My middle-schooler is now a candidate for CI -HELP!

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andmize

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I just joined a few minutes ago - but have been trying to research CI for weeks now. This site has been a big help - but I'm still trying to figure out what is best for my daughter - it's so hard because I have no idea what she is going through. I thought you guys might be able to give me a few clues and a direction to go with some more on point questions I could ask the doctors.

Alex will be twelve years old next month. She has been totally deaf in the right ear since birth and a has a moderate to severe loss in the left (80db at 250 rising to about 40db at 3000). She can get into the normal range (barely) with her hearing aid. Her hearing has not changed a bit in 12 years. Last week the hearing specialists said that she was a candidate for CI on her right side and we should go see the doctor now (very good doctor who has been doing CIs for 10+ years).

I am concerned with a few things. Why now? Has the technology changed that much? Has insurance coverage gotten better? How would this benefit her? I don't want to confuse her or interfere with the ear that is working. I know that there will have to be a lot of training with a "never stimulated" ear. I have asked the hearing specialists around the school and noone has a similar situation.

I would appreciate any insights, experiences, or ideas about what questions I need to ask the surgeon before I decide what route to go.

Thanks
Andrea
 
Since your daughter is in middle school, she is old enough to tell you if she wants one or not. What about asking her about it, for starters?
 
Some of her friends have CIs so she thought it might be "cool". She was actually more concerned about the color of her new hearing aid. Alex pretty much just likes to make other people happy - she'll do whatever it is that she thinks that we want. That is one reason why I want to be as informed as possible - I know she looks for the "clues" from me and I want to give her as many facts and options that I can so that she can help make this decision without being influenced by me or her "cool" friends.
 
I have bilateral CIs. I received my first CI in December, 2004 and my second in February, 2006. They've made a tremendous difference to me and have opened up the world of communication in in so many ways. I'm able to talk with others in a quiet, one-on-one environment, travel outdoors without being nearly hit by traffic (I'm totally blind) and can cross streets safely. Prior to receiving CIs, I had profound loss in my left ear (95 dB at 250 Hz with NR at 1000 Hz and above) and severe-profound in my right (90 dB at 250 Hz with NR at 1000 Hz and above). If I had to do it all over again, I would in a heartbeat. If you have any specific questions about CIs, surgery, etc. I would be more than happy to answer them. :)
 
andmize said:
Some of her friends have CIs so she thought it might be "cool". She was actually more concerned about the color of her new hearing aid. Alex pretty much just likes to make other people happy - she'll do whatever it is that she thinks that we want. That is one reason why I want to be as informed as possible - I know she looks for the "clues" from me and I want to give her as many facts and options that I can so that she can help make this decision without being influenced by me or her "cool" friends.
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It sounds like the old advice, "If your friends jump off the bridge would you?".
I would sit down with her and give her all the information that you can find. There's a lot of info regarding to surgery, recovery, activations and training on this forum.

Even though you are the one that can make the choices, but I would leave it up to your daughter. She has to understand that CI is not something to have because it's "cool". She needs to understand that things will sound terrible at first, and she doesn't just go through surgery and activation and be done with it. She will need to go back to audiologists for mapping sessions. If she is just getting it just because it's "cool", then she will more likely not use it in the future when she gets older. It's not a temporary decision, it's permanent.

I know it may sound like the doctor says she ought to have the CI now...do NOT listen to that. It doesn't matter what age someone has the CI...what matters is the maturity and the ability to go through training and all that stuff that comes with having a CI. Take your time to do research, and don't allow the audiologists or doctors pressure you for anything.

Most insurance companies will pay for one, few will pay for both.

There are three cochlear implant companies: Cochlear, Med-El, and Advance Bionics. The oldest is Cochlear, 20 years. Their internal processor hasn't really changed that much, and it still has 22 electrodes like it did 20 years ago, and I don't perceive that it will change any more, maybe smaller, but most likely the same. AB is fairly new, and they have changed the internal processor to the point where their first processor is not backward compatible to the newest external technology. Hopefully, AB will make sure the internal components will be backward compatible for future processors.
I'm not too familiar with Med-El as it's not common here in the States.

Having said that, technology is very similar to what it was 20 years ago, so it didn't really change that much...only the external processors. Cochlear has had Freedom processor for years because there's really not that much to improve on...it pretty much has been perfected (although, they could change the design a little to make it less bulky).

