Category Archives: Cochlear

A Long Awaited Update

There’s a lot going on with life now, and I’ve just not had the chance to get on here. There’s not much going on either with my CI process, however there’s a lot going on in the news that I’ve been thinking about lately and I would like to post some of those thoughts on here either today or in the next few days.

According to some people, my insurance application was submitted last Monday to my insurance company. “Some people” would be my insurance advocate at Cochlear and one person at the insurance company. However, I talked to someone else at my insurance company who said they didn’t have my information and that I would need to ask my doctor to resubmit the information. Sigh. However, if it really was turned in on Monday, then they told me that it takes 30 business days to process. So that means I’ll know by April 11. Kind of a weird feeling.

On another note, the hospital that did my CT Scan is frothing at the mouth and has sent me a letter asking me to expedite the process so they can get paid. Apparently, I have a preexisting condition and my insurance company isn’t giving them the time of day. I’ve dealt with insurance mumble jumble in a large quantity before and it’s not fun.

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The Wait

I hope this wait is a lot shorter than the previous one – as in something’s getting done rather than my case sitting around waiting for me to start annoying people. I think it will be. I’ve gotten a CT scan, CI eval and medical eval, the only thing left is for my old audiology office to send them my medical history and the office will “apply” to my insurance. So far everything looks fine and it sounds like I’m getting a recommendation by my surgeon. Big surprise!

I learned some new things my second time around. The biggest thing being that you can’t use regular hearing aid batteries for Cochlear (i.e. go to the grocery store when they die to pick up some new batteries). You have to order them over the Internet. The second one being the financial upkeep on the implant itself. The external warranty expires after three years (at least with the plan that my audiology place is asking for) and after that I have to pay warranty of about $700 a year per external piece. WOWee. But then again this is for me, not everyone else. I also get two external pieces so maybe I can ask for two different colors! Yay! I also understood more about programs. Each implant has a certain number of programs you can go through. I think AB has three and Cochlear has four. So that when you’re going through your mapping process and you don’t like one program or your brain has “learned” that program, you can move onto the next one. Another difference between AB and Cochlear is that Cochlear has a separate setting for T-coil (T-coil is my FRIEND) where as for AB T-coil would have to take up one of the three programs. I think AB has better (?) microphones, sort of? I didn’t really understand it other than you would have to constantly change the ear hook to get the microphone you want. Cochlear might not have as many options, but all the settings are on the external piece and you don’t really have to change out the ear hook.

My next step is balance testing which I get done on the 21st. I asked why I needed to get that done and why it wasn’t needed to request the insurance company to cover the implant, they said that they use this test as a baseline before going into surgery. Makes sense. I hope that I’m doing better than the baseline though, not below it! That would be annoying.

Other than that, not much going on. Just waiting to see when the surgery would be. They told me as early as Feb. But because my medical office is taking a long time to get them the records, I don’t think that’s going to happen.  So maybe March or April.

I also don’t get to get turned on the next day. That’s OK with me. They’re going to wait about two weeks. And then after that I’ll be going in every 2 – 3 weeks.

Color Me Playful

I am faced with a mini dilemma. I have always had what are called “Power Aids”. Throughout my lifetime I have noticed companies adding neat things to their “not-so-powerful” hearing aids like color and the ability to tell the audiologists how many hours you are wearing your hearing aids per day. I never had these little fun items attached to my hearing aids. Whenever a new more powerful aid was placed on the market, I got it. Of course, companies use the entire hearing aid for one purpose, hearing louder and better, no fancy stuff, no neat little gadgets. Blast the marketing techniques! I’ve always had the dreaded beige. I have looked longingly at other people’s hearing aids most of my life with some jealousy. It’s like everyone getting a Ferrari Spider while I get a Ford Taurus. It’s not fair! I tell ye! It’s not fair!

