Cochlear Implant Decision

One thing I have been meaning to announce on this blog is at the end of the month I will be getting a cochlear implant. This is a pretty big decision. I’m still pretty nervous about it, but excited too.

A cochlear implant (CI) is a surgical procedure when they put a special electrode in your cochlea. The cochlea is the snail shaped thing inside your ear that sends the information to the brain. In a normal cochlea, sound causes little hairs to move and that movement sends information over nerves to the brain.

For more information see this website:

http://hearingloss.org/content/cochlear-implants

and Wikipedia actually has some good images though I haven’t had a chance to actually read all the text:

http://en.wikipedia.org/wiki/Cochlear_implant

For someone like me with sensory-neuro hearing loss, the hairs in the cochlea don’t work very well and only respond to extremely loud sounds like those produced by a hearing aid. Unfortunately, no matter how loud the hearing aid is, there’s till gaps in the quality of the sound which make it hard for me to understand speech. I rely a lot on speech reading (aka lip reading) to understand what people say. If I can’t see the other person’s face or there’s too much background noise, I often have no idea of what they are saying. They might as well be one of the teachers in the Charlie Brown cartoons.

The implant actually has two major parts. The electrode in the cochlea is connected to a magnetic disc that lays just under the skin behind your ear. A speech processor with a microphone sits on your ear just like a hearing aid. But instead of connecting to an ear mold to send sound into your ear, it has a short cable that ends in a magnetic disk that sits on top of the other magnet under the skin. The processor sends information through your skin to the implant which stimulates the cochlea which then sends the signal to your brain.

There’s no wires or anything sticking through the skin, but they do have do drill a hole in your skull and thread the implant into your cochlea. They also shave down a circle in the bone of the skull behind your ear so that the round disk part can rest in the depression right under your skin.

A CI can dramatically improve speech comprehension for someone at my level of hearing loss, but it’s a pretty major decision. While it’s pretty low risk surgery, they will be drilling a hole in my skill and it takes about a month for that to heal up. Also, you can’t undo the surgery. Second, in most cases, inserting the electrode will destroy whatever hairs and residual hearing are left in the cochlea.  For someone who’s completely deaf in that ear, that’s not much of a concern. But in my case I still get some benefit from hearing aids, so it makes me a little nervous to give that up. After the surgery, that ear will be completely deaf unless the processor is turned on. Third, the sound you get with an implant is different. It takes a while (up to a year) for the brain to get used to it. Fourth, while speech comprehension usually improves dramatically within a few month, music may not sound right any more.

So for a long time, an implant was something that I would have considered only if I lost all hearing in one of my ears. It’s not easy being hard-of-hearing, especially with a loss as severe as mine. But I’ve been at the same level for a long time, so it’s familiar to me. There was also the fact that I didn’t know anyone with an implant.

But when I started attending Hearing Loss Association meetings, I meet a lot of people with implants who were very happy with them. Then a friend in the neighborhood with hearing loss similar to mine went ahead with the implant. Learning from his experiences helped me feel much more comfortable with the idea of going ahead with the surgery.

But it’s important for me to keep my expectations realistic. First of all, even in the best possible outcome I still wouldn’t have normal hearing. It would be much better than what I have now, but I would still need to rely on speech reading in some situations, and noisy environments will still be very challenging. CI’s aren’t a magic cure, but they offer a dramatic improvement over hearing aids.

Second, it takes time and effort to get the most benefit from the implant. I have to wait a month to heal from the surgery before they activate it. Once they activate the implant, it takes a while for the brain to get used to the new signal, so at first my hearing may actually be worse. But over time the brain gets used to the implant and the audiologist adjust the program on the processor. They recommend doing some kind of rehab such as audio books, starting with simple kids books to give you practice. But some people say even after you’re used to the implant, it can be tiring listening to speech.

Many people hope for a “rockstar” activation where they are able to understand speech right away. I’m trying to keep my expectations low. I think it would actually be kind of cool if at first all I hear is strange robot sounds. I’m hoping if I keep an open mind and a sense of humor the process will be fun rather than stressful.

It’s a scary decision, but I think it’s the right one for me. Over the years I have tried a lot of different strategies and gadgets. I have taken sign classes and gotten more involved with both the deaf and the hard of hearing community. I don’t mind wearing hearing aids, but it’s still frustrating missing so much of what’s going on around me. I think that the improved speech comprehension of the implant will help me both professionally and in my overall life. Being a husband and a parent isn’t easy for anyone. But it’s hard on everyone when you’re constantly unsure of what others in your family are saying.

I know that many Deaf people are happy the way they are and are not interested in getting implants. I certainly respect that. But as someone who grew up and still lives primarily in the hearing world, I think this is the best decision for me.

New Hearing Aids (Part 1)

After 15 years with the same pair of analog hearing aids, I finally took the plunge and got a pair of digital hearing aids. I also accomplished what in some circles is considered to be a small miracle.  I got my health insurance company to pay for them.

For people without a hearing loss, this might be a head scratcher. “You have a hearing loss and can’t hear at all without hearing aids? Why wouldn’t health insurance pay for at least part of  it?” But, for whatever reason,  health insurance plans will almost never pay for hearing aids. This is one of the reasons people put off getting hearing aids for so long, because they are expensive and the cost is usually all out-of-pocket.

