SayWhatClub

Which Cochlear Implant is Best?

If you have recently discovered that you need a cochlear implant, you may be wondering which one is best.  How to pick a cochlear implant is one of the top questions we get at the SayWhatCub, and we understand how stressful choosing one can be.  Knowing that we will be stuck with whatever brand we choose for the next twenty or thirty years, we all hope to pick the best one. Surgeons and audiologists are rarely helpful when it comes to choosing a processor.  There are no independent studies indicating which cochlear implant is best. Unless you have a background in electrical engineering, understanding how they work can be confusing. Most surgeons have never tried out the cochlear implants they place in their patient’s heads.  Few people with cochlear implants have experienced more than one brand.  Comparing brands seems all but impossible.

In this post we’ve interviewed three of our SayWhatClub members.  We’ve asked each of them the same questions about their cochlear implants. Ilene wears two Advanced Bionics Marvel processors.  Ann Marie wears a Med-El Sonnet with a hearing aid, and Pat wears two Cochlear Americas Kansos.  We hope this post will enlighten you and help you make the best choice that is right for you.  People with cochlear implants tend to talk in technical jargon related to their devices.  For clarity, I have written notes in italics.

When did you get your first cochlear implant?

Ilene (Advanced Bionics) I Got my first CI in January  2020 after a decade of resisting the notion.

Ann Marie (Med-El) October 2014.

Pat (Cochlear Americas) I got my first one in 2016 and my second one in 2021.

Do you have one or two?  Why?

Ilene (Advanced Bionics) I found the first one to be such an improvement that I started thinking about doing the other ear about 4 months in and had the surgery in December 2020.

Ann Marie (Med-El) I have one. I hear well with one and don’t feel the need to go bilateral. I have a little bit of low pitch hearing in my other ear and use a hearing aid just so I have some sound on that side.

Pat (Cochlear Americas) I have two. I stopped wearing a hearing aid in my unimplanted ear, because it seemed like it actually worsened the clarity of my hearing. My doctor told me that was a sign to get the second one. I wanted to hear in stereo again.

Why did you pick the brand that you went with?

Ilene (Advanced Bionics)  I spent too much time agonizing on which brand to choose and ultimately went with Advanced Bionics.  I felt their internal device is well suited for advances in the future.

Ann Marie (Med-El) MED-EL. The reasons I chose it in 2014 were at that time they were the only company that had an off-the-ear processor and the only company who made implants that were MRI compatible and didn’t require magnet removal. I also thought their longer electrodes seemed like a good idea. (Note:  All brands currently offer MRI compatibility on their newer electrode arrays.)

Pat (Cochlear Americas) I chose Cochlear America for several reasons. My accessories that went with my Resound hearing aids that I already owned like TV streamer and Mini Mic would work with them. Also at the time they were the only company that had direct streaming to your phone. I hated carrying a remote. I talked to several people with different brands and it at least seemed that the Cochlear users were the most satisfied. I was also impressed with their customer service.

How long did it take to get used to?

Ilene (Advanced Bionics) I did a lot of training the first month and speech normalized quickly by the end of it.

Ann Marie (Med-El) Not long.  I understood speech when I was activated but it took about 3 months for the robotic cartoonish voices to sound more normal.

Pat (Cochlear Americas) I was understanding language within a day and things began to sound more normal after a few weeks. I did the work and wore the processor all day. At 2 months I had 82% word recognition. It was pretty quick for me.

How well can you hear with it compared to how you heard with hearing aids?

Ilene (Advanced Bionics) There is no comparison between my hearing aid hearing and my CI hearing.  I struggled for years with power aids. Now I hear  pretty naturally.  I don’t have to think much about it.

Ann Marie (Med-El) By the time I decided to get tested for a CI, understanding speech with hearing aids had become very difficult. With my CI I hear and understand well in most situations.

Pat (Cochlear Americas) Night and day difference!  My last testing had me at 98% word recognition. I could basically not understand anything with my hearing aids unless I was lip reading at the same time.

Are you able to able to converse in noise, such as at noisy family gatherings or at restaurants?

