Thursday, May 29, 2008

The Dilemma!.... Solved!

The more I read on the differences between the Nucleus Freedom and the Harmony, the more I truly realized that even though the professionals say, "It doesn't really matter which one you pick," that it does to me. It really really does, because not only am I trusting my ear to a company, but I am also trusting in the fact they'll continue to develop new technologies that will be fully compatible with my implant now, instead of introducing new implants that will leave me in the dust.

So, I frantically fired away a series of emails to the patient care coordinator, telling her I really wasn't sure and needed to see the processors again and discuss it with the audiologist. I promised it would only take 10 minutes if that was all they could spare. Jenny set me up for 3:30, cheerfully. I was thrilled- a same day appointment so that this didn't have to weigh on my mind and confuse me any further.

I had stated that one of my main desires is to be able to listen to music, and not have to deal with a bunch of wires and cables. I found out this morning (which led to some of my confusion over which company to choose) that the Nucleus Freedom allows you to open up the back of the processor (the thing that you wear on your ear) and simply plug in your iPod or music player. No swapping earhooks or whatever. But I wouldn't let that be the only factor, in my decision.

HOWEVER, the audiologist (Tina) explained how it would work with BOTH companies and some of the comments left on this post were REALLY helpful, because I had some idea of how things could work. I wrote down on the bright yellow pad, "I heard that you could hook an ipod up to the Harmony but still keep noise of the environment around or turn it on and off, so that I don't have to swap earhooks. Is this true??" Tina looked thoughtful for a moment and then said, "Absolutely. Yes. You actually just can direct connect the cord to the ipod" and showed me. It wasn't as complicated as it had sounded upon reading it.

So, given the fact I really dislike the Freedom's cord/headpiece, I happily kept in mind the many great recommendations and tips left on this topic by people eager to help and people that had very helpful and valid points. Thank you all!!!

I also rethought the fact about the MRI. I won't be getting many MRIs hopefully, but Tina and her intern VERY helpfully informed me that getting the magnet removed isn't a big surgery. They just cut through muscle and take it out, simple!

I feel so much better about this and have been able to completely answer all my questions as well as revise the post that was here earlier. I had been confused about which was "better." So all in all, the dilemma is... SOLVED!

I am getting an Advanced Bionics cochlear implant, the Harmony make and with a sienna-colored BTE (earpiece). It also turns out that they have a TON of caps and colors and they said for me to just remind them and they'll give me those!! So I'll be fashionable, haha. I think I'll be rocking the metallic blue cap most of the time though, as I just love the color blue.

Thanks again to everyone who helped! Also, I'm really getting excited. I picked up a copy of the book Rebuilt by Michael Clorost, and so far am almost done with the book. It is both intriguing and sad, but immensely helpful in realizing some of what to expect.

9 comments:

Abbie said...

Hi Tasha,

Marketing strategies are the devil sometimes and some of what you learned is inaccurate. I have a hard time believing that Cochlear has a 1 in a 1,000 failure rate. Please take a look at this unbiased website, the FDA MAUDE Database. This is a database maintained by the FDA that list all the reports of adverse events such as malfunctions and failures with medical devices.

If you type in the Brand Name field, Nucleus and the in the Manufacturer field, Cochlear and hit search (I kept the date the same, feel free to change it though!) You will see that Cochlear has had 106 reports of their implants malfunctioning or failing just in the past four months.

If you go back to the search form, and type in HiRes 90k in the brand name field and hit search. You will see only 28 records in the past four months. I left the manufacturer field blank because Advanced Bionics split from a company last year. That is a huge margin between the two brands latest implants.

Cochlear is not the only processor that has two microphones. Cochlear has a microphone setup like a hearing aid does, a directional and omni-directional microphone. AB has one microphone in the processor and another microphone at the of the T-Mic ear hook which is only available with AB. It uses the natural shape of the ear to collect sounds and it is absolutely fantastic in noise. Most people that have the Harmony with T-Mic prefer to use only the T-Mic because of the clarity that it gives for speech and in noise. It weeds out the unnecessary noise that we do not need to hear.

I've personally been in contact with three people that have been implanted bilaterally with one Cochlear and Advanced Bionics. Why someone would go with two different companies is beyond me but I was happy that I had the comparison available to me. Naturally, I asked them which one do they hear better with? All three told me Advanced Bionics. Please keep in mind that I do not know their hearing history or whether that the AB device was implanted in a good or bad ear. I do know that they were using older models of AB processor, the Clarion-2 and Auria processor. I wear the Harmony processor that gets rave reviews from Auria users that have upgraded.

As far as the batteries go, it is anyone games what you feel more comfortable with. I personally would find it a huge hassle paying for batteries and waiting for a check from the insurance. I gotten four batteries with my processor and they each last me two days long.

As far as the four programs go, I find it redundant because most of the CI users after they learn how to hear with the CI, tend to settle down on one program. I have a program for normal, telephone and music but I hardly ever switch because I hear the music and telephone just fine with my normal program. I have to agree it might be helpful in the beginning trying to use play around with different settings but after six months, you might find yourself just sticking to one.