So now I actually have the opportunity to make somewhat of a decision on what I want the outer component of the cochlear implant to look like. If I go with a Cochlear CI, I have a choice of six colors:

Beige, Silver, Black, Brown, Pink and Blue

These are what the batteries look like, but it is my understanding that the whole thing will look like that color, magnet and all. Or I can get:

A mini BTE

The mini! It’ll be like having a Mini Cooper! MINI COOP! MINI COOP! Unfortunately the battery doesn’t last as long (80% of what the regular processor will last). However, I have learned that you can change the color (I think the blue part) any day you want.

Something else to keep in mind. I wear a hearing aid in my left ear which I will keep. The earmold at present is blue (it was my “something blue” for my wedding). That I can change, I’m probably due for a new one anyways – but please don’t make me change the color, I adore my blue earmold. My hearing aid, however, is beige (but of course!) and my hair is light brown. Another thing to think about is that I am working and out of college, so professionalism is always a good thing when networking. (I would be very curious to know how people see these colorful hearing aids/CIs in the workforce)

So it’s poll time!!! Which should I get?

On a side note, Advance Bionics makes them with a lot more colors and designs (which is neat to me!) and if I change my brand preference, I will post them up here.

Cochlear Implant Surgery Risk

So today I looked on the FDA’s Web site on cochlear implants. I was particularly interested in finding out what all the risks are and if anyone has died from the surgery or the cochlear implant itself.

The risks the FDA lists are:

  • Injury to the facial nerve. I knew about this one. My audiologists told me that they take a CAT Scan for this purpose. They want to know if you have any abnormal facial nerves and they want to know where they are. This way, you know your own unique personal risks before you go into surgery as the doctors will sit down and discuss them with you. So they already know where the nerves are. Not only that but they will monitor them during surgery. I think because of this, there is probably less and less of a risk of this actually happening, particularly if you have a good doctor and good genes.
  • Meningitis. I don’t think I’m at risk for this. It sounds like it’s mostly in children up to five years of age. I couldn’t find the exact years, just studies done on that age group. So I don’t know if anyone older has gotten meningitis as a result. But basically if you give the kid a vaccine before surgery, and monitor for the symptoms of meningitis then it should be fine. But then again, parents should be doing these things for their children anyways (hearing or deaf!). I found a study done in the United States on the risk factors. (see below). The number of cases in Clarion users (and two deaths) in this case (of 18,000 surgeries of 60,000 total out there) was a concern among professionals. It was found that the higher risk was because of the “positioner” part of the implant – a positioner is meant to keep the electrodes in place and position them during surgery. The Clairon with the positioner has since been voluntarily recalled and is no longer made. The FDA did not recommend re-implanting children who already had these implants. Remember that the below numbers are from 2002 and are a bit old. There has been another study done in 2004 using the same people from a 2002 study – I’m not sure if the 2002 study involved in this study is the same one that I’ve been talking about. They found that the individuals who had the positioners even two years after the study were at a greater risk of Meningitis than the rest of the population. Remember that the numbers below are from the 2002 study in the first link I posted. Mel-El doesn’t have a risk in the United States, because not many doctors will recommend it (this is my theory).
    • Advanced Bionics ‘Clarion’-8 cases of 7,271 implant
    • Cochlear Corporation ‘Nucleus’-14 cases of 16,617 implants
    • MedEl Corporation ‘Combi 40+’-0 cases
  • Cerebrospinal Fluid Leakage. The FDA Web site said this was the result of a hole in the inner ear or another hole in the covering of the brain as a result of the surgical procedure. Get a good doctor. I doubt this would happen.
  • Perilymph Fluid Leak. The perilymph is the fluid in the inner ear. I believe it is partly responsible for balance. The FDA said it may leak as a result of the hole they have to make to insert the electrodes. From what it sounded like, my audiologist said that the surgeon will fill this hole with muscle tissue and then your body will heal itself back up. So again, get a good surgeon.
  • Infection of the Skin Wound. Keep it clean, follow the doc’s orders and this shouldn’t happen. If it does you’ll go back to the doc and he/she will probably fix it.
  • Blood or Fluid Collection. Again this is probably something that the doc can fix.
  • Attacks of Dizziness or Vertigo. From what I’ve seen, this will go away as you heal. You just might have to take some pain killers or something. Again, talk to the doc.
  • Tinnitus. This is the one I’m worried about. Some people report more tinnitus. I don’t think there’s a way to fix it, unless you take some medicine. But it’s something that may be a part of your life from then on.
  • Taste Disturbances. Usually these are temporary (that’s what my audiologist made it sound like). I’ve seen articles about how sometimes you can lose taste in half of the taste buds in your tongue. Talk to the doc if you experience this, of course.
  • Numbness. Just like with any cut, scrap, surgery, etc. etc. It’ll be swollen. Ask your doctor when the numbness should go away.
  • Reparative Granuloma. This is inflammation that happens if the body rejects the implant. I’ve heard of docs taking implants out as a result of a malfunction, so I imagine they can take it out if your body rejects it. I have yet to hear about this occurring to anyone. Titanium is well suited for biological things, and your body is not likely to reject it.