Ilene (Advanced Bionics) It is much easier to hear in noise now, but not perfect.  I use my old coping skills of speechreading  when needed.

Ann Marie (Med-El) Yes.

Pat (Cochlear Americas) I do pretty well and it is getting better. I like using forward focus in these situations. (Forward Focus is a program on Cochlear processors that cuts background noise and focuses on sound in front.)

Can you watch TV without captions?

Ilene (Advanced Bionics) I can watch without captions but like to use them anyway.

Ann Marie (Med-El) In the first years of having my CI I relied on the captions.  As my brain continued to adapt over the years, I still keep the captions turned on but I understand a lot of what is being said so I’m not totally dependent on them.

Pat (Cochlear Americas) Yes, though I keep them on most of the time out of habit. I adore my TV streamer.

Can you hear on the phone?

Ilene (Advanced Bionics) I stream calls directly to my processors from my cell phone.  I also use a special phone program for landlines at work.  I can hear very well.

Ann Marie (Med-El) It took a few years for this to happen but I would say most of the time I understand phone conversations.  I do like having a CaptionCall landline and InnoCaption on my cell just in case I need them.

Pat (Cochlear Americas) Yes!  It took me a long time after implantation to get over my phone phobia with hearing aids but now I don’t even think twice about calling someone.

How does hearing with a CI compare to normal hearing, if you previously had normal hearing?

Ilene (Advanced Bionics) I have had declining hearing loss since I was eight years old.  I lost all high frequency sounds first. I now enjoy birds singing.  Speech and music sound very natural to me now.

Ann Marie (Med-El) I have a progressive hearing loss that began in my late 30’s.  My CI doesn’t give me back what I had before but it’s close enough.  I always say it’s my new “normal”.

Pat (Cochlear Americas) It seems pretty comparable to me. I don’t notice a difference. Music might still be a little off, but I love understanding lyrics now.

Is your cochlear implant company supportive when you have questions or a problem with your device?

Ilene (Advanced Bionics) My Advanced Bionics representative was very helpful during the selection process.  She came to my home and showed me all the accessories and how to use them.  Advanced Bionics has email, phone and chat support.  They are very responsive.

Ann Marie (Med-El) Thankfully in the nine years I’ve had my CI I haven’t experienced any problems with my devices. In the few times I’ve had to contact customer service they have been helpful.

Pat (Cochlear Americas) Yes. They have promptly taken care of my few issues.

Did your device come with a warranty?

Ilene (Advanced Bionics) The processor has a five year warranty, that I think is standard for the industry.  Most accessories have a one year warranty.

Ann Marie (Med-El) Yes.

Pat (Cochlear Americas) Yes.

What are some of the things you like about your cochlear implants?

Ilene (Advanced Bionics) They gave me back my hearing, I am grateful every day for the technology.

Ann Marie (Med-El) For the most part, it enables me to live my life as I did before losing my hearing.

Pat (Cochlear Americas) I love having my off the ear option. I love getting my life back to normal with pretty normal hearing. I  weirdly even love the option of silence at night, on planes, or whenever I choose.  They also rid me of my tinnitus.

Are there things about your cochlear implants that you do not like?

Ilene (Advanced Bionics) Nothing comes to mind.

Ann Marie (Med-El) I can’t think of anything I don’t like.

Pat (Cochlear Americas) I really cannot think of anything. I mean I would prefer to have natural hearing without all the equipment but this comes pretty darn close.

If you wear two, do you hear better with one ear or the other?

Ilene (Advanced Bionics) They work together like stereo speakers do.  I can hear with just one, but 2 is so much better with a full, rich sound.
Ann Marie (Med-El) I only have one.
Pat (Cochlear Americas) I always wear them together which sounds better than alone.

How easy is it to charge your device?

Ilene (Advanced Bionics) I have a spare set of batteries so I can always swap them.  The electric/USB charger is small and takes about 7 hours to fully charge a set.

Ann Marie (Med-El) Very easy.

Pat (Cochlear Americas) Super easy. My Kanso 2’s go in a charger/dryer at night and are ready to go in the morning.

Do you have different programs on your devices to accommodate different listening situations?