So when I recently decided to look into getting new hearing aids, I was expecting to take a big hit.  I’ve had the same hearing aids for over 15 years, and they’ve been repaired many times.  But the cost of repairing them kept going up, and after a while it doesn’t seem worth it to spend that much to keep them going for another year or two.

I called Aetna to see if they would pay for a hearing test as part of an evaluation for new hearing aids.  The customer service agent said yes, and they would pay this amount of money for each hearing aid.  I was astonished and asked her to repeat herself to make sure hadn’t misheard.  I called back several times to make sure this wasn’t a mistake and that I wasn’t missing some loop-hole. Each time they assured me they would pay, and I didn’t need to do anything other than go to an in network provider.

When I told the president of the local Hearing Loss Association of America (HLAA) about the good news, she asked me to let me know how it turned out, but said she would be very surprised if the insurance company paid. Even the audiologist was skeptical. He told me that in the past, my insurance company often refused to pay him the full amount.  What he suggested is I would pay him for the hearing aids and then apply for reimbursement myself.  Sometimes the process went better if it was the patient applying.  This sounded a little dodgy to me. But I figured if it didn’t work out, I would return the hearing aids before the trial period was over and get my money back.

Aetna rejected my initial claim. This didn’t bother me very much because I know their standard procedure is to reject large claims on technicalities until you get on the phone with them. It got a little stressful when they were still processing the claim with only a week left in the trial period.  I was starting to think I would have to use my blog to start a shame campaign against Aetna for misleading me. But in the end, after two phone calls, the claim went through and I got the reimbursement.

At first I assumed hearing aid coverage was a new benefit since I thought checked on this when I started my current job.  But the Aetna representative said they’ve been doing this since 2007. I feel a little dumb because apparently they would have paid for some of the hearing aid repairs I’ve done over the past few years too, so I could have saved a lot of money if I had checked on this earlier.

I should note that I get the most expensive health insurance my employer offers, and I think my employer (a large children’s hospital) offers better benefits than most. So other Aetna members may not have the same experience. But it never hurts to double-check with your insurance company to see if they cover hearing aids, and if they don’t, ask why not. I know HLAA is working to publicize this issue and get more insurance companies to pay for hearing aids.  This may help bring down the price of hearing aids too if sales increase.

Next: Digital vs. Analog

Hearing Loss Support Group

This week I attended my first hearing loss support group.  This was something I have been thinking about doing ever since I read the book “Missed Connections” which described an organization called Self Help for the Hard of Hearing (SHHH) which had local support group meetings throughout the country.  However, when I did an internet search on SHHH, all I came up with some confusing descriptions of financial problems and very cluttered website that was mostly ads.

But recently I found their new website.  Apparently they are now called the Hearing Loss Association of America (HLAA) and they had several monthly meetings in my area. I suspected based on the fact that there was a separate Generation X meeting (which was on a night I couldn’t go) that most of the people would be older.  And, with the exception of the chapter president, I was the youngest one in the room by 15-20 years.  But everyone was very welcoming and I got lots of good suggestions.

The thing many people seemed to agree on was that it really helps to have an FM system with a separate microphone that people can talk into.  This microphone sends the signal directly to the hearing aid cutting out a lot of the background noise.  This makes sense, but it triggers two of my personal hang ups. 

First, I did use a system like that when I was in elementary school through part of high school.  But in my last few years of high school, I decided I didn’t want to use it any more, and just made sure to sit up front in class with my regular hearing aids.  Carrying the microphone and belt unit around with me all day made me feel self-conscious, and it didn’t help that the bag my mother had gotten for it looked like a european carry all (a purse).  While no one gave me a hard time about it, and other students had fun “borrowing” the microphone after class to talk to me in it, after I while I was sick of it.

My other hang up is that it would feel weird to me to give people a microphone before having a conversation with them.  At least in school, it was part of a classroom structure where the teacher was doing most of the talking.  But the idea of giving my wife or friends a microphone, or even worse taking it to work and asking people to use to microphone to talk to me makes me very self-conscious.  And of course it gets tricky if there’s more than one person in the conversation.  Then they would have to pass the microphone around (if they remember).

But this is one of the recurring themes in overcoming a hearing loss.  I want to be able to just wear a set of magic hearing aids that will let me understand what everyone is saying (or a pair of google glasses that will caption things real time). But it never quite works that way.  Hearing aids only help you hear some of what people are saying (especially at my level of hearing loss).  I rely a lot on lip reading, but it’s amazing how good people are at moving around to hide their faces, or move in front of the person talking.

That means I have to advocate for myself, make sure everyone knows that I have a hearing loss, ask them to do things differently in a way that may or may not help me follow.  Meetings are work are always tricky.  It’s hard enough keeping up with the people in the room as they talk back and forth rapid fire, jumping from topic to topic like gazelles on speed.  Then there’s always someone joining by phone, or worse yet a phone conference call which is almost impossible for me to follow.  After a while it’s easier to just be quiet, and ask someone afterwards if I missed anything important.

Anyway, that’s why I’m starting to go to these support meetings.  I want to learn new strategies, learn about new technology, and work on being less self-conscious about advocating for myself.  And I’ll see if I can get over my microphone aversion.