If she can hear very well with her aided ear, she probably will do well with bimodal approach. Since her ear has not been simulated with sound, having a CI is very different because there's a lot of factors in having bilateral "hearing". CI will sound terrible at first because her ear hasn't been simulated, but should get better over time with training.

Don't be afraid to ask us a bunch of questions and stuff. Majority of us have been there with making the decisions and stuff. Take your time to make sure you have the informed decision and share everything with your daughter...after all, it is her ear. If she keep insisting it's because she wants to be cool due to her friends, I would hold everything off until she's mature enough to understand that just because her friends does the stuff or have the stuff doesn't mean that she has to please them. :)

Hope I gave you some insight. BTW - I have NO kids whatsoever, so I have no idea what it's like to really parent a 12 year old....but I do find the more involved the kid is in making any decision, the better she/he is.

Hugs!
 
email me. My daughter is 5 and just got a CI. I would love to talk to you. faire_jour at yahoo.com
 
if possible, get your daughter in touch with maybe an adult CI user and get them to talk to her about the process and explain to her the whole procedure and the whole Cochlear Implant Option. Involve your daughter in the decision, make sure she understands. I was implanted at 10 years old, I had some understanding of the Cochlear implant process, and it was the best decision my parents had made for me.


Any questions just ask. We will be more than happy to answer them for you.
 
Cochlear has a Volunteer Advocate program which pairs CI candidates with experienced CI users in your area.

For more information, visit:

http://www.cochlearamericas.com

You might also check Yahoo Groups for an e-mail list called CI Circle. It's a list made up of parents whose children have CIs.
 
I know it may sound like the doctor says she ought to have the CI now...do NOT listen to that. It doesn't matter what age someone has the CI...what matters is the maturity and the ability to go through training and all that stuff that comes with having a CI. Take your time to do research, and don't allow the audiologists or doctors pressure you for anything.
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Good post Lady! In addition you have to be a little skeptical since your daughter's not a "right off the bat" canidate. Have to be sure that the audis aren't just "selling" it. ....and I have to say that it does seem like they are becoming a little more aggressive about "selling" CIs to the ambigious crowd.
On the other hand,, she might benifit a lot from having sound perception in her "unaidable" ear. I know I always think I can hear a lot with only one ear, but I put in my second aid, and the difference is amazing!

Alex pretty much just likes to make other people happy - she'll do whatever it is that she thinks that we want. That is one reason why I want to be as informed as possible - I know she looks for the "clues" from me and I want to give her as many facts and options that I can so that she can help make this decision without being influenced by me or her "cool" friends.
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Well it's awesome that you realize that! I applaud you as a parent.
Oh.....and what kind of hearing aid does she have? I know 12 is the age where a lot of kids opt for ITE aids......they don't amplify enough (and ah god I could have avoided SO much grief if I had realized that sooner.
 
She has always had a BTE - Oticon Personic 420 is her current aid. We tried a bicros on her other ear but she didn't like it.

We just ordered her new aid - Phonak Naida III - She did really well with the demo....but like I said she was just excited about the new color....RED (I'm surprised she didn't go for the zebra stripes!!:giggle:
 
LOL....don't you just love the colored aids? I have purple aids......
Oh something that I just remembered....is she exposed to other dhh kids? Is she OK with being dhh? Sometimes kids may opt for things b/c they feel different or whatever. I remember when I was that age.
Ask your daughter if she wants to hear on the other side. Maybe wait a few more years til she's older and has developed more. Twelve is still pretty young.
Oh.......if she's more into the "hearing impaired" side of things maybe it might be time to introduce her to the Deaf culture and ASL.....more on the fun side of being dhh rather then the hearing health 101 that most "hearing impaired" kids get.
 
Many good posts above. I also agree she should wait till 18 and she can decide on her own without anyone else pressuring her. Maybe she will want a cure by then. Her good ear has only 40db loss at 3000Hz so she may not qualify for insurance since a CI in her bad ear won't be as good as HA in her good ear. If she has any residual hearing in her bad ear and wants to look cool, she can get a color HA in that ear too :)
 
Cochlear Limited: World leader in cochlear implants and bone anchored hearing solutions. And always.. Cochlear Limited: Hear now - Cochlear Inc
BionicEar.com - Harmony Cochlear Implant by Advanced Bionics - Advanced Bionics
Cochlear Implants | Middle Ear Implants | Electric Acoustic Stimulation | MED-EL - The Hearing Implant Company - Med-El

those are the 3 cochlear implant manufacturers, so you and your daughter can go to those sites and see what they offer for their implants, and compare them. Cochlear also will match you up to other users who have implants and can share their stores. With Advanced Bionics, they have www.hearingjourney.com where you can post and chat with other AB users. As for MedEl, I'm not sure what they do as in support. There's also CIHear on Yahoo Groups (there's other CI related groups on Yahoo as well, but I don't remember them all). Redirect is a blog and resource site with advice and suggestions for people with cochlear implants or parents of children with cochlear implants, etc. there is a LOT of resource available online.

