From Hearing to Deafness and Back

10/24/2024

I've recently returned from another month long trip to Spain and Portugal and went back to using my 'Spanish' phone, and old iPhone 7. Once again the problem with only streaming to one ear started, with no clue as to which ear it might be at any time. For phone calls I do better with the hearing aid if it's only streaming to one device, but I never knew which it would stream to, or even if it would. Move forward to the end of the trip and a huge delay with American Airlines. Fortunately the start of the delay was in Madrid and the AA employees there were fantastic. When we were off the plane and picking up our luggage, after already starting our taxiing to the runway, they were looking for me to explain what was going on. Unfortunately that also included making a phone call to them to verify the arrangements that had made. I explained that this was problematic for me (it would have had to be on the Spanish phone) and they arranged to email the details instead. That worked! But I realise that I need a better phone for the time I spend overseas, so now I have two good iPhones, which may be overkill, but certainly will make life easier, knowing I can call with confidence whenever I need to.

Bonus photos my village in Spain, and Sintra in Portugal.

08/31/2024

August 31st

While I was in Spain, at some point I realised that my phone was only streaming to my hearing aid. I use a different phone while I’m there that I get a cheap Spanish SIM for. I could put the Sim in my iphone 13 but don’t want to be switching from one sim to the other. I tried a couple of times to fix it but it didn’t bother me too much. I could hear phone calls well enough with just the HA and wasn’t streaming anything to watch.

When I was back home the same thing was happening when I switched back to my usual phone so over the course of a week or so, spurred on by the fact that I would rather watch and hear the Olympics with both ears, I tried everything I could think of. I restarted everything, I turned things off and turned them back on in varying sequences. I turned off the Bluetooth, shutdown the phone, turned it back on. Nothing. I could stream either with the CI or with the HA but as soon as I started to link the second device the first one just faded gently away. By now it was time to get in contact with Lindsay, the audiologist at KU. She confirmed I had tried everything and done all the right things and had one last suggestion for me. A hard reset of the phone which she swore would not delete all my data. I had never heard of this (It’s apparently like a force restart) and was still nervous about losing all my data, especially as the internet was less than reassuring about the difference between this hard reset and factory reset. However, I read enough to reassure myself, did the reset, set up the hearing aid and cochlear implant again… and, no improvement. I tried a couple of times, thought about throwing the phone across the room but called Cochlear instead. I chatted with one of their representatives who essentially had me do all the things I had already done but under her supervision. And the same. At least she was able to tell me that somehow, perhaps during a software update, my two devices had become unlinked and I would need to see my audiologist in person to get them relinked.

I made the appointment, drove an hour to KU Med Center, and an hour back for a five minute success story in the office. I’m all set up, too late for the Olympics, but just in time to go back to Spain in less than two weeks!

That is a fix that may one day be doable remotely. Soon, according to Lindsay, but no hints on what soon might be. After posting about this in a Cochlear implant group, I realise that a one hour drive to the audiologist isn’t bad. Some people drive three or more. I did look up to see if there are any Cochlear audiologists in the town I live in, but no. The Kansas City area is the closest.

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07/27/2024

July 27th

I just returned from five weeks in England and Spain involving a total of six flights, four of them relatively short (around three to four hours) and two of over seven hours. It has been an interesting experience.

Going through different types of scanners at the airport hasn’t proved a problem at all. No-one even mentioned the fact that I might have something attached to my head and I didn’t notice any changes in the processor at all.

Flying itself was a bit of a different matter. When I just had hearing aids and I used them on the plane everything was loud, but not unbearably so. Using the sound processor on the plane is horrible. On every flight I ended up turning it off and only using the hearing aid in the right ear. The background noise from the plane’s engines etc (not the sound of people) was unbearable. It was a little better if I put it on the telecoil setting. The same was true, to a slightly lesser extent inside the airports themselves. I could hear enough of the announcements – which really, I didn’t need – with just the hearing aid. The worst aspect of the whole thing was that after each flight my own voice sounded extremely odd to me. Back to nitrous oxide or the Chipmunks. It lasted a few hours, but always by the next morning was back to normal. Additionally, I ended up hearing my own voice inside my head for several hours after each flight on the hearing aid side. I had this same effect when experiencing quite dramatic altitude changes in the car – going from Granada to the village I have my house in Spain is a rise in elevation of 200 metres in a bit over an hour and the road from Granada to Baza is pretty steep in places, as it is again from Baza up to my village. It’s also odd to have my right (HA) ear popping a lot, and my left (CI) ear not doing anything. I have no idea whether this is the same for everyone. More research needed! My hearing of other people didn’t seem to be affected at all.

