Activation of my recently implanted right ear took place Tuesday morning. Wow! This go around was very different from the left ear switch on a year ago. No R2D2 whistling and beeping away and no Darth Vader’s deep cavernous voice making appearances. This time I heard the melodic tunes of a xylophone playing over and over. Of course this is a much more pleasant sound but I could not hear a single word Don or the audiologist said let alone my own voice. Panic set in and I said to James, the audiologist, “Is that it?” He laughed and I saw him shake his head in affirmation. Panic set in as Don and I left SacENT to enter the real world. I quickly plopped on my left ear and could hear and understand speech with the xylophone playing in the background.
You ARE kidding me right, James, about leaving me with an xylophone playing and nothing else coming through??? Panic set in!
Since Don and I were starving as we had been at SacENT for three intense hours (CT scan of my head, clearance from the surgeon and nearly two hours of activation) so we headed out to lunch then did some shopping. Thankfully I temporarily forgot about hearing only an xylophone as we went about resuming real life…food and necessities.
In the car on the way home, I removed the “old” processor to check out what I could hear with the new one. To my utter amazement I could now hear Don’s voice sounding like Don. The xylophone continued but wasn’t as loud. I decided to pull up an aural rehabilitation app on my iPhone called Angel Sounds and give it a whirl. I set it for the easiest level and began listening. The first three words were incomprehensible to me then…boom…the words came through clearly and easily! I set it for a more challenging level and aced it. The tears started rolling as I was astounded! I then had Don give me sentences about nothing in particular and turned my head away from him to see if I could understand using no visual cues. Once again, I was highly successful. Whereas I didn’t catch every word I got 85% of what he was saying. Wow! That wasn’t even remotely the case a year ago with CI #1. Then I was just trying to hear my name!
By evening sound was coming in rich and full and I realized I was truly hearing in surround sound. It confirmed for me why I made the decision to go bilateral. I really disliked the one sided hearing as it always felt unbalanced and unnatural. Plus I was understanding speech so much better than when wearing one processor and/or the compatible hearing aid. And this was just day one! Plus the new ear is smoothing out the scratchy electronic sounds I’ve lived with for the last year as they are already disappearing. Granted the new ear by itself is very electronic sounding but it’s okay as I now know it’ll disappear over time.
Yesterday I played bridge in Stockton and wore both processors the entire time. I did lower the volume once on each processor as the afternoon wore on but I was hearing quite well. The director made an announcement before play began and I clearly heard 90% of what he said. With just one processor I was lucky to get half of what he would say. I’m truly in a state of shock as to how much better sounds are already…and it was only day two! Afterwards I went to Panera Bread with a friend for a bite and to catch up on life. Music was playing and the tables around us were filled with talking people. No problem! This particular friend is somewhat soft spoken and I had absolutely no trouble understanding her. It all seemed so “normal” to me. ME…NORMAL??? It’s been years 40+ years and that was with bilateral hearing aids since I’ve heard this well.
My four ears! The two off the ear processors look identical so a red nail polish dot was used to mark the left ear one as well as the remote to operate it. The two over the ear processors are managed by an app on my iPhone. Of course all this means lots of batteries to charge daily! Who cares? I can hear!
The new ear will need to be worn by itself a minimum of two hours a day to “work” it and prevent the old ear from being the “boss” ear which currently it definitely is. Don and I have already begun training it but using much more advanced material than a year ago. Additionally I’m listening to audiobooks, TED talks, music, radio, TV news and apps on my own as a way to rehab it. We’re so much further ahead with aural rehabilitation ideas than last year so it seems like a breeze.
2019 was one of the most challenging years in my life as I struggled to learn to hear electronically. However, I believe it paved the way for my brain to transition easily to hearing well with the new ear. There will be ups and downs in the months ahead but I’m hopeful my rapid progress continues.
Surgery round 2 was scheduled for Monday, January 13th at Fort Sutter Surgery Center in Sacramento. Same place, same surgeon, different time, different ear. This time Don and I arrived at 6AM for a 7:30 date with the doc to implant my right ear.
I decided last fall the “compatible” ReSound hearing aid wasn’t helping me hear realizing the CI processor was the workhorse. The hearing aid was useful when streaming TV, music and phone calls from my cellphone but I discovered I could hear reasonably well without needing it. Thus the decision to move forward with going bilateral. I really don’t like the single sided hearing provided by my left ear and truly believe I’ll benefit from having surround sound. After all, we have two ears for a reason…to provide balanced hearing and directionality.
Round 2 went 110% better! I wasn’t nervous or even anxious…just wanted to get the show on the road and get home. The operation took 30 minutes less than expected. Dr. McKennan said the right ear was easier to implant for whatever reason. I had talked to the anesthesiologist beforehand letting her know I was very doped up last year asking her if it would be possible to lighten the cocktail. She left out an opioid. What a difference! I woke up easily in recovery ready to go home. I was discharged by 10:45AM and home in Woodbridge by 11:30. Best of all, I was able to walk into the house on my own…no walker or human help needed! I did head straight to bed to sleep but napped off and on all afternoon. Vertigo and lightheadedness did not occur and I had no balance issues like last year. Hallelujah! Pain was not present either but I did experience slight nausea. I actually ended up watching most of the National College Football Championship game that night though I did fall asleep for one quarter.