I hope this helps you clear up some discrepancies in what you learned because this is a big choice you are making and you deserve to be given only factual information.

Sorry it was so long :)

The Royers said...

Hi Tasha, I lost my breath reading Abbie's reply, nonetheless it was purely on-the-mark.

A few other things: AB has the widest IDR (input dynamic range) in the industry -- this means you can hear the widest variety of sounds WITHOUT having to "switch" programs or make adjustments on your processor. The technology is fully embedded within the program your audiologist maps you with.

RE:The rechargeable batteries with AB -- there are two sizes -- powercel plus and slim. I can go 18 hours on one powercel plus charge. On my slim I can go 9 hours.

While the direct-connect is a separate ear-piece if you prefer to listen to music via an iPod or portable music device, you can also ask that your BTE microphone remain on so that you can listen to music AND hear people around you should you need to (for example, on my daily commute I listen to an iPod. If I need to speak with someone, I simply pause my music and communicate as needed...)

I know that selecting a device is challenging! My doctor told me "they're all the same" as well; it was up to me to research the difference.

Cheers,
Mike

Kim said...

Hi Tasha

I'm an Advanced Bionics CI user for 14 years now. Over the years I ahve seen the competition heat up. Advanced Bionics has more patents on cochlear implant technology then all the other companies combined! They continue to press on for new technology and better ways to help us hear.

Advanced Bionics has brought lots of great technology to the market through the years and I continue to be impressed with my device choice.

The T-Mic is incredible. Using the ear as it is designed to capture sounds and allow us to hear. Your audiologist can help you in making so many choices in regards to utilizing the microphones on the BTE.

But it doesn't stop there. HiRes 120 Fidelity speech strategy is awesome. The research has shown an increasment in music appreciation and speech. It's here now and awesome new technology

There are a lot of us more than willing to help if you have any questions or concerns.

Kim

Evelyn said...

Hi Tasha,

I am using this as a test to see if my comments come through. I did send you a long reply and it disappeared.

Evelyn

Evelyn said...

O.K. Tasha,

Now I can send you my post! I read your post and also Abbie's, Mike's, and Kim's. They have said everything so well and I want to add a few other comments.

First of all, please understand that I want you to hear the very best possible you can. Having done intense research myself as to what brand to choose, and having technical people explain all the amazing research Advanced Bionics has created compared to the other brands, I want to share some thoughts with you.

This morning I was at the hospital because a "new" friend of mine was getting a cochlear implant. She is most fortunate and had the same CI surgeon I had and will also have the audiologist I have so I knew she would be in excellent hands. When my surgeon saw me she said she heard how well I am doing and was very happy. She said that choosing Advanced Bionics was the best decision I made and that my new friend Terri made. I agree with her completely. She keeps up on the success rate of all her patients.

AB is the only company that has a t-mic as has already been mentioned. Please don't take this lightly because a t-mic will open the world of sound to you like you have never heard before. AB also has the option of using a microphone plus you can have a mix of using the t-mic and microphone. Phenominal hearing!

I was ask to go to your university, the University of Washington, in February for a two day intense study to see how I hear music with my AB CI. While waiting for the Ph.D's to arrive at Boedel Hall I picked up a scientific magazine. There was an independent study made using all three cochlear implant companies regarding the performance of patients and the effects of IDR (input dynamic range)which means "how much sound you will hear". AB is the only company with an IDR up to 80dB. Cochlear and MedEl are very much lower. Do you want to be limited on how much range you will hear? When you hear music do you want to hear it all so it sounds rich and full? and speech is the same, rich and full?

Disposable batteries are more expensive and not fun to have to tote around and wonder when your battery will run out. With AB's rechargeable batteries you are in control knowing how long the battery will last. The slim ones will last a full day and the larger ones 24 hours. When I got my first CI I got four batteries so I always have backups available and a small leather pouch provided by AB to carry them in. Now you can't just throw batteries in the garbage but they must be taken someplace special because of the hazard in landfills at least in California.

I saw my audiologist last Friday for a mapping. She said AB has the easiest method of mapping processors and an AB rep is always available if any questions arise whether on the phone or in person. She reminded me once again about the "forward thinking" technology AB patented. In other words, what is inside my head will stay there and capable of handling any new processor that would be developed and worn externally in the future.

Tahsa, I truly want you to hear the very best you can. What is implanted inside your head will be with you the rest of your life and it is vital you make the right decision.

In doing all my research as to which brand to choose I met and spent time with people who had Cochlear Corporations and also with Advanced Bionics. After months of seeing how their implants performed there was no doubt that AB was far superior. I remember going to lunch several times with five other Cochlear Corporation people and they all struggled to hear in the noisy environment. That was prior to my first implant. I have since that time gone out to lunch with the same group and I am able to understand all of them. I have been fortunate to meet two doctors who have implants and they chose AB....I ask them why and they said all the things that Abbie, Mike, Kim, and I have mentioned. I got to see and hear the results and had no doubt all of them were an excellent judge of brands.