I have not yet managed to figure out how to use the remote microphone (mini mic) to listen to the inflight entertainment system. I didn’t try really hard because I usually prefer to read on flights anyway, but it would be worth knowing. So back to the videos for that! I think what I need to figure out is making sure it is paired properly with the sound processor. But this was another problem I had. I used an old phone while I was in Spain with a local sim card as my American T.Mobile phone which worked pretty well in Spain, pre-Brexit, barely worked at all this time. I got the HA streaming to the phone with the Spanish Sim but couldn’t get the CI to pair at all. So one was paired with my American phone and the other with the Spanish phone! It was actually OK as I was using WhatsApp to call my family and make local phone calls as needed and that streamed into my right ear, which is the one I now tend to favour for phone calls anyway.

And a funny story as well. Since I have been deaf, I have always completed the disability/ special assistance section when booking a flight. I don’t really need any additional help most of the time (except the flight last year when the plane returned to the gate and I had no idea what was going on, so had to ask), but I have learned, that at least with American, you get to board earlier, always in group 5, the first of the economy cabin boarding groups. This in turn means no fighting for overhead bin space, so I’ll take my luck where I can get it. I had just arrived at my gate in Chicago, prior to flying to Kansas City, when I heard what I thought was my name, being paged. I checked, and yes it was. This very young gate attendant then asked me if I needed a wheelchair to get me down the ramp to the plane! I pointed out that it was my ears that were the problem, not my legs or back, but thanked her for at least knowing I had a disability!

The only other thing that bothered me at all was having to wake up early for flights and not knowing if I would hear the alarm/wake up call. I don’t wear a fitbit or apple watch, so no vibrating. I do have a clock that vibrates, but it’s heavy and I didn’t want to take it with me (carry on only for five weeks!) If I’m sleeping with my HA side up, I will hear a loud alarm or phone call, but obviously if the CI side is up, nothing. I need to invest in some sort of lightweight vibrating device, maybe a wrist band, as I barely slept on those two nights because of worrying about getting up in time. And I always wake early anyway so it shouldn’t be a problem…

I’m going back to Spain in September, so I’ll try to iron out a few of these wrinkles by then!

06/07/2024

June 7th

So, to answer my question. The pulsatile tinnitus in my right ear is still there, but is slowly improving. I have stretches of a few hours when it disappears completely and then comes back, but it doesn’t seem to be as loud or intrusive as it was before, just there, thrumming away in time to my heartbeat. Hopefully it will continue to improve until it’s just back to ‘normal’ tinnitus, which is what I hear when the pulsatile calms down.

I did have a CT scan in April, recommended by the surgeon when I saw him in March, and it came out clear, so I shall just stop worrying about it anyway.

On Wednesday, 5th June, I had my six-month check up with Lindsay. It wasn’t as comprehensive as the three month one for a number of reasons, one being that she could tell nothing much has changed from the inittial testing she did when I went in, and secondly she was running 45 minutes late. The patient before me had just sat down and Lindsay looked in his ear to discover a stuck dome. She needed to organise a room, a nurse etc to get it removed before he continued with his visit. When they took out the first dome they discovered a second, pushed further in. How you get a dome stuck in your ear and don’t know it I have no idea. For one thing it’s no longer on the end of the hearing aid, so the obvious place for it to be is IN THE EAR! It’s happened to me, three times, and every time I knew. Once I got it out, twice I had to have it removed, but you certainly know. It also affects your hearing which is dramatically worse with a dome stuck in the ear canal!