So my conclusion so far is that no one has died from the surgery. The only thing a person may die of is Meningitis. I’ll let you know if that is not the case. Also, the surgery is pretty low risk. For the most part, complications can be corrected.

**Again, I am not a medical person. This is why in most every risk I list here, I recommend that you talk to your doctor. So even if I say it may be temporary, I don’t want you waiting for it to go away. Listen to your doctor and talk to your doctor about both the risks before surgery and if you’re experiencing them after surgery. I have found that it’s good to have an idea of what the risks are so you can have more questions ready for your doctor. That is my purpose of posting this list in my blog.

Myths About Cochlear Implants

I thought I would make a list of things I once thought, but turned out not to be true about cochlear implants. A couple of them are also what I’ve observed from other people’s perceptions.

1. The string of electrodes destroys the remainder of the hairs(cilia) in the cochlea. FALSE! Technology has evolved (starting a good while ago) to where the electrodes are flexible and can “hug” the cochlea. Before it was “stiffer” and when the surgeon inserted it, it would hit against the sides of the cochlea and thus destroying the hairs.

2. The internal piece erodes later in life. FALSE! The internal component is made with titanium, which does not corrode.

3. You can’t get an MRI with the implant without taking the internal piece out. FALSE and TRUE. I’m not sure what all of the companies do, but I know for a Cochlear CI, the magnet aspect is easy to remove and can be separated from the rest of the internal implant. So if you needed a MRI, they would just simply make a slit in your skin and pull out the magnet (this is how I understood it). There are also other types of machines available that does not do the same thing as a MRI, but can find out the same types of information. For example, a CAT scan involves taking a jug of iodine or another contrast material (which is pretty gross by the way!) and a machine takes “sliced” x-rays of your body.

4. You can’t go scuba diving. FALSE and TRUE. I have been told that you can engage in “recreational” scuba diving – at least with Cochlear (it’s best to talk to your audi for the specifics – they can tell you the maximum distance you can go underwater), but if you’re one of those people who goes looking for ship wrecks, then this might not be for you.

5. You can hear perfectly from the moment you’re activated. FALSE. For the most part, people report hearing “bells” or “Mickey Mouse” (if they’re lucky). It may take a month or two or three to start really understanding speech. People often have to engage in therapy such as listening to audio books and following along in the book itself. The audi will usually send “homework” home with the recently-activated implantee. Remember, you haven’t used that part of the brain in years, if at all, it takes awhile for it to adapt. The human brain is a wonderful thing in that it can adapt to things so well, no matter what age. Now age is a factor, when you’re a child, you’re neurons are constantly changing to fit your needs. But later in life, it may take longer for them to “learn” something. That’s why it’s good to practice. This can be applied with hearing aids and ASL too.