I was allowed to remove the dressing this morning (Wednesday, the 15th) and decided it looked better than last year’s snaking incision. Thus I’m sharing it via a photo as it demonstrates what we CI recipients go through.
The incision snaking it’s way behind my ear! The purple blotch at the bottom is bruising which didn’t occur last year. Go figure!
You can see how much hair was shaved off…sigh…I’ve got my work cut out growing it back as it’ll take several months…🤪! Thank goodness for hats, scarves, maybe even a wig. I’ll survive my lack of hair as I keep thinking about how well I’m going to be hearing…hopefully!
A real plus this time is I have my bionic “ear” to hear with. However, when I remove the left ear processor I have discovered I am 100% deaf and cannot hear myself talking, a very strange phenomenon for me and a bit scary. It’s not like I could hear much with that ear before Monday but I could hear our dog, Ruby, barking and the rattle of dishes when unloading the dishwasher as well as the sharp sound of cabinet doors shutting. Now…nada.
Feeling better after showering and washing my hair this afternoon!
What a difference a shower makes in how one feels! This afternoon I showered and carefully shampooed my hair. I even dried and styled it the best I could. Ahhhhh…to feel normal again! I even decided to skip the jammies and put on real clothes. Life is good.
Next up: Activation of CI#2 is Tuesday, February 11th and I can hardly wait! I’ll have my work cut out to make the two work together but bring it on…I’m ready!
Nine and a half months post activation of my cochlear implant processor I’m still discovering sounds I haven’t heard in years. My latest, greatest rediscovered sound is the crunch of fallen leaves as I walk outdoors enjoying our beautiful fall weather. I’m like a kid running through the piles enjoying the rustling sounds as I kick them around as well as the crunch when I stomp on them. Music to my bionic ear!
The pleasure of simple sounds!
I continue to enjoy hearing better than I have in years but I did need to have my audiologist make major adjustments at my early November mapping appointment. This is a time when the audiologist tweaks electrode settings if the recipient desires changes. I had grown increasingly unhappy with how loud my world was since my last mapping mid-July. Playing bridge was no longer fun for me as the Stockton Bridge Center where I play three times a week was waaaaaaay too loud…to the point where I was considering dropping competitive bridge. Restaurants were very challenging almost unbearable. I was getting headaches almost daily from my overly loud world of sounds. Daily I found myself taking 30-60 minute processor breaks. With the changing weather Don and I weren’t outdoors as much for morning brain training and the echoey sounds of our home presented challenges. All I could do to cope was lower the sensitivity and volume of whichever processor I was wearing.
How is that different from the audiologist making adjustments you might wonder. I can only alter the sensitivity and volume slightly. James, my audiologist, can go through each of the 22 electrodes and alter what’s called the T & C (threshold and comfort) levels on his computer which is precisely what he did. He literally remapped my processors. My role was to let him know when I heard beeps and loudness. It took a full hour but the result is mostly wonderful…at least for now! My understanding of speech continues to sound raspy, grainy, hoarse…in other words electronic sounding. However, it continues to improve albeit at a snail’s pace. The only time I hear with clarity is when I stream TV or phone calls directly to my processor and hearing aid as the latter smooths out the graininess. Interestingly, the hearing aid is of almost no value to me when not streaming.
Did I hear that beep or didn’t I???
I met with the surgeon, Dr. McKennan, following the remapping and have definitely decided to go bilateral mid-January. Admittedly, I was on the fence before the remapping because my world was unbearably loud and I had visions of living with even louder, intolerable sound. The doctor thinks I will benefit greatly from being bilateral because I will have stereo sound as well as directionality. After all, our brains are meant to hear with both ears. A side benefit is I will more than likely never have to be without hearing in the event one of the sides malfunctions internally (the implanted receiver). Whereas it’s rare it does happen occasionally. Making the decision to go bilateral seems simple enough, but choosing to have elective surgery requires true commitment.
Hearing loss is the invisible disability. It’s like a duck appearing to glide effortlessly over water while paddling furiously underneath. Concentration fatigue aka as hearing exhaustion continues to be an issue for me. The strain of trying to make sense of what I hear all day finds me going to bed between 8:30 and 9:00 most days. Then, of course, I’m up bright and early. Ugh! Like most of us I have the most energy in the morning but quickly run out of it as it dissipates with the effort of trying to understand speech through the electronic guttural sounds I live with. Add to that walking and exercising my body to keep it going plus the mental fatigue of playing bridge three days a week to exercise my mind! 🤪 I love escaping into the quiet world of books although I now frequently listen to audiobooks for training my brain to hear. I try to keep my focus on being thankful I can hear rather than succumbing to self pity.
I’m ending this posting with CI humor. Late September while returning home (Don was driving) from the Sacramento airport my Kanso processor (Katie: the off the ear one) batteries died. Because it was nighttime, I couldn’t see to change them so I whipped out my N7 (Nevin: the over the ear processor) and plopped it on my head. We arrived home and I found myself wondering why it was hurting a bit. Lo and behold, there was a dead Kanso battery stuck between my head and Nevin’s magnet but amazingly I could still hear! Go figure. I’ve included photos to help visualize what happened.
A Kanso battery stuck to the magnet inside my head!
The dead battery wedged between my N7 processor and the internal magnet! I could still hear!
The marathon continues! Will write my next blog in January following surgery.