Ilene (Advanced Bionics) I do have different programs, but use “autosense” ninety-five percent of the time.  I also have a “speech in car” program and  a “speech in noise” program. (Autosense is a program that automatically detects the listening environment and self adjusts accordingly.)

Ann Marie (Med-El) I have a few different programs, but I always use the same program which adapts well to my listening environment.

Pat (Cochlear Americas) I have 4 programs but never change from Scan.  (This is similar to AB’s Autosense program.)

How do you change programs?

Ilene (Advanced Bionics) I can toggle through programs using the processor button, or I use the AB app on my phone.

Ann Marie (Med-El) With a remote.

Pat (Cochlear Americas) I can change on my phone app or Apple Watch where I really do everything CI related.

does your brand offer a “swimmable” option?

Ilene (Advanced Bionics) I have the waterproof battery for the Marvel processor and the older Neptune processor that is submersible.

Ann Marie (Med-El) I don’t swim but Med-El makes waterproof covers called WaterWear.

Pat (Cochlear Americas) I have the aqua kit for swimming, but never use it. Mine fell in the deep end of a pool once, and it took about ten minutes to locate. I was shocked when I put it on and it worked perfectly. I snorkel deaf.

Does your brand offer an off-ear option?

Ilene (Advanced Bionics) Advanced Bionics does not offer a totally off ear processor because they find their T-microphone that needs to be worn by the ear opening gives better results than a microphone on your head does.

Ann Marie (Med-El) Yes.

Pat (Cochlear) Yes.

Does your brand offer other extras, such as disposable battery option, Assistive Listening Device, TV streamer, swimmable protection?

Ilene (Advanced Bionics) Advanced Bionics offers a full range of accessories for different listening situations.  I use a Roger microphone to stream  entertainment  on plane trips.

Ann Marie (Med-El) My Med-El Rondo 3 has an internal rechargeable battery.  I can use either rechargeable or disposable batteries with my Sonnet.  Med-El has AudioLink which is a universal connectivity device which can be used to connect Rondo 3 to phones, tablets, TV’s and other devices. Phones calls and music can be wirelessly streamed to the Sonnet or Sonnet 2 using the Audiostream battery cover.

Pat (Cochlear) All those options. There is no disposable battery option with Kanso 2 but there is one with the Nucleus models.

Final Thoughts

One of the challenges of comparing brands is that none of us have similar hearing backgrounds or situations.  These three cochlear implant recipients were each considered late-deafened, as they all became deaf after learning to speak.  All wore hearing aids successfully before getting their cochlear implants, until hearing aids were no longer helpful. When someone wears two cochlear implants of the same brand, they may find their hearing is different on each side.  Hearing well with a CI has as much to do with the individual ear as it does with the technology.

They are all good.

All of the cochlear implant companies provide the best opportunity for hearing when hearing loss is so severe that one becomes a cochlear implant candidate.  All three of the cochlear recipients said they preferred their cochlear implants over their hearing aids, and that they heard better than they did with their hearing aids in the past. None of them wish they had chosen another brand, or had any complaints about their cochlear implants or their cochlear implant companies.  The special programming strategies for communicating in noise, on the phone, for watching TV or when in water are comparable for each brand.  Two of the brands offer completely off ear options.  Not everyone likes that option, while others are very happy with it.  All current electrode arrays are MRI compatible, but those who were implanted in the past may not have MRI compatible electrode arrays.

For more information, you may wish to look at this comparison chart at Cochlear Implant Help Online.  Be sure to check back often, because the comparison chart is updated frequently, as each company constantly strives to improve their products.

Though this is by no means an independent study, we hope this article will offer some reassurance as you begin the process of selecting a cochlear implant.  If you have more questions about wearing cochlear implants, the SayWhatClub has an active cochlear implant email listserv with several cochlear implant recipients who will be happy to answer any questions you may have.  No question is too silly.  We have all been in your shoes and know exactly what it’s like. Join here.

Yinz, Ya’ll, Eh? Say What Club Conventions by Angie Fugo

Yinz, Ya’ll, Eh?  (aka: the ‘burgh’s plural you, the South’s plural you, and Canada’s every other word!)

