Writing My Cochlear Implant Journey started as a documentation of what I went through in the process of being Implanted with the Cochlear device and fitted with the Cochlear speech processor.
As I progressed I found that there is not any real instruction manual given before starting out so decided to try to add more information.
My hope is that my story may help others understand the process, what to expect and how they may be affected on their own cochlear implant journey. Please feel free to pass it on to anyone that may benefit.
My Journey is long, sometimes very rough but it is A Dream Coming true. It is now a lifelong Journey.
I am a 65-year-old man who lives in Broken Hill, 500km from Adelaide and 1200km from Sydney.
A little about my past hearing
Living in Broken Hill, I worked underground mining in a very noisy and humid environment that wasn’t always conducive to earplugs or earmuffs and so I was doing damage to my hearing.
In the 1980’s I went to see an ENT Specialist about my right ear. He ordered X-rays that showed calcification to the middle ear bones that he said can be fixed at any time so when my right ear stopped hearing I blamed it on the calcification & thought I can get that fixed later.
In 1999 my wife and I went on a holiday to Cairns. Driving along it seemed as if the car windows were down with the vibrations I was hearing so on my return home I went to my doctor who sent me off to the ENT Specialist in Adelaide.
The specialist had scans done and diagnosed a Cholesteatoma in my right ear that had eaten through my skull into the brain cavity and was now pushing my brain up. An urgent operation was needed to remove the problem.
During the operation, a Trans Medial Petrosectomy was performed which resulted in my middle ear being ruined; the balance organs were destroyed but the Cochlea was still intact.
It took years to get over the palsy that was a direct result of the operation. The ENT specialist also diagnosed Industrial Hearing loss in my left ear. After more hearing tests I was fitted with a hearing aid.
I coped very well with my hearing and was involved in community projects.
The start of my Cochlear Implant Journey
In 2010 I attended a Hearing in the Hill conference where I met Professor WPR Gibson from the Sydney Cochlear Implant Centre. The Prof. gave a lecture on implants and introduced 7 implantees who mixed socially and described their experiences. I thought, this is for me, I want one.
In 2013 I went to the Sydney Cochlear Implant Centre to find out more. Professor Gibson told me that it was too dangerous to implant the right ear as the facial nerve had been exposed in 5 places. He would not implant the left ear as the hearing was still too good.
My hopes dashed
I came home disappointed but still comfortable that I could cope. I was under the care of Australian Hearing who kept my hearing aid adjusted and supplied batteries. But then came a rapid deterioration in my hearing and I was not coping well.
A new more powerful hearing aid was supplied but I was still having problems. On one visit to the Australian Hearing Audiologist, I said how frustrated I was that I could not cope. A hearing test was done and the Audiologist sent a letter to my GP recommending a visit to my ENT Specialist. I cannot fault the care and assistance I have received from the Australian Hearing Staff in Broken Hill.
At this point, I could no longer communicate with family and friends and would dismiss or avoid old workmates. And my wife was a constant cause of frustration because I couldn’t communicate. I had become a Facebook & forum junkie as you didn’t need to be able to hear there.
Hearing tests were done at an ENT Surgeon appointment at Memorial Hospital in Adelaide. On seeing the specialist I was told that my hearing was so bad she was referring me to the South Australian Cochlear Implant Centre (SACIC) for assessment.
Can I finally have a cochlear implant and communicate again?
The specialist ordered CAT Scans whilst I was in Adelaide but I had to wait three months due to various factors. At SACIC I met an Audiologist who conducted tests and explained the procedures. Finally! She said I qualify for an implant.
We discussed my options and it was explained that it may benefit me to get my left ear implanted due to the fact that I had not heard from my right ear for about 20 years and that Professor Gibson had deemed it too dangerous to implant the right ear.
That same day I went to see ENT Surgeon Michael Schultz who is also a SACIC Surgeon. On reading the scans, Michael said he could implant the right ear. The worst ear was the Surgeons preference. Michael wanted MRI Scans so he could inspect what was left of my cochlea and make sure an Implant would be viable.
I was so excited that I was getting somewhere, and that I might be able to communicate again. On the 26th of July 2017, I was admitted to Memorial Hospital for my Implant operation. The hardest part was waiting 5 hours to go into the theatre.
My cochlear implant journey is finally in full swing
It’s a very busy hospital with seven operating theatres working around the clock. At 5 pm I was taken into the theatre for my procedure. I don’t know how long the operation took but my wife said the Surgeon phoned her at 7.30 to say he had implanted my right ear and I was progressing well.
Due to possible facial nerve problems associated with my previous operation to remove the Cholesteatoma, I was taken to the Critical Care Ward. On waking, I was given very good care by the most friendly team of nurses you could ever meet. Nothing was too much trouble for them.
I was up to the toilet 4 times during the night and had to be disconnected from the monitors and drip each time. I suffered no dizziness, very little pain, no sickness but a fair bit of discomfort.