I’m asking myself why didn’t I do this sooner??? I had hoped to be asking myself that question a year after being implanted but I’m already there! I’m amazed at how well I’m hearing in comparison to how poorly I’d been hearing over the last decade. I’m still a long way from truly hearing well but I’m thrilled with my new sense!
Where to start??? It’s been almost six months since activation of my cochlear implant and three months since my last blog posting. A tremendous amount of progress has occurred.
May 22nd I had another mapping with my audiologist, James. R2D2’s whistling followed me the entire time I wore my processor which is every waking moment and I badly wanted to boot him back to the galaxy from which he came. James gave it a lot of thought and decided to turn off the top two electrodes (there are 22) realizing my brain had nothing with which to attach those high frequencies since I lost them at a pre-lingual age. Instant relief! The whistling stopped but I could still hear high frequency sounds such as the microwave beeping and the twittering of birds. I turned cartwheels and did the happy dance in between! Obviously I didn’t benefit from those two electrodes. That freed my brain to truly start understanding speech without the constant distraction of R2D2.
Right after Memorial Day I attended a six day bridge tournament in Sacramento and played twice a day (roughly 7-7 1/2 hours) surviving it reasonably well. I still suffered from hearing exhaustion as the strain to understand and make sense of what I’m hearing was very much present plus going out to dinner with the group in what I considered noisy environments. I discovered when I was seated along or near the perimeter of the large conference rooms in which we competed I did better. It’s much noisier in the middle. Consequently I learned to ask for accommodation and the tournament directors were happy to oblige. I also learned to return to my hotel room to remove my processor and decompress when super tired. Some days were good; others were challenging.
At book club a week after the tournament someone asked me how the CI was going. My reply was I’m hearing but not understanding much speech without visual cues. Don and I had been faithfully training my brain to hear electronically but I was starting to get discouraged again.
Sign outside an audiologist‘s office
I can’t exactly pinpoint when my brain truly started making sense of those electronic sounds being transmitted via the electrodes but it was shortly after that book club in early June. That was also about the time when Don and I started doing my morning aural rehabilitation outdoors with our coffee. In just a couple days of outdoor training I realized I was understanding him considerably better outside. A water fountain provided white noise and traffic randomly went by. No problem! I understood him very well outdoors. It hit me that the interior of our house is not conducive to good hearing. The floors and countertops are stone, the walls are untextured, ceilings are high and the windows are shuttered. I must make changes but it’s not going to happen immediately.
Meanwhile, training became more fun for both of us. He read “Ramona the Pest” by Beverly Cleary to me without visual support and we laughed and had some wonderful discussions about the minds of five year olds. “Aster Aardvark’s Alphabet Adventures” by Steven Kellogg followed and we enjoyed the graphics. Just like a teacher reading to his/her class the pictures were shared with me following the reading of each letter as we worked through the book. Was it easy? No, but I always managed to get it with repetition.
Gradually we have progressed to newspaper articles for my daily training. Don chooses an article, reads a paragraph then goes back and breaks it down for me to repeat. All of this with no visual cues. I’m now nailing about 75% of the article but even with the words I miss through the first reading I’m getting the gist of it. Amazing! I could never do that prior to being implanted.
With dread and apprehension I faced another hearing test in the sound booth on July 15th. At my first hearing test the end of March I scored 0%…yes…I understood nada and was thoroughly bummed but not defeated. This time I scored 46% while wearing just the processor and 54% with both the processor and hearing aid in my non implanted ear. I had asked James not to give me sentences with background noise like I thought he did in late March and he looked at me quizzically while telling me there would be no background noise…just sentences. Once the testing began, right off the bat, I said, “Oh, these are real sentences” while repeating what I heard and it hit me that there was no background noise during the late March testing but everything sounded staticky to me as my brain was not yet interpreting sounds with no visual cues. No wonder James looked at me quizzically…clearly a misunderstanding on both of our parts.
To give you an idea of what I’m expected to hear, there are sentences in both men and women’s voices and they range from easy to complex to nonsensical. Examples: 1) The new Barbie doll is pregnant and 2) He crushed a can on his forehead. Easy? No. I heard “doll is pregnant” and “on his forehead”. The parts that make sense to my brain. Barbie…pregnant??? Crushing a can on your forehead??? Don sat behind me in the booth and heard everything but not me. However, all three of us were thrilled with my progress. My electronic ear was truly beginning to make sense of sounds and will only continue to improve. I sometimes wonder if my score would have been higher if I had felt well. I woke up at 4AM and vomited numerous times (probably should have cancelled the appointment) before arriving for the 8AM testing. Upon arriving home I barely made it to the kitchen sink before up chucking again. 50% with processor only, perhaps? By the way, I had to keep the appointment as I needed an adjustment to my processor because I was leaving town two days later. I’m a driven individual but wouldn’t have gone just for testing as that could be rescheduled.
July 18th I caught an 8AM flight with friends to Las Vegas to spend five days participating in a large bridge tournament. We literally checked in to the Cosmopolitan where the tournament was being held, ate lunch and started playing the first of two sessions at 1 and 7:30PM. The Cosmopolitan is a huge casino/hotel complex with over 30 places to eat. At any one time there are probably between 5000-6000 people on site. You get the picture…overwhelmingly noisy! Plus it’s ultra modern so lots of stone, high ceilings and reflective surfaces…echoey with sound reverberating from every surface. Not a good hangout for me! I found myself asking, “What was I thinking?” When I booked the trip. Clearly I wasn’t!
