check out cochlear implant HELP for information and such.
 
I say absolutely go to a clinic and get evaluated. I know you're not exaggerated the difference between severe and profound. I know I tried to explain it on here before. I have progressive loss. I didn't start losing my hearing until I was in my 20s so I've experienced the full spectrum of the audio gram. I went to college with severe loss, no problems or accommodations necessary. I've been in the profound range in my "good" okay fine better ear for about 2-3 years. The difference between severe and profound loss is......profound lol literally.

With the access you had to sound with your good ear you should be able to have access to sound, comprehensible sound. If you did the ear that's been deaf all your life maybe not. There's another poster on here that was implanted not long ago. She just had her 3rd mapping and is hearing in the 25/30 range I believe.

Anyway talk to a doc. I just enrolled for insurance on the exchange and it should start April 1st. I'll be right behind you going to a clinic :D
 
ambrosia said:
I say absolutely go to a clinic and get evaluated. I know you're not exaggerated the difference between severe and profound. I know I tried to explain it on here before. I have progressive loss. I didn't start losing my hearing until I was in my 20s so I've experienced the full spectrum of the audio gram. I went to college with severe loss, no problems or accommodations necessary. I've been in the profound range in my "good" okay fine better ear for about 2-3 years. The difference between severe and profound loss is......profound lol literally.

With the access you had to sound with your good ear you should be able to have access to sound, comprehensible sound. If you did the ear that's been deaf all your life maybe not. There's another poster on here that was implanted not long ago. She just had her 3rd mapping and is hearing in the 25/30 range I believe.

Anyway talk to a doc. I just enrolled for insurance on the exchange and it should start April 1st. I'll be right behind you going to a clinic :D
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Off topic but it just hit me what a day for your coverage to start!
 
Oh that's just evil Jane lol

The court date for my divorce was on a Friday the 13th. No problems okay good I don't think I'm jinxed :)
 
ambrosia said:
Oh that's just evil Jane lol

The court date for my divorce was on a Friday the 13th. No problems okay good I don't think I'm jinxed :)
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You seem to be just the opposite of what these dates with "meanings" say they are. Have fun with it!
 
Hi my 18 month old son has severe to profound bilateral loss .. Hes had his ha's for about 2 and a half weeks... Anyone have any advice or experiences ...how do i know if ha,s will help him enough for speech .. Or is ci his only option ... How do we tell i he benefits from them



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jmain1026 said:
Hi my 18 month old son has severe to profound bilateral loss .. Hes had his ha's for about 2 and a half weeks... Anyone have any advice or experiences ...how do i know if ha,s will help him enough for speech .. Or is ci his only option ... How do we tell i he benefits from them



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You keep asking?? :lol: You have him tested, you have speech therapy..

Maybe he picks up speech, maybe he doesn't.
 
Thanks we are getting speech therapy starting next week ... Im just nervous about speech because ci is scary ... Its surgery ... And we dont know if we want to do it ... We hope hearing aids work .. Thats why i was asking i guess for similar stories we can relate too ha ha


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jmain1026 said:
Thanks we are getting speech therapy starting next week ... Im just nervous about speech because ci is scary ... Its surgery ... And we dont know if we want to do it ... We hope hearing aids work .. Thats why i was asking i guess for similar stories we can relate too ha ha


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Nobody can tell you. People respond very differently. You just need to be patient.
 
jmain1026 said:
Hi my 18 month old son has severe to profound bilateral loss .. Hes had his ha's for about 2 and a half weeks... Anyone have any advice or experiences ...how do i know if ha,s will help him enough for speech .. Or is ci his only option ... How do we tell i he benefits from them



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Click to expand...

He is just two and half month; more space to observe. He won't suddenly show result;lol. How about looking at the option of learning sign language with him? What I have seen some babies start sign earlier than those babies who start to talk. But if you are looking for other option, you gotta wait and observe. Because he is just a small baby now. But learning sign language wont hurt more than surgery, wait, sign language does not cause pain at all! While you wait for hint of his result,you could teach him some sign language!!

About the poster about; better seek professional opinion about it;i.e get it evaluated and see what is best for you. I hope CI work for you.
 
jmain1026 said:
Hi my 18 month old son has severe to profound bilateral loss .. Hes had his ha's for about 2 and a half weeks... Anyone have any advice or experiences ...how do i know if ha,s will help him enough for speech .. Or is ci his only option ... How do we tell i he benefits from them



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Click to expand...

There have always been kids with "deaf" losses who have responded well (ie gotten to HOH listening levels) with aids, so no the CI is NOT the only option.....If he's responding to sound that's a good thing! It might turn out he NEEDS the CI,and gets very poor benifit from aids...but at the same time he might really benifit from traditional BTEs....Many kids do benifit from them.....I guess its hard to tell b/c everyone responds differently to different technologies......
 
jmain1026 said:
Hi my 18 month old son has severe to profound bilateral loss .. Hes had his ha's for about 2 and a half weeks... Anyone have any advice or experiences ...how do i know if ha,s will help him enough for speech .. Or is ci his only option ... How do we tell i he benefits from them



Sent from my iPhone using AllDeaf
Click to expand...

2 and a half weeks is not enough time to develop speech if he has not had constant, audible access to speech/sound for at least a portion of the time before his hearing loss. Can I ask when he was diagnosed? Was he born hearing? Did he have a loss over time? These days most states have newborn hearing screenings in place so unless he was born hearing 18 months is rather late by today's standards to be diagnosed with some kind of hearing loss (unless like I said if he appeared to be hearing from birth). I am not a doctor, but I do have a Master's degree in Child Development/ECSE with concentrations in early childhood deaf ed so I know what I'm talking about in terms of the time to need receptive language/language input before any form of speech or expressive language is developed.

The speech therapist should be able to give you an idea of when you would expect speech to start developing and he/she would also be able to tell you when it's a concern in your son's case. Meanwhile, talk to you child's audiologist too and see about a CI evaluation. Everybody hears differently with hearing aids. They would be able to give you more information.
 
Thanks for the feedback everyone ill keep u updated ... He hears alot ofoe sounds than before and is babbling alot more now too haha more alert and not shy around people .. Haha he says mama but nothing else yet... So we will see ...


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everlastingstorm said:
These days most states have newborn hearing screenings in place so unless he was born hearing 18 months is rather late by today's standards to be diagnosed with some kind of hearing loss (unless like I said if he appeared to be hearing from birth).
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I wasn't diagnosed until I was five years old and I have congenital hearing loss..
 
mev426 said:
I wasn't diagnosed until I was five years old and I have congenital hearing loss..
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You're 17. Some states had newborn hearing screening programs and some did not in the mid 90s. Although the beginnings of these programs existed earlier, EHDI programs didn't take off until a few years later, between 1999 and 2002. And even though something might exist, it takes YEARS for it to get written in as a policy, law, and for it to become a standard practice. Now they just had something in 2010.

Early Hearing Detection and Intervention | National Association of the Deaf

Congenital usually means that you were born with it. So unless you have a mild hearing loss I can't see how it could have been overlooked until you were that old.
 
Have you decided yet if you're going to look into getting one?
 
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