On Thursday morning the Surgeon gave me permission to leave the hospital after having X-rays taken of the Implant. Sitting in the Radiology department a very loud hum went through my head. Immediately after I could hear what was going on around me.
My theory is that the Implant excited the Auditory nerve and woke that part of my brain.
I was discharged from the hospital to return to our accommodation. On Friday we returned to Broken Hill by car. On 3rd August, I saw the Surgeon for a Post Op check-up and the staples were removed. Much more comfortable now.
A hearing test showed my hearing had returned to the low level before the operation.
I have several switch-on appointments of 60-90 minutes duration, over a period of 4 weeks to foster the best hearing outcomes during this early period and to support in adapting to electrical stimulation.
What should I expect?
The SACIC Audiologists have tried to keep my expectations low so that I am not overly depressed if I cannot hear for some time. I want to get my life back and enjoy music, nature and most of all my Family.
SACIC have contacted me with various options for fitting including the Cochlear Kanso and Nucleus 7 speech processors. I have opted for the remote Kanso at this stage. It is now two weeks since my Implant Operation. The incision has flattened out and the scar is hardly visible. My scalp where the device is located is only a little tender but I can rub my head without pain.
I am getting bouts of tinnitus after sleeping but the hearing aid in my left ear seems to overcome that. I can still feel the “ buzzing “ though.
My cochlear implant journey – switch on and mapping
South Australian Cochlear Implant Centre Switch on & Mapping session 1
An Audiologist explained the procedure and then did a test to find out how many electrodes were working on the implant. All 22 were working.
The first step was to fit the right strength magnet to the speech processor. Too strong and you get sores where the magnet sits. Too soft and the speech processor falls off. Then my input levels were set.
First, we went through the sounds to find the lower levels that I could hear. The next step was the upper levels that I am comfortable with. The Audiologist tested different sounds to make sure it was comfortable for me. Then we had the big occasion of switching the processor on for me.
A JUMBLED NOISE was my thoughts. As we chatted I could understand speech through the pops and whistles. After about 5 minutes I was chatting with the Audiologist, it wasn’t clear but I could understand her. My voice was very loud.
A safety cord and hair clip were fitted to the Kanso. The drive after the appointment was full of surprises with the blinker sound clicking away and a strange whistle that I kept hearing. It was us breathing.
During the afternoon we went for a walk just hearing the passing cars and birds. In the evening I sat outside with a glass or two of wine identifying sounds and birds. The next morning on fitting the processor I found my voice to be very clear. Having the hearing aid in my left ear is helping with conversation. My wife commented that the volume of my voice when talking had dropped.
My cochlear implant journey – mapping session 2
The audiologist asked about how I was handling the extra sounds etc. We then went through the volume adjustments once more and set levels that are comfortable for me. Doing word recognition tests and common sentences was a breeze with only one
I have been given a remote control to adjust the volume and programs of the speech processor. I was then sent out to get used to the new sounds. Now I am hearing a lot of higher pitches and things like paper and plastic bags rustling. I can now hear the sound of the car through the implant.
That afternoon we saw the Surgeon who was pleased with my progress. He wants to check on me in about 6 weeks. It gets better with time as your brain adjusts to new sounds. I have set the higher notes too loud and was getting too much volume from simple things like a spoon stirring tea and a lot of SSSSSSSSSSSSSSS.
My cochlear implant journey – mapping session 3
We went through the lower sound input levels and then the higher acceptable limits. This time I set the higher notes a bit lower and now more comfortable. I now have three programs on the remote control:
- normal use
- noisy environments like shopping centres
- one on one conversation in a restaurant or coffee shop where I can turn rear
microphone off to cut background noise.
I am understanding music better and find the TV is clearer although without a hearing aid in my left ear I am getting a lot of ghosting echo. Identifying birds by sound is easy even though it is not crisp & clear yet.
I now have a few days until my next mapping session so I am hoping it will improve further before then. It is now only 5 days since switching on and I am very happy with my progress.
We went to friends for dinner on Friday night. Eight sat around the table and I followed the conversation and communication was easy. Saturday night we sat down to a football match on TV. I could follow most of the commentary.
Sunday night’s game was different and I could not follow commentary with different TV and surround sound coupled with crowd noise.
My cochlear implant journey – mapping session 4
We went through the range of notes for the lowest input I could hear and then the maximum I could stand. I pumped up the volume. I am now hearing a lot more of the normal sounds. TV is clearer, birds are loud & music is getting much better.
My cochlear implant journey – mapping session 5
Back in the SACIC rooms I was once again tested by the Audiologist for the lowest sounds and then the highest sounds. We discussed the fact that I had set the volumes too high and proceeded to lower input levels of higher notes and increased a few of the lower notes. I only missed one word on my test on sentences.
The audiologist was amazed at my progress just a week after the initial switch on so gave me another program for music and I am now hearing much better. Birds are now clearer and I am understanding TV much better. It seems as if my brain resets to sound overnight with clearer hearing at fitting the Kanso speech processor in the mornings. We have now returned home to Broken Hill for a week before we return for another mapping session.
