my CI update, 4 years later

SkullChick

New Member
I hate to say this but I havent wore them much past 2 half years because I was not motivated to wear them, I'm same as I was 3 months post activation, 4 years later I still cant hear lyrics in the music, I cant talk on phone, I barely can understand other people talking to me. dont get me wrong its my fault for most part i still dont use my voice to talk (I can talk but I'm terrified to talk because of my past experience in school) and I didnt get any training or therapy or rehab on learning to listen at all. everyone talk to me using sign language or say never mind or ignore me completely so i dont get any "experience" trying to hold convo with hearing people so i dont know what to do. it does work amazingly well and I can hear everything, just no motivation I guess... i just started watching switched at birth (yeah you got me into that trend lol) and it makes me feel even more useless because they all are doing well, using voices and all happy and interacting with hearing people and they all can read lips, i can not read lips if my life depends on it lol so all of what I could understand when hearing people talking to me were through listening its weird... I really dont want to feel like i wasted the insurance money on this because i didnt have right resources and motivaton now

heres your negative result on CI, its not all rose petals and bird singing like you see everyone else have lol mostly its my fault, not right resources, and evironment as well so dunno
 

Beach girl

Active Member
Thanks for posting that very honest experience.

I just finished reading Rebuilt by Michael Chorost. One thing that fascinated me was how easily his headpieces would fall off. The magnets are strong but apparently don't hold on too tightly, to avoid possibly damaging the skin.

Is that your experience too, that the headpieces can be dislodged very easily?
 

Bottesini

Old Deaf Ranter
Premium Member
Thanks for posting that very honest experience.

I just finished reading Rebuilt by Michael Chorost. One thing that fascinated me was how easily his headpieces would fall off. The magnets are strong but apparently don't hold on too tightly, to avoid possibly damaging the skin.

Is that your experience too, that the headpieces can be dislodged very easily?

:hmm: Nevermind that it is difficult to use, as long as it stays stuck to your head!

:lol:

Your can get different strength magnets!
 

KarissaMann05

Active Member
Premium Member
Aw, don't give up! You can try to start over for learning and practice. It is never too late to take a try. I am sure you actually did good job. I support you by the way. :D
 

drphil

Active Member
As a person who will cross 5 years of using a Cochlear Implant I read with interest SkullChick 's experience.

The first thing that struck me: why go through the operation in the first place? I was advised at square one-it takes a "long" time to get use to using the Implant and one must feed back to the Audi exactly what one "hears". That why is there is Mapping exists.
Another "puzzle" continuing "voice off" even though one's Implant "works" somewhat?

I don't recall much problem with the headpiece magnets either. Lucky?
My Implant is used from waking up to going to bed-every day. Major exception: swimming.

I noticed immediately that I will revert to being bilateral DEAF if disconnected.

Since joining Alldeaf.com from reading many comments-wide variety of responses to individual's experience of their Cochlear Implant.

In the end one must deal specifically with their deaf condition with whatever the consequence of their choice. Are we " social beings"?

No easy answer.
 

SkullChick

New Member
Wirelessly posted

cuz I get nothing from hearing aids and I thought things'll be easier with CI communicating with hearing people but havent really gotten people willing to talk to me and I'm afraid to use my voice to talk, I was teased and bullied growing up (I went to public school) because of my deaf accent, misprononcation and high pitch voice
 

SkullChick

New Member
Wirelessly posted

also my implant work, audiogram said I hear at 15 decibels all across frequencies just dont understand the words in noises like background music, people talking, etc. if I was in quiet room and only one familiar person talking to me I'd get 3/4 of what he/she is saying. theres nothing wrong with CI itself just my motivation past 2 half years and lack of resources too I know theres audiobooks but its hard to follow I tried once before
 

SteveESP52

New Member
Hopefully a positive outlook.

SkullChick,

I'm not sure where to start. I can't tell you what to do nor to continue trying. I'm not an audiologist by any means but I am bilateral CI implanted in 2006 Left and 2008 Right. I could hear prior to loosing my hearing so I know what things should sound like. I was without sufficient hearing for only a few months and during that short time, I could still hear but understanding speech was beyond difficult.

A little more background on me was my first implant was close to perfect per say. I was very lucky in that I could understand speech when it was activated. I account this to being implanted so soon after my hearing was gone.

My second activation was not as great as compared to my first. Although I could understand speech in a short time, it was not good enough to rely on as my only CI. Over time, it has gotten a lot better and with quite a bit of training my brain to hear with it, I can hold a phone conversation using it. I can only think that if it was my only CI, my brain would have adapted to it faster.