Because of my experience in late May in Sacramento (much smaller tournament) I knew to ask for accommodation and received it throughout my entire stay. We play in huge ballrooms so perimeter tables are critical for me. Fortunately the ballrooms are carpeted and talking is minimized once play begins. I made it through that first day though I was exhausted both from hearing overload and traveling. I did go to my room while everyone else went out to dinner, removed my processor and decompressed before playing the second session.
The five days spent in Las Vegas proved to be the absolute best aural rehabilitation for me! By the time we flew home Monday night the overwhelming noise of the Cosmopolitan became “normal” for me. I believe my brain had adjusted and it was no longer bothering me. Plus the noise wasn’t wearing me out…what a breakthrough! The Vegas airport is an extremely busy, noisy one…no problem. The noise of the jets…no problem. This morning while walking my dog through the neighborhood numerous blowers were going as well as lawn mowers yet none of it bothered me. I couldn’t have said that a week ago as they seemed so loud to me. I’m utterly amazed at the difference but very happy.
Last night, I attended my book club and realized I could actually understand what was being said across the living room as speech was coming through to me loud and comprehensible. What a contrast to the last one on June 7th. Of course I’m using visual cues but aren’t we all as we look at each other while speaking in our culture. Do I hear everything? No, but I certainly understand better than I have in years.
To say I am thrilled with my CI at this point is an understatement. It’s the best thing I could possibly have done for myself. And it’s only going to get better. To that end, I have decided to go bilateral and am currently planning on surgery next January. I scheduled an appointment for early November to start the process. Ironically I have to have another hearing test in my unaided non implanted ear to jump through insurance hoops. SacENT is allowing 15 minutes for the testing (one hour is the norm) because they already know I’ll fail it miserably (5% hearing in that ear). We had a good laugh over that! Admittedly, I don’t want to go through surgery again but the desire to hear is strong enough to overcome it. I want to hear in surround sound. The “compatible” hearing aid just isn’t cutting it for me. It’s good for streaming music, phone calls (I actually hear quite well on my iPhone with just the processor), and TV. Great…I can continue to stream with two processors. I do believe surgery will be easier next time. For one, I’ll have an ear to hear with. My plan is to schedule nothing for the first three weeks and hole up at home in my jammies. Will there be balance issues again? Who knows but I do know I can and will deal with whatever is thrown my way. Don and I will need to rehab the new ear, too, but my guess is it’ll go much faster.
My brain still hasn’t normalized the electronic sound but it’s getting there. Sounds are still raspy but I tell people to visualize sandpaper SLOWLY smoothing out the rough edges. My research indicates it can take up to two years for recipients, especially older ones, to fully adapt to the electronic sounds.
It’s been 12 and a half weeks since I’ve been activated. Slowly but surely, I’m learning to hear with this amazing device implanted on the side of my head. It boggles my mind to think I’m receiving sound from the environment to the external processor (literally a mini computer!) fastened to the side of my head by magnets. There, sound is transmitted to the internal receiver (the square part shown in the picture below) and sent to the 22 electrodes threaded through my cochlea. The auditory nerve then sends those sounds to my brain which is doing its best to make sense of it all. Modern science truly is wonderful! And I’m appreciating this modern science more and more every day.
Am I hearing better? Yes, much better. Am I understanding speech yet? Without lip reading, mostly no. Does what I’m hearing sound electronic? Very much so. Human voices sound like an old scratchy record and R2D2 whistles and beeps 95% of the time. Do I find it annoying? When tired, very much so! However, most of the time I am able to tune out R2D2. Ignoring the scratchy record is a bit more challenging as I can’t tune it out. Do I have faith my brain will normalize this electronic hearing? Yes, but I do believe it will take me all of this year to do so, possibly longer. I can already tell I’m gaining on it. Week by week, I notice small changes. Just earlier this week while at DMV to get a real ID I actually followed a short conversation between two workers understanding all of what they said without reading their lips. I’m finding myself catching numerous moments like this. For me, that’s progress!
My last blog I expressed frustration at not hearing as well as I thought I should be given how much aural rehabilitation I had been doing the first eight weeks. Not being the most patient person, I knew I had to approach the process a bit differently. I put the signs pictured below on my fridge to serve as daily reminders and I backed off the brain training a bit. Actually what I’ve done is look for ways to do it naturally. For example, while driving I listen to talk radio, something I never did in the past as I couldn’t understand any of it. A couple of weeks ago while driving to Stockton I actually understood what the topic being discussed was…a real aha moment for me. A week later I was driving downtown Lodi when I realized I was understanding the entire conversation between a woman pediatrician and the male interviewer…a huge aha moment for me. I was so excited I almost ran a red light as I was concentrating on what I was hearing not driving. Can I now hear everything being discussed on talk radio? No. Much depends on the quality of the voices, accents, speed at which the people are talking, etc. Do I always catch words, phrases or sentences now? Yes. That’s progress.