6. Cochlear Implants cure deafness. FALSE. It’s a COMMUNICATION TOOL, just like hearing aids, just like ASL. I don’t even think that a person who has one can have perfect hearing (although I could be wrong). I was told that I may hear at the 30 to 40 db range if I get one. A 20 db to 0 db is a normal range. At the end of the day, when someone takes it off to go to sleep at night, they are deaf.

I think this rumor is probably one of the most damaging rumors out there. What if you’re in an emergency and you’ve lost your cochlear implant? How will you communicate with people? How will you hear the fire alarm at night? How will your child (with a cochlear implant) get out of the house in time? Those are some things that people with cochlear implants need to ask themselves. It’s not something to be taken for granted. I’m in New Orleans and a lot of people talk about those folks that didn’t have hearing aid batteries or cochlear implant batteries as a result of the hurricanes. Organizations were donating these things to evacuees. But imagine if you were someone in a shelter and you didn’t have a place to recharge your batteries and people were saying over a PA system “If you are deaf, come to the front.” (I’ve heard that same story over and over again, it took people who knew sign language or who knew how to communicate with people with hearing loss to go through the shelter to get to these people – they would hold up signs – and these people didn’t have access to these shelters right away) You’re not going to hear that. It’s always good to have that emergency plan.

** a side note, like my disclaimer says, I am not a medical person. It’s always best to ask your doctor/audi about these things. I’m publishing this as a list of things I’ve come to understand in this process of researching cochlear implants.

HAs, CIs and the Phone

I have found that it’s incredibly difficult to match hearing aids with phones. I have had luck with them until my last cell phone. Before it was strictly Samsung cell phones and 900 megahertz cordless phones, but then I couldn’t find a Samsung phone or any cell phone that would work with my hearing aid. So I finally settled on a Blackberry and used speakerphone to talk to people. I avoided talking on the phone at all costs.

Today I went to Cingular… I mean, AT&T. I wanted to do a quick check with their phones. The last time I went, I couldn’t hear on any of their phones with my hearing aid on T-Coil. I went through one after another, trying to find the phone for me. I gave up because I felt bad, I’m sure the people working there may have been a wee bit annoyed with me for taking home each phone on stock (even though they were pretty nice!). But I settled and got one I couldn’t hear on. Well I walked in today and the VERY first phone I tried came through loud and clear as a bell. I couldn’t believe it. I was actually a little annoyed that a lady working there came and interrupted my perfect phone call. But I walked around to other phones and tried them to make sure my ears weren’t deceiving me. They weren’t. After a second check after trying other static-y phones, I confirmed that this one was absolutely static-less and I was doing somersaults. Unfortunately, I am not up for an upgrade for another five months. Ugh. The upgrade price at the local store was $99.99 and the regular price is $169.99. The regular price isn’t too bad for the ability to have a-more-private conversation, so my husband and I are considering it. I have to talk to Cingular…ahem, AT&T tomorrow and see if I can get a second line on my plan or something and be paying the same I do now for voice on my Blackberry. Or I may switch everything, but I would really miss my ability to check e-mails so easily on my Blackberry. My various subscriptions to e-mail lists keep me company during boring times of my life.

Now the other problem is the fact that I may be getting a cochlear implant. So tonight I have been researching if it would work with a Cochlear CI. The Motorola v3xx has a T3 and M3 hearing aid compatibility – this is the phone that came through as clear as a bell. I am asking my Cochlear buddy which the Freedom works with. I’ll let you know!

The Motorola V3XX in gold:

Motorola V3XX in gold

Kaci the Koala Bear Gets an Implant

I saw somewhere that kids get these when they go in for cochlear implant surgery (if the cochlear implant is from Cochlear Americas). I thought this was adorable! I asked my new buddy at Cochlear if I could get one too. He gave me the link for this one – it’s $30.00. It may be that everyone has to buy it. But I thought I would post. 🙂

Kaci the Koala Bear