Hey SWC-ers!  It’s been three years since our last blog post and three years of fantastic cons to reminisce about.  So, time for a new blog and a walk thru our most recent cons of the roaring back again ‘20s…

Aug 2020 – Year of the Non-Convention gets a brief mention since yours truly & the 2020 Con Committee tried our best to cobble a Con together up until the last minute, then had everything in place for 2021.

Aug 2021 – Pittsburgh, Yinz met here (Pittsburgher hosts, me and Joe Kovac + Pat Kovac and Lorne Smith)

Our 2021 reunion convention built many bridges among us and along three sparkling rivers surrounded by green hills, inclines, and the warm, welcoming people of Pittsburgh!  And refreshing it was, after two years of a “drought” of not seeing each other because of a cancelled 2020 (I most of the year, that is).  Many made excursions to the Andy Warhol Museum, the National Aviary, and more.  And our Gateway Clipper riverboat cruise was a feasting-dinner-dancing, one-of-a-kind experience where we descended and rose again on the Ohio River’s first set of locks.  We could have kept heading West into the glorious sunset and on to the Gulf of Mexico… but alas, our lovely host city beckoned us with a gorgeous nightfall illumination-fest.  Gliding back to Mon-On-Ga-He(y!)-La’s riverbanks, twilight transformed into glistening, shimmering views of the U.S’s most colorfully lit city (I’m biased!) – or at least the only one connected by 446 works of art we call bridges.  This convention was also our last with André, our dear photographer of many cons, doing his incredible art-making of us, in digital photography.  (We love and miss you, André!)

Aug 2022 – Ya’ll met in the infamous Music City thanks to Mike and Sherri Steele and Cynthia Moynihan

Another year rolled by with planning and anticipation of our first convention in the all-night music city of Nashville, Tennessee!  What a time it was – touring a very-hearing-accessible Library, experiencing the Grand Ole Opry (backstage and front stage) and strolling into clubs and on rooftops well into the am hours.  One of these clubs, the Wild Horse Saloon (with horses on the ceiling and everywhere else in the saloon!).  Wild Horse allowed us to bring a beautiful ASL interpreter and our own amazing Julia Stepp providing real-time captioning of the music. Both were awesome hits in addition to the great music artists playing that night.  Knowing the music, but maybe or maybe not hearing it, we danced up a storm!  We also wowed the crowd by having these two there… many people besides us appreciated having synchronous song lyrics and “live-screened” ASL interpretation.

July 2023 – And all who could went any which way, plane, train, or automobile, to Vancouver, B.C., eh! (With many cross-border and international thanks to our spectacular hosts, Lorne and Joann Smith.)  This was the Say What Club’s second international convention held outside the United States.  And it too, was another fantastic convention in a cool place compared to the rest of the sizzling continent.  And of course, its share of stimulating activities – the water taxi dance, a city-wide sightseeing tour, the truly unique Beatles greatest hits show disguised as Bard on the Beach, food tours, and bakeries and sushi – oh my!  And did we mention our gorgeous Northwest Canadian scenery and friendly host hotel and city?  And while we were hoping for the Northern Lights and they failed to appear, we did manage to enjoy many of our first-ever or first post-pandemic international excursions, except that nasty little “bug” that hit us there or followed many of us home!  Thankfully, all of us cared for each other while there and made sure each made it safely home and recovered.  A convention full of memories that made their way home with us and will carry us onto next year.  Here’s to all our continued health, more new Canadian friends, and a convention next year to look forward to a little south of this same U.S./Canada border.  Eh!

The ADA and its importance to those with hearing loss

Thirty years ago, on July 26, 1990, the American with Disabilities Act (ADA) was signed into law by President George H. W. Bush. This groundbreaking legislation prohibits discrimination based on disability.

The ADA is important to me because I have a profound hearing loss. I started to lose my hearing when I was 19. Today, at 70, I am grateful for my cochlear implants which gives me close to normal hearing.