But she did the basic testing. I hear sentences with no background noise but wind noises filtered into the other ear at 92% accuracy (up from 81%). Words, the hardest because of lack of context, at 82% (up from 74%) and phonemes (distinct sounds) within those words at 91% (up from 87%) - for example if the word is ball, but I hear pall, one phoneme is correct although the word is wrong.

We talked about a problem I’ve had with one of the sound processors having a lot of static and hissing. Lindsay had recommended I contact Cochlear as, as it was only one processor it was a processor problem, not a medical problem. Cochlear agreed to replace it. They send it back to your programmed, and I had told them I was having a new mapping, but of course they didn’t wait for that, so I now have two processors with two different programmes. Fortunately the difference is slight and I will use the most recently programmed.

She also reminded me that I still have one freebie to choose from Cochlear. I don’t really need anything – I don’t even use the things I have; the TV streamer not at all, and the mini mic only rarely. But I will probably get an aqua kit so I can swim with it in if I need to. I really don’t need it as I hear enough in the pool with the other ear. I’ll take a quick look at the options available before I decide.

Next visit – December.

03/25/2024

26 March
This is late, and may be my last entry at least for a while. I’ve reached the point at which things may no longer improve at an appreciable rate. This is good news! It means I have achieved in three moths what might have been expected to take a year or more and I’m hearing the best I have for a very long time.

I went for an appointment with my audiologist, Lindsay last week. It took two and half hours but was well worth the time spent. First she gave me my new hearing aid for my right ear that is compatible with my cochlear implant. (gave is a bit of a misnomer, but you get the idea…) This means the implant, a Nucleus N8 and the hearing aid a Resound Omnia can be controlled through the same app for optimum performance. She got it set up optimally using a machine to do it, before asking me for my input. I’m fascinated by all the technology that is available. She loaded my hearing results into the machine which could then adjust the hearing aid to that level of hearing. After that I did the usual noise comfort levels with the implant, and deliberately tried to make ‘loud’ a little softer as I’ve been finding each time the cochlear implant was too loud in the real world. Apparently that’s OK to do if you can be consistent, and I was. Then with both ears together and everything was fine. I was in and out of the sound booth as Lindsay checked different things – first the hearing aid and then the CI and the CI and hearing aid together. While my CI auditory discrimination was actually slightly worse than last time, but still in the 80s, my CI and hearing aid together in quiet situations came in at a whopping 98%. With background noise the numbers significantly to around the 50% mark which is still remarkably much better than the 15% pre-op. And that may not improve much although it is where my focus will be for the next few months.

In practical terms this means one on one conversations in a quiet or pretty quiet place are not a problem at all or even with two other people. One person in a loud place is doable without using the remote mic although I definitely miss some of what is said but can fill in the gaps pretty well without asking for many repeats. I should probably using the remote mic outside of those instances and need to start using it more. I really want not to have to use it, but maybe the route to that is to use until I don’t need to. There will still be situations where it is necessary – for example being on a guided or self-guided tour. On the former the guide can wear it and his or her voice is streamed directly to my ears, yes both, now I have the compatible hearing aid. With the self-guided tour there is a cable you can fix from the recorder to the mic which then does the same job.

Telephone conversations that are streamed are fine, although I have to admit I’m still a bit nervous of them having been unable to make important conversations on the phone for a while. But hopefully no more passing the phone over to my husband so he can sort things out.

Sounds in general are much more normal. There’s still a little tinniness, still a little echo in the implant ear but the sound is much less overwhelming although from time to time I’m still unable to identify something. But once I have identified it it then makes more sense the next time. Music will continue to be a challenge. But while I can’t identify a song unless I know what it is, and not always even then, and most of the time still can’t sing in tune consistently it is getting better. Music sound off, but it does sound like music. And each time I go into a shop that has music piped I hear it a little more clearly and can make out the odd word or phrase.

I am so appreciative of what I have had done and the help I have had along the way. And, I hope this has been useful for at least one person out there.

Next challenge: What is going on with the pulsatile tinnitus in my right ear…

03/16/2024

16 March 2024
One of the questions most often asked is, "What auditory training apps are there and which ones work the best?" I am an iPhone user so this applies in general to the apple operating system. If you are an Android user you will need to dig a bit deeper. Some will work for either platform and if I know they will I have said so. I will say upfront my favourites were iAngel Sounds when I was beginning (and Advances Bionics is very similar), the Hearapp although I couldn't get beyond the free part even though I paid, and the Cochlear Telephone with Confidence for when I needed more than single word recognition.