Motivation
At my last mapping appointment with James, my audiologist, a special program was set up for me so I could play in bridge tournaments. Happily I can report it worked beautifully! I attended a crowded, very noisy tournament in Modesto recently, but thanks to the special program turned on with my iPhone, I had no trouble focusing while playing a full day of bridge. I had my partner wear the mini mic set at a low volume so I could hear her well. She just can’t make any disparaging remarks about my play when I leave the table as I can understand much of what she’s saying even from the restroom…😜. I created the card depicted below so the opponents would understand why my partner was telling me what they said if I didn’t understand. It worked well and people were very kind about it. The room was so noisy that people were complaining about it. I smiled and thought to myself, for once, I had the best situation since I didn’t have to listen to it.
Incidentally, I also mentioned in my last blog how loud my world was and that I didn’t like it. Then one day, I realized my world wasn’t so loud after all. I can’t even pinpoint exactly when that occurred…just that it had. It was at the Senior Center in Stockton where I play bridge Wednesday afternoons when I had that aha moment of it’s not so loud in here. There’s usually 16 to 20 tables of bridge being played with the tables sitting on a hardwood floor in a room with high ceilings and concrete walls…in other words not conducive to quiet. Following activation the end of January it was way too loud in there for me. I would lower the volume to where I could barely hear anything so I could get through the session. Then came that Wednesday recently when I realized I didn’t make any changes with the volume without even thinking about it! My brain adapted and now it’s my new norm. Neuroplasticity at work!
One day in early April, I drove to Stockton from home to play bridge at the club. I streamed a playlist from my iPhone to both my hearing devices (CI processor, compatible hearing aid) the entire 25 minute drive happily listening to music. Upon arrival, I exited my car midway through a favorite song and proceeded to dance my way across the parking lot into the club where I finally turned off the streaming. A few minutes later, a friend came in frantically looking for me. It turns out I left my car engine running and unlocked! I can honestly blame it on this wonderful new “treat” of being able to emulate those ear bud wearing teens and runners! Needless to say, I ran out to my car to turn off the engine and lock it. Just can’t make that mistake again.
It’ll probably be two/three months before I add another blog to my CI musings. The progress is steady but slow and I just can’t imagine anything earth shattering is going to occur anytime soon. I will update my blog the end of July for those of you interested in my hearing journey. Personally, I think the best is yet to come.
Defeated. Perhaps deflated is a better descriptor for how I felt upon leaving SacENT Thursday. I returned March 28th for my fourth mapping with James, the audiologist working with me to program my cochlear implant processors and compatible hearing aid. It had been four weeks since I saw him and exactly eight weeks since having my CI activated.
I have been engaging in aural rehabilitation actively seven days a week “working” overtime to train my brain to hear electronically. I wear a processor from the time I get up to the time I go to bed. I work with Don an average of 30 minutes per day supplementing my training with apps and reading while listening on Audible. Just wearing the damn processor is training! I rarely wore the hearing aid as I believed I’d force the implanted ear to hear.
I truly thought I was hearing better than before being implanted. Everything was louder. Too loud at times. I’ve done a good job at fooling people over the years with just how poor my hearing was. Thursday I realized I was fooling myself into thinking I was hearing more because I want that to be the case. I want that badly. My world is louder but loudness isn’t being translated into understanding speech. Lip reading combined with sound is how I continue to function in a hearing world.
So what happened Thursday at my mapping appointment to cause me to feel defeated? James started by testing my hearing in a sound booth with me wearing just a processor. He simply wanted an audiogram which means listening for tonal beeps. Upon completion I pushed him to give me sentences thinking I would do reasonably well. Reluctantly, he did so and it proved to be too challenging for me. I only got one sentence out of six and didn’t even get that sentence 100% right. Mercifully he stopped, recognizing my defeated feelings.
We then returned to his office where he proceeded to tweak the intensity at various frequencies to the 22 contact points surgically threaded through the cochlea. I thought I was at “normal” volume a month ago but I was wrong. My world is louder yet. I now understand what hearing people have to put up with in this noisy world. Four days later it’s still too loud but I am adapting and know I will continue to do so. Our brains are amazingly plastic.
Incidentally, the audiogram showed my implanted ear is hearing all the way across the critical speech range into the higher frequencies I haven’t had since losing them as a 15 month old toddler. It shows the CI is working as it should. Hurray!
As we were leaving (Don accompanies me to these 9AM appointments because I need to be in the diamond lane to arrive on time…😜), I casually mentioned to James that I was sorry I hadn’t gotten a CI 10-15 years ago when my brain was more plastic. He quickly stated that wasn’t true. Rather, it’s my hearing history that’s the problem. Having lost the high frequencies as a toddler means my brain has nothing to remember. CI recipients who lost their hearing as adults are the most successful. His statement took the wind out of my sails for the second time as he told me that when I met with him last December. I now fully comprehend. Thus the feeling of being deflated.
James says I will hear better but I may always need to lip read and that it will take time…lots of time. I’m going to continue to plug away at training my brain to hear electronically but scale back the time I put into it as there are other activities I’d like to do. As I mentioned before, wearing the processor day in, day out is brain training.
I wasn’t planning on publishing another “musing” quite so soon but this last week has been full of highs and lows. At my last mapping, the audiologist programmed my processor for “normal” hearing. Keep in mind, I’ve never experienced the real world of hearing. What a shock! The bang of cabinet doors, the slamming of car doors, the hum of background music being played in stores, the buzz of people talking in public places. It’s loud!
