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

[deafdude1]

If it doesn't give your daughter the improvement she wants, she doesn't have to wear the processor.

Then a CI may not be such a good idea. It's very expensive and incurs lots of risks. There's also a long training period. A CI isn't something to get just to see what it's like as people have said before.

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.

Exactly. We can give our opinions and provide facts. However it's up to the insurance(if applicable) and surgeon to determine candidacy. I do think they have been a little lax in some cases.

 

[Hear Again]

Then a CI may not be such a good idea. It's very expensive and incurs lots of risks.

Actually, CI surgery is considered to be one of the safest outpatient surgeries there is.

 

[deafdude1]

Actually, CI surgery is considered to be one of the safest outpatient surgeries there is.

Then this is something new I should learn. I am always reading about how risky it is and the complications, sometimes years after surgery. People talk about infections and headaches as being common?

 

[Oddball]

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!

What if she dislikes CI after she is implanted with CI? She has to consider about getting CI more carefully.

 

[yaelhass]

We just fitted our son (13, severe-profound HI) with Naida IIIup. He had a slight deterioration recently and the audie said we should concider CI's. He dosen't want to have CI's (afraid of the operation), so we don't want to pressure him and as long as he is able to manage with hearing aids we'll let him be and wait until he will ask for a CI (which could be a problem since he has an imperfect cochlea - as was seen by CT a few years ago).

 

[Hear Again]

Then this is something new I should learn. I am always reading about how risky it is and the complications, sometimes years after surgery. People talk about infections and headaches as being common?

Infections and headaches are rare when it comes to CI surgery. I have a 21 year history of migraines and I've noticed a reduction in them ever since I had my first CI surgery in 2004.

 

[deafdyke]

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

Yes, but this is different. Her daughter does not have some hearing with a hearing aid.....she has a LOT of hearing with the hearing aid....so it's not as black and white as all that.
Kat had some hearing abilty....it increased her sound perception...However THIS person has hoh hearing levels all across the board in her hoh ear.
Make sense now?

 

[lovezebras]

I personally don't think if one ear is technically hoh and the other is profound that it shouldn't be implanted... people for the most part need bilateral hearing...i have only one hearing aid right now and i'd rather just wear none since my other is getting fixed. She's not wanting to implant her good ear but her other ear that isn't hoh
My right is my worse ear and if I got to a point where my right was severe/profound and couldn't get benefit from an ha anymore and my left was only moderate/severe than I would be very upset seeing as the criteria is that both ears have to be severe/profound which I don't think makes sense as "one ear is better than none" is stupid

 

[deafdyke]

Alicia, I totally agree with you. I think that they should be a bit more easy going about implanting those with one totally dead ear and one ear that can benifit quite a bit from amplification. However, it's not as vitial to implant those people....you know?

 

[faire_jour]

Alicia, I totally agree with you. I think that they should be a bit more easy going about implanting those with one totally dead ear and one ear that can benifit quite a bit from amplification. However, it's not as vitial to implant those people....you know?

Technically it isn't "vital" to implant anyone. But again, I believe if a qualified CI surgical team approves you for a CI, you will gain benifit. Maybe it won't be the benifit that Hear Again or Miss Kat gets, but it will be better than the nothing you had before!

 

[faire_jour]

What if she dislikes CI after she is implanted with CI? She has to consider about getting CI more carefully.

If she doesn't like it, she takes it off. Simple

Also, as to safety and $$. The most common complication is from wearing too strong a magnet! That's not so bad is it?

Also, insurance being lax? HA! That's a laugh. I know that parents fight every day to get their PROFOUNDLY deaf kids a single CI. There are still places where it is tough, and every single surgeon has to evaluate the child on many different levels to see if they are a candidate. You don't walk in and tomorrow have surgery. It is a lengthy grueling process.

 

[deafdude1]

Yes, but this is different. Her daughter does not have some hearing with a hearing aid.....she has a LOT of hearing with the hearing aid....so it's not as black and white as all that.
Kat had some hearing abilty....it increased her sound perception...However THIS person has hoh hearing levels all across the board in her hoh ear.
Make sense now?

Agreed.

I personally don't think if one ear is technically hoh and the other is profound that it shouldn't be implanted... people for the most part need bilateral hearing...i have only one hearing aid right now and i'd rather just wear none since my other is getting fixed. She's not wanting to implant her good ear but her other ear that isn't hoh
My right is my worse ear and if I got to a point where my right was severe/profound and couldn't get benefit from an ha anymore and my left was only moderate/severe than I would be very upset seeing as the criteria is that both ears have to be severe/profound which I don't think makes sense as "one ear is better than none" is stupid

You could always get a CI(or second one) with your own out of pocket money, most surgeons won't refuse you. It's insurance companies that are the problem. They aren't charities but in the business to make a profit.

Alicia, I totally agree with you. I think that they should be a bit more easy going about implanting those with one totally dead ear and one ear that can benifit quite a bit from amplification. However, it's not as vitial to implant those people....you know?

There is a limit of money/resources so those who need a CI the most are first in line to get one. Theres about 6 million profoundly deaf people in the world, yet only 2% of them have a CI.

Technically it isn't "vital" to implant anyone. But again, I believe if a qualified CI surgical team approves you for a CI, you will gain benifit. Maybe it won't be the benifit that Hear Again or Miss Kat gets, but it will be better than the nothing you had before!

Much easier to be approved by a surgeon than by your insurance. Most of us get more than "nothing" before CI. The more hearing a person has, the less benefit "upgrading" to a CI will give. I know of people who hear worse with CI than they do with HAs, it's a risk everyone takes.