When Congress began drafting a law to define people with disabilities as a protected class, hearing loss was not mentioned, probably because it’s invisible. The only concession was for the Deaf, easily recognizable because of their use of American Sign Language (ASL). Hearing loss was finally included in the ADA thanks to the advocacy work of Rocky Stone and his newly formed organization, Self Help for the Hard of Hearing (SHHH), and Senator Tom Harkin who was a passionate advocate for it.

This inclusion is important because it affects 48 million Americans, a number projected to grow “thanks” to loud music played through headphones; returning vets exposed to heavy artillery; the aging population; and the noisy environment of cities. Hearing aids help, but they’re expensive and rarely covered by insurance, except for those covered by the Veterans Administration.

During my 35-year sales career, although I already used hearing aids, I had trouble hearing. Meetings were challenging and I struggled to hear on the phone in our noisy office. Had I only had the confidence to ask for accommodations I could have asked for CART (Communication Access Realtime Translation or live captions) for meetings, access to a vacant room for phone calls, captioned phones, and assistive listening devices.

Unfortunately, I did not. I was embarrassed, even humiliated by my hearing loss and tried to hide my hearing aids. I bluffed my way through conversations and meetings, creating misunderstandings, frustrations, and an impact on my career.

Ten years ago, I found the HLAA, and met others with hearing loss. I learned that my peers bluff if they cannot hear rather than admit they have a hearing loss. This was a life-changing insight for me as I thought I was the only one who pretended. And as I know all too well, bluffing can cause many embarrassing answers.

The HLAA, and accepting my hearing loss, have led me to start an HLAA chapter and serve as its president, become president of the international, online organization, SayWhatClub (www.saywhatclub.org). I launched a coaching
practice for those with hearing loss, helping them come to terms with their disability; also their communication partners as they are affected too. In addition, I give workshops and talks, all to educate people on hearing loss.

The ADA has had a major impact on my life, and on yours too if you choose to use it. It is not a watchdog agency. It is the law. Thanks to that law, we have accessible sidewalks, ramps, and elevators benefiting the wheelchair-bound and
others with difficulties negotiating stairs and curbs. More and more theaters and other venues provide CART and hearing loops. The ADA makes it illegal to discriminate against individuals with disabilities. You cannot be fired just because
you use a wheelchair or are hearing challenged. If your performing-arts center, conference room in city hall, or other public venue does not provide accommodations, like CART or hearing loops, you can ask for it.

Thankfully today there are a host of accommodations for hearing loss: captions on TVs, movies and smart devices as well as theaters providing CART, hearing loops in public venues integrating sound directly to the hearing aid. Telephones are hearing aid compatible. Captioned phones are free. Plus, smart phones provide a host of voice to text Apps.

There are still  shortcomings, but those shortcomings might encourage us to advocate for ourselves. As I mentioned the ADA is a law, not a watchdog agency, so we must be the watchdogs. We must ask for accommodations when needed, and the law backs us up much of the time. If we go to a public venue, it is our job to ask for accommodations, always allowing lead-time to comply. It’s not easy. You have to persevere, even in the face of rejection. But the ADA provides the legal groundwork to file complaints and take legal action.

Hearing loss doesn’t just affect your ears. It affects your self-esteem, social life, career and relationships with family, friends, and co-workers. Dealing with it requires courage and the willingness to stand up for yourself. We are fortunate to have the ADA to support us.

Pat Dobbs and the 2019 SayWhatClub Convention, Photo by Andre Binns.

Pat Dobbs, President of SayWhatClub, is the founder of Hearing Loss Evolution (www.hearinglossevolution.com), providing training and coaching services for people with hearing loss and their communication partners. Through this, she created the “Nine Guding Principles” to hlep all who suffer from hear loss. She is passionate about educating and empowering people about hearing loss and helps through work as an Educator, Speaker, and Coach. Ms. Dobbs started losing her hearing when she was 20 years old and her hearing progressively declined thereafter leading to her current status as a wearer of bilateral cochlear implants that allow her to hear close to normal. You can reach her at Pat@CoachDobbs.com.

Article is reprinted from Island Ad-Vantages; Serving Stonington, Deer Isle and Ilse au Haut, ME; August 6, 2020. Publisher & Editor: R. Nathaniel W. Barrows.