The worst, though, the absolute worst noise I’ve encountered is at the bridge club or at the Senior Center playing competitive bridge. It’s noisy! I initially took to playing duplicate bridge over social bridge because bidding boxes are used and talking is minimal once play begins. Duplicate was perfect for the quiet world I inhabited. This week I discovered it’s not quiet when between 36 to 72 people are clustered at tables of four playing a “quiet” game. The snap of cards, boards being turned, chairs scraping, the chorus of murmuring voices all bother me now. I went home exhausted after each game last week and immediately ripped off my hearing devices and lay down to decompress from sound overload. My partner commented on my continuous wincing at loud sound telling me, “Wendy, this is what we’ve been hearing all these years. It’s normal.” Ugh! For the first time since being activated I found myself yearning for my formerly quiet world. Hopefully, my brain will adapt over time to this new “norm” of hearing.
Oh…the joy of music!
On the flip side, I’ve discovered music is much better than what I was told or read about when researching cochlear implants. After all, the main purpose of a CI is understanding speech not music. For those of you who’ve read the entire blogging series, you may recall the night before surgery when Don and I listened to my iPod late into the night because I was sure I’d never hear it again as I knew it. Don and I were watching Victoria on TV with sound being streamed directly into both my hearing devices. A scene at Buckingham Palace took place where a young woman was playing a harp. I perked up astounded at the high notes being played and how beautiful it sounded. The hearing aid provided natural sounding music but the processor gave me notes previously out of range. What a discovery!
That led to playing my favorite music on Pandora via the TV. In listening to a variety of songs, I accidentally discovered the low end of the spectrum with a bass guitar that I hadn’t heard in years. Tears of sheer joy flowed! Since I’ve rediscovered music I now have Pandora set up with playlists on my iPhone which is streamed directly to both devices. Not all of it sounds good but it’s much better than initially anticipated.
The law of unintended consequences dictates that I got more than I expected. I expected to understand speech better but I didn’t bank on hearing music better along with all the unpleasant sounds in the world.
The Speech Banana (speech sounds occur in this range)
My Cochlear implant processor has been activated just 30 days now and a whole new world of sound has been opened to me. I’m a kid in a candy store but unlike candy these sound treats aren’t high in calories. I recently went walking through the Lodi Lake Wildnerness Area with a birder friend hearing strange high pitched sounds denied to me since I was 15 months old as a high fever destroyed the high frequencies. My friend identified the various bird sounds for me…chickadees, hummingbirds. Truly amazing! Prior to being implanted I could hear honks and squawks with my hearing aids but never the tweets/chirps of smaller birds.
My car is full of new sounds…the turn signal, buttons being pushed, the windshield wipers. Home is loaded with new sounds…the beep, beep, beep of the microwave announcing its contents are done, the dryer beeping to signal the clothes are dried, the creaking of a hinge as a door is opened or shut as well as the click of the bolt engaging. I hear the sound of our dog, Ruby, groaning as she stretches out on the floor as well as the jingle of her collar as she shakes herself.
The graph pictured above illustrates how much the CI opened up new sounds to me. Without any hearing aids I was classified profoundly impaired having roughly 5-7% hearing in both ears which led me to make the decision to do the CI. My last set of hearing aids amplified sounds to where I could hear a telephone ring, a dog bark, a piano being played as depicted on the graph. A gas leaf blower sounded very loud to me as my hearing aids amplified it to an uncomfortable level. Speech was comprehensible to me with my aids and lip reading in controlled settings. Background noise made it challenging to understand what was being said. I missed a tremendous amount but didn’t always realize it. I thought I was fairly high functioning for having such poor hearing.
The goal of a CI is to bring sound to the speech banana level. After all, human interaction is probably the most important aspect of hearing. As I wrote in my last blog, Don and I have been working hard daily to train my brain to comprehend speech with no lip reading. But thanks to the 22 contact points placed in the cochlea I now have the full spectrum of sound albeit electronic sound.
Thursday, February 28th, I returned to SacENT for my third MAPping appointment with James, my audiologist. I believe MAPping stands for Master Auditory Programming but I wouldn’t want to be quoted on that. MAPping has evolved from the acronym. What’s important is that my CI processor, the N7 (“Nevin”) is connected to their computer software directly so James can make adjustments. During these sessions I listen for the softest audible (threshold) and the loudest volume (comfort) my brain can tolerate. The goal is to reach a normal sound level without being overwhelmed. Then “Katie” Kanso, my off the ear processor, is programmed to match “Nevin”. I couldn’t be programmed at the level I am now on January 31st, the day I was activated or switched on because my brain would have been overwhelmed by sound. That’s why I saw James on February 12th for a second mapping and February 28 for a third mapping. With these adjustments, he was able to gradually lower the thresholds and increase the volume.
I was also fitted with a new state-of-the-art hearing aid in my non implanted ear which is compatible with my CI processors. Wow! What a team they make! James programmed it, then proceeded to set up two new programs for both devices allowing me to enable a cafe/restaurant setting and a telecoil setting. With these additions, I am able to tap into a hearing loop in church, a theater, or even a some movie theaters. The best part: all of it is managed from my iPhone. Modern technology at it finest! The second best part: I don’t have to return to SacENT to see James again until March 28th although I do like and respect him a lot!