Also, insurance being lax? HA! That's a laugh. I know that parents fight every day to get their PROFOUNDLY deaf kids a single CI. There are still places where it is tough, and every single surgeon has to evaluate the child on many different levels to see if they are a candidate. You don't walk in and tomorrow have surgery. It is a lengthy grueling process.

If it's so hard to get someone with 90+ db hearing loss insurance funding, how do people with 70, 60, even 50db manage to get insurance funding, especially when they require 70db minimum at any frequency? Do those people pay out of pocket when the insurance refuses?

 

[Hear Again]

If it's so hard to get someone with 90+ db hearing loss insurance funding, how do people with 70, 60, even 50db manage to get insurance funding, especially when they require 70db minimum at any frequency? Do those people pay out of pocket when the insurance refuses?

Remember that there are reasons why someone with the hearing levels you mentioned is approved for a CI. It may be that they are expected to lose hearing rapidly or that their cochlea are ossified and therefore CI surgery needs to be considered ASAP so that it can be done before the cochlea is completely covered by bone.

 

[Hear Again]

You could always get a CI(or second one) with your own out of pocket money, most surgeons won't refuse you. It's insurance companies that are the problem. They aren't charities but in the business to make a profit.

How many people can afford $50,000+ for CI surgery not to mention the mappings that are required post-surgery?

 

[Hear Again]

Much easier to be approved by a surgeon than by your insurance. Most of us get more than "nothing" before CI. The more hearing a person has, the less benefit "upgrading" to a CI will give. I know of people who hear worse with CI than they do with HAs, it's a risk everyone takes.

A CI surgeon won't approve you willy-nilly just because you have $50,000+ burning a hole in your pocket. It's a waste of hospital resources to perform CI surgery on people who don't really need it. Hospitals lose a significant amount of money for each CI surgery they perform. My CI center (the largest in the Midwest) only implants 7 people/year for this reason.

 

[Hear Again]

Technically it isn't "vital" to implant anyone. But again, I believe if a qualified CI surgical team approves you for a CI, you will gain benifit. Maybe it won't be the benifit that Hear Again or Miss Kat gets, but it will be better than the nothing you had before!

 

[Hear Again]

Also, insurance being lax? HA! That's a laugh. I know that parents fight every day to get their PROFOUNDLY deaf kids a single CI. There are still places where it is tough, and every single surgeon has to evaluate the child on many different levels to see if they are a candidate. You don't walk in and tomorrow have surgery. It is a lengthy grueling process.

Where do people get the idea that insurance companies take CI approvals lightly? The truth is, they don't. They require extensive information to prove a CI is medically necessary.

 

[Hear Again]

Alicia, I totally agree with you. I think that they should be a bit more easy going about implanting those with one totally dead ear and one ear that can benifit quite a bit from amplification. However, it's not as vitial to implant those people....you know?

If you agree that people who are completely deaf in one ear should be able to have CIs, why don't you think those with hearing in both ears who have 50% or less speech comprehension should have them as well?

 

[deafdyke]

Technically it isn't "vital" to implant anyone.

True, but on the other hand for those who don't respond well to aiding, it is vital to implant so they have some auditory input. This case is more "maybe it might really help them, but they've been doing well with just being aided on one side"

Also, insurance being lax? HA! That's a laugh. I know that parents fight every day to get their PROFOUNDLY deaf kids a single CI. There are still places where it is tough, and every single surgeon has to evaluate the child on many different levels to see if they are a candidate. You don't walk in and tomorrow have surgery. It is a lengthy grueling process.

Good. It SHOULD be a long process. Well.....actually wait. For those who clearly and consistantly have never receieved any benifit from HA, they should be able to be approved for CI right off the bat. They should NOT have to go through heck to get it. BUT, what you don't realize is that there are some parents out there who think that the CI is TEH ANSWER to Life the Universe and everything. Ever hear of off label use of medical products or devices? It happens. In a society where we are told to have the " Detrol Discussion" with our docs or where we're taught to think that docs have ALL the ANSWERS. Gotta have the latest devices/medications etc.
And the thing is, the CI does seem to be really hyped out there.
There's nothing wrong with promoting it, but it does seem in the last few years that the promoting is akin to what was seen with the promotion of digital aids back in the 90's.

 

[LadySekhmet]

Also, insurance being lax? HA! That's a laugh. I know that parents fight every day to get their PROFOUNDLY deaf kids a single CI. There are still places where it is tough, and every single surgeon has to evaluate the child on many different levels to see if they are a candidate. You don't walk in and tomorrow have surgery. It is a lengthy grueling process.

Where do people get the idea that insurance companies take CI approvals lightly? The truth is, they don't. They require extensive information to prove a CI is medically necessary.

it's very interesting that you said that. I had to switch to a different Medicare company because the original Medicare insurance will only pay 80%. It's not that they won't allow me have it, they don't care, I have to pay the other 20%. I switched to a different company, but had to wait until January 1st for it to be effective. Saw my surgeon on the 3rd, got approved, had surgery the next week. Through my application process of the second medicare company, I asked, "Will you cover my CI 100%?", they said yes, without any questions of the requirements.

The second one couldn't be any easier. I saw my surgeon on May 12th, got surgery on the 15th. I must have been driving the OR coordinator nuts because she set up the surgery very quickly...twice! I never had any trouble with the insurance company or I had to meet their standards for CI. I think once a surgeon says, "Yes, she is a candidate for bilateral", it's pretty much approved.

For the second surgery, I didn't even need to have approval from my audiologist because she knew that I would benefit from it very well. I'm used to having two HA's, so it was just very odd wearing just one.