With your posting saying you can hear at 15db, that is pretty good but it all depends on your MAP. And just because you can hear those soft sounds, DOESN'T mean you should be able to understand speech. It in fact could make your understanding more difficult since your brain is trying to weed out the important stuff through all the garbage (softer sounds). An additional point is the sampling speed that your audiologist has selected for you. (I hope with your input) This can also play a major roll in if your able to make sense of the sounds your hearing. I say this because I run speeds of 1800, 2400 and 3500. I've used 1200 and over time can adjust to it but anything slower, I have a very difficult time understanding. But this is me and everyone is different and every ear is different. My Right learned on 1200, 1800 was hard initially. My Left, 1200 is NOT good but 1800 is comfortable. I now run 1800 on both ears and like it very well but it has taken a lot of time to adapt.


Maybe the right option in your situation is to "start over" and possibly with a different audiologist. They are not all the same. I've seen several and like a two. I'm better in what I tell them since I understand the terminology better and get better maps out of the sessions this too takes time.


Please remember, how you weighed the options when you chose to get a CI. I truly hope the audiologist and surgeon told you to have high hopes but low expectations. Some only benefit enough to be aware of surrounding noises and some can eventually understand speech. Even with a lot of work, it may never allow someone to have phone conversations but in a one on one conversation, it might work pretty well.

You have the hardware and from what you say, you can hear sounds pretty well. Now it is time to play and adjust the MAPs, speeds, sensitivity and volume levels to see what works.

Again, an audiologist can make or break an experience.

I wish you the best in your journey. If you want to give it another go, see if anyone on this forum can offer a name for you close to where you live. Maybe there is a good recommendation out there.

One other item I thought about is many states have support groups for hearing loss.
If you haven't thought about it, I have attended several "Hearing Loss Association of America - Cochlear Implant" chapter meetings in Michigan.
You might consider looking up the local chapter in Delaware if that is where you live to see if they have meetings.
When I attended the meetings, it allowed me to talk with other CI users to get ideas plus some may have been through similar situations and could offer other strategies.

Anyway, again, I wish you the best.
Steve
 

SkullChick

New Member
I have 1200 map speed. I tried 1800 and it sound chipmunky lol and slower it sound like old man voices. my hearing history is I was born hard of hearing with moderate hearing loss, lost it to profound at 17 and tried oticon sumo hearing aids at 19, no benefits so got CI at 20
 

drphil

Active Member
As the above comments makes clear- very difficult to "extrapolate" to anyone else re Hearing conditions. However, still remains -what can I do given my specific configurations?

The professional persons dealing with me- hopefully can be assistance.( This was the ongoing comment at Cochlear Implant section-Sunnybrook/Toronto to me. I was never compared to anyone else. Fortunate)

As mentioned many times at the Canadian Hearing Society/Toronto classes- Coping/dealing with your Hearing Loss-be assertive on your own behalf.

Not easy to say the least. As my user name has mentioned many times- life isn't a success only journey. It is better than the alternate!

What a "deaf accent" is-no idea. Again seek "professional" person 's assistance to ameliorate.

Potentially you have a long life ahead of you and choices you do- may alter-somewhat the consequences of your condition- and that -is up to you. Again not easy!
 

LoveBlue

Well-Known Member
SkullChick,

I'm not sure where to start. I can't tell you what to do nor to continue trying. I'm not an audiologist by any means but I am bilateral CI implanted in 2006 Left and 2008 Right. I could hear prior to loosing my hearing so I know what things should sound like. I was without sufficient hearing for only a few months and during that short time, I could still hear but understanding speech was beyond difficult.

A little more background on me was my first implant was close to perfect per say. I was very lucky in that I could understand speech when it was activated. I account this to being implanted so soon after my hearing was gone.

My second activation was not as great as compared to my first. Although I could understand speech in a short time, it was not good enough to rely on as my only CI. Over time, it has gotten a lot better and with quite a bit of training my brain to hear with it, I can hold a phone conversation using it. I can only think that if it was my only CI, my brain would have adapted to it faster.


With your posting saying you can hear at 15db, that is pretty good but it all depends on your MAP. And just because you can hear those soft sounds, DOESN'T mean you should be able to understand speech. It in fact could make your understanding more difficult since your brain is trying to weed out the important stuff through all the garbage (softer sounds). An additional point is the sampling speed that your audiologist has selected for you. (I hope with your input) This can also play a major roll in if your able to make sense of the sounds your hearing. I say this because I run speeds of 1800, 2400 and 3500. I've used 1200 and over time can adjust to it but anything slower, I have a very difficult time understanding. But this is me and everyone is different and every ear is different. My Right learned on 1200, 1800 was hard initially. My Left, 1200 is NOT good but 1800 is comfortable. I now run 1800 on both ears and like it very well but it has taken a lot of time to adapt.