We have hundreds of sparrows and I think all have a different chirp. Today I am finding the input very loud and the wind noise in microphones driving me crazy.
Now 13 days since the initial switch-on
This morning I had trouble with the Telecoil switching on from a button press? Not long after I got the two beeps (Change batteries). All was good after a quick change. This morning I heard Battery Clock ticking. Blackbird singing is not really clear but easily recognised.
Day 15 after the initial switch-on
I had to change batteries again at 12 pm last night. It is very windy in Broken Hill today and I am being tested. My wife & I went on business & I had trouble in Office. We went outside and the street noise was terrible.
At home I found the cars in the street outside the home were very loud so I turned the hearing aid in my left ear down 5 steps. That was more comfortable but I was missing out on my wife’s return home.
Sitting outside I’m getting a strange BEEP. I have no idea what it is yet but there are about 15 Galahs in a tree up the street. I have sent Cochlear Australia a suggestion for a case to carry remote control, batteries & screwdriver.
Day 16 after Initial Switch-on
I have been hearing impaired for so long, I don’t know what normal sound volume is. I can hear my boots on the carpet, cat licking its fur and cars half a block away. When I turn the hearing aid on, I can hear it playing the turn on tune.
I left my hearing aid out this morning for a couple of hours. Missing bass tones.
Day 17 after initial switch-on
I went for a drive in the car and put my music CD on. I could hear the songs very clearly and sang along. YAAAY.
More time this morning with no hearing aid. Without it, I am getting ghosting echoes but I think it is improving.
My cochlear implant journey – the Final Mapping session
We did the tests and did minor adjustments to some of the mid notes. Raising a couple of the lower notes has given me a better balance with my hearing aid. The audiologist was very happy with my test scores.
I am very happy with the implant volume and hearing and can now leave the hearing aid out but it does help with lower tones. I will stop writing the story at this point as it’s now a lifelong journey. You will hear new sounds as you go and your brain needs to learn what it is you are hearing.
Every recognised sound is another milestone.
Will I go with Bi-lateral Implants?
I will not even consider it for the next 18 months to allow this implant to be fully tuned. Then I will look at all the facts as given by Australian Hearing Audiologists, ENT Surgeon Michael Schultz, SACIC and Cochlear Australia.
Money – what did it all cost
Thanks to Medicare, Bupa and our sickness fund most of the expenses were covered. Being a prosthetic aid, the device cost is covered by health funds. If you are a pensioner, contact Centrelink to find out if you are eligible for Medicare Safetynet.
Don’t be scared to ask how much it will cost & if there are any reimbursements you may qualify for.
Problems – what did I find wrong with the Kanso?
The Kanso uses round batteries that only last two days. It is a must to carry spare batteries and a small screwdriver to unlock the battery compartment with you. I am using a clip lock hearing aid case with 4 Kanso Batteries, Screwdriver and some hearing aid batteries. Cochlear could consider an accessory to do this.
Wind noise in Microphones is a problem but the scan function built-in should reduce
it to acceptable levels. I can no longer wear my wide-brimmed hat as the rim pushes the Kanso off.
I found Baseball caps in K Mart for $5 that fit over the Kanso and hide the fact that I am wearing one. You can get other caps with mesh sides if you think the cap may interfere with what you can hear. You may also get a bandana that will do the job.
For those not blessed with much hair, the hair clip is useless. You can use a collar clip that will stop you from losing your speech processor. Cochlear has a headband accessory that will retain your Kanso during sport https://store.mycochlear.com/store/index.php/aub2c/cochlear-implants/kanso/cochlear-headband-apac.html
In closing My Cochlear Implant Journey I must thank those responsible for the Journey.
My Wife – we have gone through very trying and frustrating times before the implant. To my astonishment, Maxine handled everything in her stride. She had to talk to doctors, make bookings and even drive 500 km home after my operation.
Since my switch-on, our lives have changed and we have a renewed marriage. Thank You.
My Family – to all those who I couldn’t converse with and seemed to ignore, I hear you now. Thank You for still being here.
Australian Hearing Staff – Charyse from Adelaide, thank you for your counselling. Anthony, driver of the Hearing Bus from Adelaide, thank you for your assistance. Sharon, Rosanna and Alesia from Broken Hill clinic, I thank you for your tests, assistance and support.
ENT Surgeons – Dr Alethea Grobler, Thank you for your care and referral. Dr Michael Schultz, thank you for your ability as a Top Surgeon and humour.
The Girls – Audiologist, Nurse and Office support staff. Without your input, this implant success could not happen. I thank each and every one of you.
South Australian Cochlear Implant Centre (SACIC) – these lovely people operate as a team and do not like to be recognised singularly. As audiologists and office support, I thank Nina, Caren, Kristan, Fleur, Alli and Michelle for your professionalism, care and humour. I know I stretched your limits but am sure that we all enjoyed my visits.
I know I did.
Did I mention My Wife? Thank you, Maxi.