Advanced Bionics Resources:
Though Advanced Bionics is a Cochlear Implant company, they offer free and paid apps that are wonderful for hearing aid or cochlear implant users of all ages. You do not need to be using an Advanced Bionics CI. The app is called Word Success. This app trains your brain to help discriminate word differences in quiet and noisy environments. It works in a similar way to iAngel Sounds with a choice of four words. You select the correct one. You have the choice of having background noise or not. I didn’t use it much because it is similar to iAngel Sounds which I was using daily but it is very good.
Plus it’s totally free! There is also a programme called Baby Beats which I have not used but gets good reviews with activities for very young children, which is available on Android as well, as is Word Success.
You can sign up for a free account either from the app itself or from the Advanced Bionics website.

Cochlear Telephone With Confidence
I love this because it gives you more than words. Although it’s put out by Cochlear Americas I presume anyone with any hearing disability can use it. I can find the information without logging in to Cochlear. I like it because you get more than individual words. The page will show you what topics are coming up – this week was Space Exploration, starting tomorrow, Sunday March 17th is gardening. You can click on each date to find the word list and the transcript of a short passage and a long passage. The voice maybe either male or female, it changes each day. When I first used this service I would read the passages ahead of time, or while I was listening. As I improved I would just listen to see how much I could understand. And as a bonus, you can switch languages and do this in Spanish as well! The number to call is 1-800-458-4999 . The webpage is https://www.cochlear.com/us/en/home/ongoing-care-and-support/rehabilitation-resources/resources-for-adults/telephone-with-confidence

Hearapp
This has one of the better free components – nine different exercises with between 17 and 42 examples in each set. You choose between two words – more difficult than you think and it is set to play those words six times total, so three and three. I used the free version of this and found it to be helpful. so I also paid for the full version but was not able to get beyond the free version even though I had paid. It was probably me, but be careful. When you redo the exercises you cannot tell when you are moving on to a new exercise, although I think you could the first time you did them. There is also a version specifically for kids. Available from googleplay for android.

Hear Beyond
This is a different type of auditory training. It deals with localization, frequencies, sound matching, sound in noise etc. If you are a one sided cochlear implant recipient the localization exercises are obviously no good. Some of them were quite interesting to try but a lot relies on memory rather than auditory understanding. I enjoyed playing around with it and it’s free, so it's worth taking a look at.

Hearoes
There is a free component to this app and rather than having you distinguish just between words, you also get to distinguish between different environmental sounds. When you achieve 80% success you can then choose to add city or café background noise. The free component is limited to three exercises a day, so not much, but worth using in conjunction with other apps.

iAngel Sounds
This was probably the best app I used. Completely free. You select the word you hear from four choices and if you get it wrong it plays what you chose and what it was twice each. There are a number of modules and you can choose the module you want to practice, the level of difficulty, the number of questions (10, 25 or 50), the number of choices (2, 4 or 6) and listening conditions from quiet, to phone to café. You can even slow it down or speed it up, so for free, very good value! You can find more information here: http://iangelsound.emilyfufoundation.org I know there is an android version of this.

LACE:
An online program developed at UCSF. Auditory Training programs retrain the brain to comprehend speech up to 40% better in difficult listening situations such as noisy restaurants, rapid speakers and competing speakers. Just as physical therapy can help rebuild muscles and adjust movements to compensate for physical weakness or injury, LACE can help you develop skills and learn strategies for dealing with situations when hearing is inadequate. Also like physical therapy, it takes consistent training. If you are ready to commit to this program, you should plan on completing the training within 2 weeks to really reap the rewards of this program. The cost is £99 for British English, $119 for American English.

I did NOT try or buy it. Seems expensive for not knowing what you’re getting.
Check out this video https://www.youtube.com/watch?v=ypudPb2sbIA
for an overview of how our hearing brains and the programme work.