Definitely explore your options, get all the info, pros/cons, feedback, etc. as you can. Also definitely include your daughter when doing all this exploring, so she knows all that's involved as well so she can consider everything and decide if it's something she really wants to work for or if it's just not worth it (having a cochlear implant would be a LOT of work, plenty of auditory and speech training sessions as the brain is learning all the different sounds, etc.).
 
I have an 11 year old who was just re-implanted 2 weeks ago. I'll back up. My son was implanted in his right ear at 11 months old. He wanted to be bi-lateral when it was offered at 5 years old, so we did it - left ear. Then his right ear started to give him trouble. We felt he was at an age where he could decide wheter or not to re-implant his right ear. We presented the scenario to him and told him if he didn't want to be re-implanted, we would support that decision. (He knows ASL on a limited basis- as well can hear out of the left implanted ear very well). He did the research and came up to his father and I and said "No, I want to be re-implanted". He gets turned on this Wednesday. I guess the reason I am telling you all of this is that include your child in this decision. it's a big one- not to be made lightly, but the benefits are amazing. It's not a cure for deafness, nor a "quick fix", but the sound that your child will have access to is unbelievable. I had a niece who was implanted later and she says the one regret that she has was that she was not implanted earlier (parents wanted her to wait to make her own decision). Don't rush into it, but don't waste time either. Time is important in the success of the child (if you decide to do it).

Good luck!
 
Doubletrouble, on the other hand andmize's daughter can hear really well with her hearing aid.
 
deafdyke said:
Doubletrouble, on the other hand andmize's daughter can hear really well with her hearing aid.
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So could Miss Kat, and getting the CI was hands down the best decision we ever made for her (except ASL of course). I would never advise a parent to wait years to get a CI, every minute you wait is a minute you lose. For any child who is a candidate, CI's will be better than a hearing aid. If the aid was doing it's job, they wouldn't BE a candidate!

Plus, aren't they talking about implanting the dead ear? What do you have to lose?
 
andmize,


After reading thru the thread, I am wondering if u are even more confused than ever.

My advice is just research and discuss with your daughter and then go from there. I wouldnt make any decisions based on any ADers' telling u you should do this or dont do that. Nobody has the answer but you and your daughter. Just something you both probably will have to find within yourselves.



Good luck!
 
With your daughter having friends with CI's, she may have seen her friends go through the process with surgery, activation and improvement so she may have an idea what to expect.

As far as time for the deaf ear to adjust, I had my bad ear implanted after 15 years of silence. My experience with activation was very good. My brain was able to pick up on the sounds immediately, I could understand speech almost perfectly. Sounds were off pitch for several weeks but I could understand which prior to activation was a significant struggle.

With your daughter knowing what speech sounds like, it might not be to much work for the brain to understand what it is hearing in the other ear. It may not be perfect but if it is an improvement, is that what the goal is with a CI.

If it doesn't give your daughter the improvement she wants, she doesn't have to wear the processor. For me, I liked it so much and noticed such an improvement in clarity that I truely miss what I hear when the batteries quit now.

With my Bilateral CI's, I can tell the difference in left to right but the key is I can understand what people are saying without having to look at them or read their lips. Noisy situations are also easier to understand in.

I wish you luck in finding the information you need to help you and your daughter make the right decission for your lives.
Steve
 
I have to agree with shel90. For every voice that says "she needs the surgery" there will be a match that says "don't". None of what we say here really matters when it comes to your decision. CI is right for some, not for others. Only you and your daughter can make the choice for her. The best you can do is get all the information you can, from both points of view, talk it over between the two of you, and include whatever other family members are involved, as it does have impact on them as well, and decide for yourselves. Every person is unique, as is their hearing situation and needs. As long as you all come to your decision together, with an open mind, you will be fine. In either case, we are here for you if you need us.:fingersx:
 
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