Immediately after my appointment, Don and I went to lunch in a noisy restaurant. Right away, I put both devices on the cafe/restaurant setting and discovered it does indeed subdue background noise while allowing me to hear Don well. On Friday night we went to dinner at a popular, very noisy local Mexican restaurant and with that setting I could actually understand him better than he could me. We had a good laugh over that as Don has excellent hearing. Keep in mind I have three tools to help my brain comprehend speech…the CI processor, the hearing aid and lip reading. Trust me, I’m not just “hearing” with my two devices. The CI provides natural volume while the hearing aid provides balance to smooth out the electronic sound.
R2D2’s whistling is more subdued now with the hearing aid providing more clarity to what I’m hearing. I’ve been asked why do I hear R2D2 whistling. The short answer…the whistling represents the high frequency sounds I’ve never heard or not heard in many years due to gradually declining hearing loss. Because of the 22 contact points implanted in my cochlea, my brain has access to those sounds but has to make sense of them which takes time and training.
CI processor + Resound hearing aid + lip reading is indeed a mEARacle!
Another AMAZING feature is streaming TV to both ears using a TV streamer accessible to both devices from my iPhone. It’s crystal clear but I still need closed captioning at this point because I haven’t “mastered” sounds yet from my processor. I can also stream directly into both devices with phone calls from my iPhone. I spent an hour yesterday morning chatting on the phone with a girlfriend catching 90% of what she said. When I ended the call, I bawled! I haven’t heard on a phone without it being on speaker phone in over 10 years. It makes me feel connected again. Truth be told, I’ve cried tears of joy too many times to count!
As for brain training, Don and I are still working our way through Cochlear’s Communication Corner (the worksheets I talked about in my last posting) but they’re much more challenging and fun now as we actually have real “conversations”. I continue to “work” apps and listen to books on Audible while following along on my Nook without my hearing aid to force my brain to hear with the processor. It’s a process, but one that is already paying huge dividends for me.
This has been my world…no more as sounds have been unleashed for me!
Karma is getting back at me for the boring worksheets I assigned my students over the years. This is the kind of mindless drivel with which Don and I have been faithfully starting our day along with our morning coffee. Using an aural rehabilitation program called Communication Corner put together by Cochlear, the manufacturer of my processors, we spend 30-60 minutes per day on it. It’s my least favorite brain training activity but I totally see the purpose. Much like teaching children to read, one must be able to unlock/decode words to put it all together until it becomes second nature. We sit across from each other in our favorite chairs and I listen while he says the words and repeats one. The catch: Don covers his mouth so I can’t lip read forcing me to listen and make sense of what he’s saying. It’s challenging but getting easier every day. Frequently he has to repeat a word three/four times before it is comprehensible by my electronic ear. By the way, I wear no hearing aid in my other ear so I’m relying completely on the processor.
Now for bragging rights! Today we experienced a major breakthrough. Don read all 33 sets of words on the sheet shown below with his mouth covered and I, with no hesitation, repeated the correct word the first time with no repetitions. That’s progress and I’m only on day 16 since activation!
Success!
This is a small part of what I do most days. I’ve been spending three to five hours a day training my brain to hear. The other activities I do are much more fun but all of it is exhausting. I share my hearing with a gravelly Darth Vader voice while R2D2 is whistling away the entire time I’m wearing my processor. At home, I only wear the processor but I need the hearing aid as well when I go somewhere.
My favorite rehabilitation is listening to a book using Audible on my iPad while I follow along on my Nook. I get to combine a favorite pastime with rehab…how good is that??? Yes, Darth is reading and R2D2 is looking over his shoulder and whistling but I don’t care as I know they’ll eventually disappear. I used to be envious of friends chatting about how they listen to audiobooks in their car or while cooking, etc. but for obvious reasons I could never listen to them. Now they’re helping me learn to hear. Wow…modern technology! Streaming is a wonderful tool.
On my iPad I have several apps specifically designed for aural rehabilitation. However, my favorite app is one created for middle/high school English language learners called Listening to the News: Voice of America which I stream directly to my processor. There are 20 topics and each lesson gets progressively harder. First I listen to a topic related sentence. After that, I am allowed to view the sentence. I can repeat it over and over until I hear it. I’m now on the third topic and last night while working it, I discovered I was hearing words, phrases and whole sentences even before I looked at the written sentences. Hurray! The topics are actually interesting thank goodness.
Don and I play word games like I spy a clock (something in our living room), I’m thinking of a color, number, farm animal, foodstuff, occupations, etc. He always covers his mouth so I can’t lip read. He reads very simple children’s poetry with lots of rhyming/word patterns while I listen. Then, he repeats back what he says. He reads the poem to me first while I lip read then breaks it down line by line with his mouth covered. Sounds simple? It’s not. Anyhow, we’re finding lots of ways to make it fun. Practice. Patience. Perseverance.
I can’t tell you how much I love and am grateful for Don. Thank goodness he loves language and talking! Oh, and did I mention how much I’m enjoying my electronic ear???
Tuesday, February 12th we returned to SacENT for my second mapping with the audiologist, James. In a future blog I’ll explain what a mapping is but today I want to share my latest toy…the Kanso. Kanso is a Japanese zen principle meaning “simplicity or elimination of clutter.” Already I love my Kanso as it’s off my ear and not competing with the stem of my glasses for space. Remember, I’ve worn hearing aids every waking moment since age 27.