LACE (Listening and Communication Enhancement) Auditory Training is a key piece to hearing better in noise. Watch this video to find out how LACE can help, n...

03/09/2024

March 8th
There is really nothing new so I’m going to write about one of the ways I volunteer and how my hearing was affecting this, especially during the pandemic and again now.
One of the things I have done since I retired and moved to Lawrence KS is to become an Audio Reader Volunteer. Audio Reader is a group affiliated with the University of Kansas and Lawrence Public Radio (they share their facilities and use their tech assistance, have interns and volunteers from KU, etc). Their goal is sharing the gift of sight through sound. They can be accessed not just by the blind or visually impaired, but by people who have physical difficulties in holding reading material, or older people who need an easy way to listen to a wide range of material, from larger newspapers (The Kansas City Star in our region) newspapers from mid-sized towns (Lawrence Journal World, for example) and a number of smaller local papers from small towns in Kansas and Missouri. They also read things such as the NYT book review and travel sections and have a number of magazine programmes. And obituaries and the special offers from grocery stores around the region are some of their most popular offerings. Additionally they also read books, and will read books or magazines on request. So, for example, if a sight disabled student needs a textbook read, someone will volunteer to do it, and give hours of time so that just one person might benefit.
When I started back in 2016 most, maybe all reading, was done in the studios. They have about seven studios and some broadcasts are live (this is definitely NOT for me) and many are pre-recorded. You record with headphones, and can go back to correct errors, by rewinding and re-recording over the top. This was the perfect way for me to record. My first efforts were with the Lawrence Journal World, our local paper, the Sunday edition, when, pre-pandemic the studios were opened for limited hours at the weekend. I later added another multi-paper programme and would also substitute so was in the studios on average three times a week. It was going really well until the pandemic which struck, which coincided with the worst of my hearing loss when a flight left me with minimal hearing in both ears. At that point people were asked to read from home, but with my profound hearing loss in both ears it was something I could no longer do and I was sad to give it up until we were able to return to the studios a year and a half later. With the better equipment I was able to hear myself, and more importantly able to hear myself on rewind for when I made mistakes and had to record over the top of what had gone before. And it somehow seems a little strange to have the profoundly deaf recording for the blind!
It is also, wonderfully for me, excellent auditory training to sit for two or three hours each week recording and listening to the sound of my own voice.
And to finish this off with a true example of coincidence - my husband was a student at KU for one year, before entering the Naval Academy. He was a member of a fraternity, Phi Kappa Theta, and where was the fraternity house? Right where I record every week before Kansas Public Radio took over the building and had it renovated.

03/01/2024

February 29th
This week was time for a routine appointment with my right ear audiologist, Jamie. There was really nothing much to do as the hearing in my right ear is remaining stable, so we chatted about my CI and she was delighted I am doing so well. She also had a student from KU there who is training to be an audiologist so I went over my history with her – I’ve done this a couple of times when Jamie has had a student, and it’s always interesting. We talked about when I would see her going forward – all my visits to her are already paid for for the life of the hearing aid, a Widex, as part of the deal I signed up for when I first got the hearing aid. With my hearing fluctuating so much at that time, it made sense to have as many visits as I needed and it has definitely been worth it! We decided I would see her in May after I get my new hearing aid for the right ear as it would be time for a check-up anyway, and then probably just once a year as I will keep one Widex as a back-up in case anything happened to the new hearing aid. After that I will probably just see her once a year to make sure the Widex is ready to go should I need it and for her to test the hearing in my right ear.

Things continue to improve with the cochlear implant, although they are so good, they improve very slowly! I feel like it’s probably not going to get too much better in some situations, although I know it could still improve in background noise and there are certain voices that I don’t hear as well as others. It’s pretty specific by this point and I’m not sure what else I can do other than just go on listening/talking/trying to be in noisier places etc. I don't expect much change to happen until after my next mapping in four weeks time and I think the next big step will be to get the music programme set up and see if I can improve the sound of music.

02/24/2024

February 23rd
Apologies, I forgot to add this yesterday.

This has been another week with little change. I think that will probably be the case until I have my next mapping, and I will be curious about the results of a full hearing battery at that point. I hope to continue to be a gold star student! Next week I also have an appointment with my ‘good’ ear audiologist here in Lawrence, and I am also curious to know exactly how well that ear is doing at the moment.

