Cochlear implant update

@pennyr Thank you for sharing your experience. Glad you have adapted to the ReSound aid. I will try again in the coming year. My audiologist was not surprised that I preferred the Widex aid. The reliability and success patients have had with Widex is a standard.

What they've done with the N8 and the rechargeable ReSound aid you likely have, is include Auracast technology. It takes up space and at this point in time has no use since Auracast isn't available yet, and will have to be installed in locations where we want to hear when it is. I wonder how much that will cost those facilities??? According to valid sources that is going to take several years.

Meanwhile, hearing loops, FM and Infrared systems are installed in thousands of venues and can be used either with receivers or telecoils in our personal hearing devices. ReSound and Cochlear tell us we can live without telecoils because we can use their Mini mic 2+ product that is equipped with the telecoil feature. That is true, however the mini mic must be charged and with you at all times if you're going to use it that way. How frustrating it would be to go out for dinner where we used that mini mic prior to a play at a performing arts center where it has to serve as our telecoil transmitter and run out of juice in the middle of the performance?

I actually purchased a second mini mic for my N6 processor when they became available so I could always have one charged. The earlier CI processor models all had telecoils so this intermediary product wasn't needed when telecoils could be used.

The big issue, as you pointed out, is size of the product one has to wear to hear well. The stigma that pushes the idea that hearing devices should not be seen has driven this concept. Thus, we are seeing smaller products with less potential.

I look forward to Auracast being available someday. Meanwhile, I'm extremely pleased that our local performing arts center, most worship centers in our area, and educational facilities, meeting rooms, etc. have installed hearing loops that my telecoil equipped devices work with. The result is clear understandable speech from the state, pulpit or other source.

Cochlear implants and today's quality hearing aids are wonderful. Why is there such a push to hide what helps us?

I am a hearing aid user for less than two years, so really a “newbie”. I have hyperacusis and so using my aids is tricky, and less effective than I had hoped.
It was surprising (and silly) to me that so much conversation went into which aid was less visible. I freely admit I am a vain person. I like to look as good as I can, but this is ridiculous.
I told the Audiologist that I did not care what was most visible, I wanted what was most effective.
He said “Oh yes, you CARE.”
So foolish.

I agree absolutely! I have heard of people being reluctant to get a Cochlear Implant because it will show. Mine doesn't show much but I would be delighted it it did. On a couple of occasions I've been able to talk to people about it and the difference between a CI and a HA. The only thing I wanted was to be able to hear again! If I had something sitting on my head and behind my ear, so what! I'm sorry your aids aren't being as helpful as you hoped.

Thank you for this. I also do not care about the appearance of my HAs. My hearing is now so bad that I am considering a CI. My audiologist has not mentioned it. Where do I start?

Charlaine,

I was in your position 6 months ago. I had experienced what I perceived as significant reduction in ability to recognize words in my left ear. I got my annual audiogram from my audiologist and it showed word recognition scores in both ears that were below the threshold for qualifying for a CI. I decided I wanted to pursue it as my friends and especially my family had grown frustrated with my hearing, or more specifically my understanding. I hear speech but don't recognize majority of the words in my left ear.

The Audiologist will then have to do additional testing (2 hours worth) to justify the loss for insurance purposes. If your audiologist does not have experience fitting and working with people with CI's, then you need to go to a larger practice or a research-type hospital. I went to Univ., of Penn Audiology where they do CI surgery weekly. I also could have gone to Jefferson Hospital in Philly or driven down to Baltimore for the best - Johns Hopkins.

If you live in a rural area, I would doubt your Audiologist has the experience and you might have to drive a distance, but it will be worth it. I have a surgery date lined up in August and am spending my time this month researching the 3 CI brands (Advanced Bionics, Cochlear Americas, Med-El) to decide which one I want to go with. I've also been talking to many of my friends at HLAA who have had CI's for years to learn what happens after the surgery, as the rehabilitation period after activation off your CI is very important to having the CI give you the best results in a quicker timeframe. I have heard of people getting to 90% word recognition in the CI ear within 3 months, and some it took almost a year.

Good luck with your decision. Let us know where you are located and maybe someone on this forum knows a good hospital or practice.

Mike in PA

Thank you! Great information. I live in Minneapolis and I will explore CI options here - including possibly Mayo Clinic.

I agree with everything Mike has said. I had surgery in December and it's been fantastic. I am at over 90% at six months and was nearly there at three. You need to put in the work to get the most out of it. I think looking for a hospital is the best option. Find a specialist who will refer you for testing and they have audiologists at the hospital making everything seamless. My surgery, four audiologist appointments and follow up with surgeon were all set up within minutes of knowing I qualified for the CI. They also dealt with all the insurance stuff, meaning I literally just turned up. I live in Lawrence KS and my surgery was done at the University of Kansas Medical Centre. I also wrote a blog which is on Facebook. It has a lot of background to my hearing loss (short version, Ménière's disease) but also a lot on the operation, recovery and rehab. The link is https://www.facebook.com/profile.php?id=61554372147542

Charlaine,
You can't go wrong with going to Mayo for an CI evaluation. Also if you want to talk in person to people that have made the decision and are wearing CI's, there is a large HLAA Chapter in Twin Cities and if you contact them they would be happy to talk to you.

Also, I have joined Zoom forums with Advanced Bionics and Cochlear Americas. They each have them at least one night a month in several regions of the country. I've learned a lot from listening and asking questions of people like me that are considering getting a CI, but also there are mentors on the Zoom who have already been through the process that you can talk to and ask their experiences. I have found them to be very helpful in making my decision. If you send me your email I can give you the email of the representative that set up and moderated the Zoom calls that I attended.
Mike

@charlaine You are fortunate to live in an area where there is an HLAA chapter as Mike mentioned. I hope you connect with them as it really helps to talk to people who understand what you are going through. You can get contact information on the national HLAA website under chapters. http://www.hearingloss.org

The University of Minnesota has a CI program. Of course, Mayo is in MN too. It is important to consult with an audiologist who is informed about CIs or is affiliated with a CI center.

I'm sad to say I have two friends who have had audiologists tell them they are 'not ready' for a CI. Both of those friends are borderline, and in their late 70s. They struggle socially and are starting to withdraw from things they've always enjoyed. Both have been using hearing aids for years. I mention this only because there seems to be a disconnect among some audiologists when it's time to recommend going the CI route. Perhaps they don't want to lose a long time patient. This, in spite of the reality that candidacy for CIs has changed considerably in the last two years to allow more people to qualify. Getting tested at a CI center, and consulting with experts in this area makes sense.

Do keep us posted.

I am so grateful for this discussion. It has prompted me to take action and make an appointment with a CI specialist Dr here - Dr. Christopher Hilton. It will be September before I can get in so that gives me time to continue to research. One question that I do have relates to the rehab after the surgery. Can some one give me idea of how that plays out? I am out of Minnesota for a week or two almost every month, especially during winter.