Maybe the right option in your situation is to "start over" and possibly with a different audiologist. They are not all the same. I've seen several and like a two. I'm better in what I tell them since I understand the terminology better and get better maps out of the sessions this too takes time.


Please remember, how you weighed the options when you chose to get a CI. I truly hope the audiologist and surgeon told you to have high hopes but low expectations. Some only benefit enough to be aware of surrounding noises and some can eventually understand speech. Even with a lot of work, it may never allow someone to have phone conversations but in a one on one conversation, it might work pretty well.

You have the hardware and from what you say, you can hear sounds pretty well. Now it is time to play and adjust the MAPs, speeds, sensitivity and volume levels to see what works.

Again, an audiologist can make or break an experience.

I wish you the best in your journey. If you want to give it another go, see if anyone on this forum can offer a name for you close to where you live. Maybe there is a good recommendation out there.

One other item I thought about is many states have support groups for hearing loss.
If you haven't thought about it, I have attended several "Hearing Loss Association of America - Cochlear Implant" chapter meetings in Michigan.
You might consider looking up the local chapter in Delaware if that is where you live to see if they have meetings.
When I attended the meetings, it allowed me to talk with other CI users to get ideas plus some may have been through similar situations and could offer other strategies.

Anyway, again, I wish you the best.
Steve

Here is the link for HLAA in DE (not very active that I'm aware of, but I haven't checked it out lately...will do so now).
Hearing Loss Association of America - Delaware Chapters
 

SteveESP52

New Member
Skullchick,

I completely understand what your saying about voices being higher or lower in pitch. I do notice this between map speeds a little. The audiologist might be able to help you a little with this. Have they played with the "equilizer" when your getting mapped? They can turn up or down low, mid or high frequencies. They can also adjust the individual elctrodes which I'm sure you've seen. I've noticed this can have a minor to very major adjustment in how things sound.

If this makes any sense, what I hear on lower, below 1200 speed, is something that sounds more like someone talking through a fan. The higher speeds, I notice the CI runs out of power to provide the volume I am looking for. Plus at faster speeds, I've noticed the battery life can be very short.

When I was first activated on each ear, my ears could hear speech but there was a frequency shift and everyone sounded like the chipmunks. Made me laugh especially when someone was trying to be really serious when they talked, to me, it was somewhat funny. They just needed the right chipmunk jacket and it would have been perfect. So yes, I completely understand what your saying.
 

SouthFella

New Member
The higher the pps ( speed) the clearer and crisper sounds become . I am clocking at max pps of around 45,000 lol

I have had my MedEL implant for almost 4 years now and wow what a journey. It does take some work and patience in the process of training the brain to comprehend speech and new sounds.

SkullChick, take your time in deciding what you want to do and keep in touch with me if you want to chat about cochlear implant journey.
 

Anij

Well-Known Member
Wirelessly posted (Blackberry Bold )

SkullChick said:
Wirelessly posted

they only did individual electrode, not equalizier thing

I'm just curious - how many mappings have you had done?

I know a few people who didn't realise or weren't prooperly informed about how many mappings/remappings and "tweaks" they'd initially need (multiples a month in some cases).

They ended up having a few mapping appointments and then that was it ... All of them were unhappy with the result, but didn't realize that it's normal to go back for dozens of adjustments in the first year alone, as they learn to hear with the CI.

If you haven't done so in the last 6-8months, I'd encourage you to make an appointment to have your maps reviewed and adjusted - you may find that it makes a huge difference.
 

green427

Active Member
Problem is that after 5 or so years, the maps don't change much. I've had my CI for 9 years.

What I did notice was the Sprint worked very, very well, much better than the 3G...Then, the Freedom came out and was a huge, huge improvement over the 3G.

Now I have the N5's, and they put the Freedom to shame. Big improvements in speech recognition.

Yes, the audiologist can make all the difference in the world.

Skullchick: Since you are also in DE, PM me if you want to discuss the choice of audi's and the pros/cons. I don't want to mention any names on the forum.
 

Anij

Well-Known Member
Problem is that after 5 or so years, the maps don't change much. I've had my CI for 9 years.

I know - but if she hasn't worn it in 2+years, that means that she's likely not had any mappings at all during that time, which makes me wonder if she had enough early mappings. I hope she's not in a situation where she was told to go for a few initial maps (in the first few months) and then that was it.
 
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