Music is far superior with AB's Harmony than anything on the market. If you enjoy music you can use AB's t-mic and headphones - just like normal people do! You have the option of using direct connect and that is so easy to use. Using a phone and holding it normally and using 100% t-mic is phenominal. I had not used a phone in about ten years and I do now with my CI. I can use any normal phone and have my very own cell phone!

I know this is a big decision Tasha and I hope your choice will allow you the very best hearing possible. There is no much ahead for you and I know that being able to hear will add to your enjoyment of life. My life has changed now that I can hear and I will be forever thankful.

Evelyn

Tom Hannon said...

Well Tasha, if you haven’t met them before, you have just been introduced to just a small part of the “A” Team of Advanced Bionics users! And I, who am also an Advanced Bionics Harmony Cochlear Implant System user, cannot add a thing to what they have posted, except to say that we have all been exactly where you are and it is no easy task you are facing!

Cyborg Queen said...

I was reading the comments, and realized that there wasn't one Freedom user. :-)

I am implanted with two Freedom implants, and CI processors.

While there *are* differences between Harmony and Freedom processors. TO me, they BOTH have Pros and Cons.

Let me first correct you that Freedom DOES have rechargeable batteries. That's what makes it different than AB. Suppose if your rechargeable battery dies, what will you do? You can pick up regular hearing aid batteries and use it temporarily. Or you can order CI batteries, and if you have Medicare - your insurance will pay for it. So, Freedom has both CI batteries, and rechargeable batteries.

I don't know why people say that AB has the highest IDR, but Freedom can go to 80 as well...however, most people average 35 to 45. So there's really no reason why it should go THAT high. It's all depending on individuals. I personally have it on 32...if it was any bigger than 45, it would be waaaaay too much. :-)

The T-mic on AB sounds wonderful, however, I can't say if it's better or whatever because I haven't experienced it, but it does sound very cool.

Another thing I want to correct you on...is Freedom has three microphones, not two. Yes, two is for omni directional, but there is three.

I agree that some people think 4 programs for a processor is too much, but if you really think about it you could use it for any situation. For example:
Program one - Everyday
Program two - Music (it can be set to have Sensitivity all the way down to 0 to help block out background noise) - with different DR
Program Three - Resturants, noisy environment - you can use this for one of the SmartSounds Programs (something that AB doesn't have, but it can be similar) such as Beam, Whisper, ADRO, etc.
Program Four - Phone - you can have this set on T coil only.

So, if you really think about it, having 4 programs can help you reduce the headache of always adjusting sensitivity and volume. AB has 3...so to me, it doesn't really make a BIG difference.
I use P1 for quiet, P2 for Everyday, P3 for Beam (resturants, mall, etc), P4 Music.

The ONE reason why I picked Cochlear is because my surgeon AND audiologist ONLY deals with Cochlear. I loved them too much to stray, and find AB Audiologist. So I'm happy with my choices.

Music is very important to me as well - and It sounds exactly the same, and if not, better than I remember than when I wore my hearing aids. However, there are still some tweaking that needs to be done...music is the hardest thing.

And remember, between AB and Cochlear, there will always be competitions, and always have improvements with the processors. ALL of us will be happy with your choice! :-) I wish you best of luck!

suddensilence said...

Hi Tasha!

I left a comment on your earlier post and it disappeared (whooops!) so I thought I'd see if this one goes through. :-)

I'm in the same boat you are, making the decision -- it's nerve-wracking, isn't it?! I waffled back and forth for a while as well. In the end I decided to go with Advanced Bionics.

I wrote to an audiologist with AB about the backwards compatibility issue and she said, in part, "Let me address your question about upgradeability. This truly is one of the cornerstones of the AB technology in that it is upgradeable internally AND externally without the need for more surgery. Currently we are the only CI manufacturer that can offer both. The likelihood that your device will be able to be upgraded over time is definite." Pretty cool! It definitely eased my worries.

Ironically, my husband will also be getting evaluated to see if he qualifies for a CI (after I'm done with my surgery/activation). He's a veteran so he has to go to one specific VA hospital (in Michigan), since the one here in Illinois doesn't do CI's. The only brand they use is Cochlear so if he does qualify and gets a CI, he'll have a Freedom. We'll be a household with one of each CI brand! :-) LOL

Sending you lots of good thoughts as your surgery date approaches,

Wendi

Tom Hannon said...

Tasha: What you are going through will be the exact same process many others will go through on their own hearing journeys! But you, by good fortune, have an uncanny gift, a wonderful ability to put your thoughts to paper, as it were. What you have described in exceptional detail can and will help other CI candidates long after you get your bionic hearing! So may I suggest posting these same blog thoughts, etc. over on the HearingJourney forum. You can and will make a difference, and some day what you post will help another!