I had a zoom meeting on Tuesday – my first ever. I had some problems with not being able to unmute my mic and had to completely reboot my computer before I could get it working. Once I did it was fine in that I was able to hear everything that was being said. And this was on the desktop, so not streaming directly into my ear. On Friday it was Zoom again. This time to have my interview for renewing my Global Entry Card. It went perfectly and I could hear everything so I was delighted.

Another thing I’ve been playing about with is live captioning on the iphone. It might have been useful if I had known about that last summer in the UK (another story – what to do when your hearing aid dome from your only useful ear gets stuck in your ear on a Saturday…) It seems to work well if all you are doing is talking, so leaving your phone on a table might capture more conversation. It doesn’t seem to work with the mini-mic which cuts off as soon as live captioning starts. I know there is still a lot for me to explore.

02/16/2024

February 16th
On Sunday it was my nephew’s birthday. He was 39 but in many ways he is still a child. He is loud and dominates the conversation and screams when he sees you and hugs you hard and often. Each year his parents take him, aunts and uncles and friends in the area to a Mexican restaurant as soon as it opens on a Sunday morning, where they know him well and treat him beautifully. There were ten of us, and even though we were almost the only people there, the music was loud and our table was loud. And while I understood more than I have in previous years I still really didn’t understand much. But because I could actually hear, even if it didn’t all make sense, and because I could understand if someone spoke to me directly – my daughter on my left, husband on my right, brother-in-law opposite I did feel much more a part of things. We then went back to their house and played games around a table. Again, loud, everyone talking over everyone else. It was a bit like the restaurant. If I was spoken to directly it was fine, but I missed a lot of general conversation but still much better than a year ago! It was also exhausting. Ten is obviously a lot of people to be dealing with and listening to, but the fact I could hear them and distinguish easily WHO was speaking, even if not exactly WHAT they were saying, was great! A partial success.

Really not much else to report this week. I am slightly surprised that my ear is still a bit sore from time to time, especially if I wear my glasses for a prolonged period. Not horrible. Just a bit irritating from time to time.

02/09/2024

February 9th
You may have noticed a change to the blog name. I wanted to just strikethrough the word ‘hopefully’, but that is not something FB accepts, so I decided to remove the word ‘hopefully’ altogether. Exactly two months after the operation, it is unequivocally a success and I am hearing more than I have in my right ear for decades. I have nothing but gratitude for my team at the University of Kansas Medical Center, especially Dr. James Lin, my specialist and surgeon, and Dr. Lindsay Lad my fantastic audiologist who is helping me make the most of my Cochlear Implant.

On Sunday I decided to give the CI, the hearing aid I currently use in the other ear, and telecoil a workout at the Lied Centre, our theatre here in Lawrence. It was the annual high school and middle school talent show, with acts ranging from stand-up comedy, to different styles of dancing, and instrumental numbers and singing. Tickets were cheap, so if the evening was a disaster, I hadn’t lost a lot. Telecoil works in any seats except the side boxes and it was free seating so I took a seat on the end of a row the better to leave unobtrusively if things didn’t work out too well. The telecoil worked fantastically, far exceeding my expectations. It really sounded as if the MC or whoever was talking directly you to you. The sound/music streams directly into your ear so it’s just like streaming from the phone or tv or whatever. The standard of the performances was excellent. Unfortunately I wasn’t well acquainted with any of the music that was played so I couldn’t tell if I ‘recognised’ it, but it all sounded OK (not brilliant, but definitely better than even a couple of weeks ago) with the exception of the piano which still sounds horrible sounding both high and flat with a dose of metal thrown in. I was pleased that I was able to stay until the end and enjoy it.

While I was there, I played around using the hearing aid with the CI and the CI on its own. The aid didn’t add a lot of volume, probably none in fact, but did add some fullness to the sound.

And yesterday was another basketball game; the women’s team from KU against Houston. We won by almost 20 points, but that wasn’t the amazing part (I have great faith in this team at home). That was that I could understand noticeably more of the announcements than I could even a week ago.