James activating my other processor, the KansoMy bulky N7 processor on the left with my Kanso on the right The quarter in the middle gives you size perspective. The magnet implanted in my head is about the size of a dime.
The Kanso is definitely going to be my go-to competitive bridge processor. To prevent the Kanso from falling off, the black clip attaches to whatever clothing I’m wearing. The line allows me to remove/replace my processor effortlessly while playing bridge. Believe me, R2D2’s continuous whistling interferes with my concentration while tiring me out in the process. I take it off and let it dangle. When I’m ready to wear it again I simply plop it back on my head. The beauty of it all…my hair completely covers it. Admittedly, my hair covers the N7 processor, too, but my hair tends to get caught in the wire attaching the processor to the magnet coil sticking straight out…no thanks.
Lest you think everything’s hunky dory all the time it’s not. I’m still battling the “exiting a rocking boat” syndrome. Sometimes the side of my head aches from wearing the N7. I’ve been activated 16 days as of today. I’ve fought feelings of resentment even anger that I had to spend MY precious time learning to hear. There are so many other things I’d like to be doing but right now brain training is my “job”. I get demoralized listening to a gravelly Darth Vader and especially R2D2. Sometimes I want to yank off the processor and throw it across the room. Reason prevails and I plug away at my new “job”. Twice I put the processor to bed in the afternoon and conveniently forgot about it. But I’ve got “Big Brother” looking over my shoulder as the audiologist knows exactly how many minutes a day I’m wearing it…😩…darn computers.
It’s a marathon not a sprint! I have to keep my ear on the prize…easy listening with comprehension.
Plethora of new gadgets, tools, batteries, chargers, cords and manuals
The good, the bad, the ugly.
The good: I’m finally feeling much better (surgery was 4 weeks ago)! My land legs have mostly returned…when tired I still occasionally experience the exiting a “rocking boat” syndrome. I’m no longer suffering mind-numbing exhaustion just “normal” tiredness. Best of all, I’m hearing better now with the N7 processor and my hearing aid in my right ear than I previously did with two hearing aids! Very exciting for me…will talk more about that in my next posting.
Following activation I decided to unload the tightly packed backpack sent home with me and my N7 processor. Wow! What am I supposed to do with all this? Where was I going to store everything in already filled to the brim cabinets, closets and drawers? Boxes, charging cords, manuals, carrying cases…my head was spinning. Don and I quickly decided we’d figure out one new “toy” each day.
The bad: the first problem we encountered upon getting home was we realized we had no idea how to turn on/off the N7 processor. The audiologist may have told us but he didn’t lead us through “guided practice”. The backpack hadn’t been unloaded yet so we had no idea there were manuals in it. Panic set in until I remembered Cochlear’s website had instructional manuals to download as well as You Tube videos we could watch. Frustration mounted as it turned out to be a 45 minute hunt for the information we needed with both of us searching on our respective iPads. We finally found what we needed but were quite unhappy with Cochlear and the audiologist by then. It’s not obvious either as one cannot just push an off/on button. No…it requires pressing a button and letting certain color lights blink off and on X number of times. Green for on, orange for off, blue for pairing…the blinking thing is maddening!
While searching for information I downloaded and printed out 47 pages of an 84 page N7 manual. Upon unloading the backpack I came across two manuals, a Quick Guide which is all we needed and the 84 page one…grrrrrrrrr. Why weren’t we handed the Quick Guide manual and told that was all we needed for now??? Being an organizational queen, I think Cochlear could use my input.
TV streamer…innocent looking tool
The Ugly: Because it was Super Bowl Sunday, we decided to set up the TV streamer sparing Don the “hair blowing back” syndrome he’d had to endure over the years of living with me. I’m not going to go into the details…let’s just say it was UGLY! We were not able to get it working using a Quick Guide, the TV streamer manual or just plain trying to figure it out on our own. Nada. It’s lucky it wasn’t thrown through the window! We’re saving it for a day when we can get technical support from Cochlear.
Mini Mic+2: my new love/hate relationship
The good, the bad and the ugly: The mini mic+2 has become my new best friend. At the same time I don’t like it. Why? It’s a wonderful gadget for streaming sound right to my processor. At home, I only wear my processor leaving my hearing aid out to train my brain to hear electronically. Don wears the mini mic when talking to me. I still need to lip read but it’s definitely working well for us.
So why don’t I like mini mic+2? It’s turned on through my iPhone and frequently doesn’t pair well. Ughhhhhh. We’ve easily spent 30 minutes more than once trying to get the darn gadget working. Slowly, we’re getting better at it. I’ve had my bridge partners wear it (very effective as it streams their voice right to my new “ear”) but I make sure it’s on and ready to go before I leave home. Bluetooth and streaming are wonderful tools but why do they need to be so complicated?!?!?!
As for the plethora of accompanying gadgets, tools, batteries, charging cords (something’s being charged in our household 24/7), and manuals, I managed to find a logical spot for everything. I did clean out a few drawers and one cabinet getting rid of long forgotten never used items in the process to make way for more “stuff”. Hopefully it’ll all get put to use!
Next installment: aural rehabilitation (training my brain to “hear”)
Hear Ye! Hear Ye! Musings from a Cochlear Implantee 