My ci journey

I am posting this in case the information can be helpful to anyone who is thinking about getting a cochlear implant. Keep in mind that this is the journey of one person, your experiences may be different.

My name is Ian MacGregor and this post will document my experience with a cochlear implant. I was diagnosed as profoundly deaf when I was 28 years old – in 1992. My hearing loss was assumed to be caused by prolonged exposure to noise when I served in the US Navy. I had worn different types of hearing aids for years but they didn’t help much due to my level of hearing loss. Traditional hearing aids made everything louder but they didn't help me understand what I was hearing - it was just louder noise.


What is a cochlear implant?

A cochlear implant (CI) is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing in both ears. Cochlear implants bypass the normal hearing process; they have a sound processor that resides on the outside of the skin (and generally worn behind the ear) which contains microphones, electronics, battery, and a coil which transmits a signal to the implant. The implant has a coil to receive signals, electronics, and an array of electrodes which is placed into the cochlea, which stimulate the cochlear nerve.


September 27, 2017

Last month I applied for a cochlear implant through the Listen For Life Center at Virginia Mason Hospital and today was my first visit with their audiology department.

I met with the audiologist and was given a thorough hearing test. After the test, my audiologist and I discussed my options and reasonable expectations regarding cochlear implants. It appears that my level of residual hearing, along with my experiences with traditional hearing aids, results in me being a good candidate for cochlear implantation. I was given a copy of my audiogram and a folder of information explaining cochlear implants.

The appointment was enjoyable and I learned quite a bit about how the human ear works and how our brain processes sound. Future appointments were made for a CI pre-implant evaluation. I was told that the upcoming evaluation would include a series of consultations and would likely last most of the day.

This begins my journey back into the hearing world after 25 years of living with deafness.


October 18, 2017

Today was filled with consultations in preparation for cochlear implantation. The audiologist wasn’t joking when she said the evaluation would likely last most of the day. I arrived at the hospital at 8:00 am and wasn’t released until almost 4:00 pm.

Meeting with the audiologist: I was given an in-depth hearing test with and without Phonak Naida hearing aids. This test was more exhaustive than the previous test. After the test, the audiologist ordered a Nucleus 7 cochlear implant system and a few accessories. We discussed, again, what I should expect from a cochlear implant system as well as the need for future appointments for testing and programming the system after implantation.

Meeting with radiology: A CT scan of my head. The surgery department needed pictures of my outer, middle and inner ear prior to surgery.

Meeting with the nurse: I received an intra-muscular injection for meningitis vaccine – this hospital requires this vaccination prior to cochlear implant surgery.

Meeting with the surgeon: The surgeon explained the procedure and answered all of my questions. Being that my hearing loss is mostly equal bilaterally, I was given a choice of which ear to implant – I chose my right ear.

Meeting with the surgery scheduler: Surgery was scheduled for Next month. I also received appointments for testing and programming of the system after implantation.

Everyone I have spoken with thus far has been friendly and efficient. The Listen For Life Center program at Virginia Mason appears to progress at a brisk pace.

So, next month, implant surgery and then testing and programming for the sound processor.


November 9, 2017

Surgery day has arrived. I’m nervous but am determined to see this through - I keep telliing myself "a warrior seeks that which others flee". I arrived for surgery early in the morning. After a short wait I was taken to pre-op where I changed into a hospital gown and placed my street clothes in a bag – I was told this bag would accompany me after surgery.

An IV was started and my surgeon arrived to explain the procedure and answer any question I had. I didn’t have any questions because I had spent the previous week scouring the internet for information and videos from others who had been through cochlear implantation. I highly recommend doing your own research because it will lay aside any fears you may have as well as inform you as to the different steps involved in cochlear implantation and what to expect.

I was then transferred to the operating room and asked if I was ready for a nap. A gas mask was placed over my mouth and nose and that was all I remember until waking up in the recovery room. After a short stay in the recovery room, I was transferred into my own room – the hospital insisted that I stay overnight because I had no one to take me home after surgery. I had assumed that, since this was outpatient surgery, I could walk home or ride the bus. It now appears that I grossly underestimated the effect that general anesthesia can have on a person, I was still groggy and in a lot of pain for several hours after surgery.

It seems that I have picked up a new package. Upon arrival in the recovery room, I was given a new backpack that contained all of the equipment and items necessary to operate and maintain a cochlear implant. This new backpack came directly from the Cochlear company and has their logo embroidered on the back.

The overnight stay in the hospital was enjoyable. The medical professionals who cared for me were friendly, caring people and time seemed to pass more quickly than I expected. The hospital food was great, it tasted like it was prepared in a restaurant rather than a hospital kitchen. I don’t think I would have made it without this awesome team of medical professionals. This hospital is amazing!

I’m safe at home now and am surprised to find that there is little pain and swelling behind my right ear. The headaches can be harsh, though, so remember to keep taking all prescribed medication.

Next week: cochlear implant activation, testing and programming. Stay tuned!


November 15, 2017

Today is the day! Today is the day that my cochlear implant gets activated. I have been deaf for 25 years and I didn’t know what to expect when my brain tried to process sound again. Hopefully, it wouldn’t be too overwhelming.

I arrived at the Audiology department and met with my interpreter. After a short wait I was greeted by a nurse and led to an examination room. The surgeon arrived and removed the Dermabond that covered the incision site – this hospital used Dermabond instead of sutures to close the incision site. The surgeon examined me and we discussed my experiences during the last week; there were no issues but I did notice that the tinnitus in my implanted ear has been drastically reduced! I was then led to the audiology department to begin CI activation.

The Audiologist unpacked and inventoried all of my equipment and then connected my sound processor to a computer to begin activation. We began with a series of beeps to determine volume comfort and then moved on to speech recognition. Everything sounded, for lack of a better term, robotic – which is apparently normal for this type of device. The Audiologist told me that the sound would become more normal over time as my brain gets used to processing the higher frequencies that I will be hearing from now on.

Part of the speech recognition involved the Audiologist talking in short sentences while having her mouth covered to prevent lip-reading. To my great surprise I was able to understand most of what she was saying and I wasn’t lip reading! I couldn’t believe this, I have been lip reading for the past 25 years and I’m finally getting a break from that error-prone exercise!

Everything went well, partly due to my habit of researching everything – I had spent the previous week reading everything on the Cochlear website as well as watching all of their videos, so I was well-informed when activation day arrived.

I’m home now, getting used to having this sound processor on my right ear, and have noticed something; my laptop keys “click” when pressed. Does that bother me? Not a bit!

Next week: more testing and programming. Stay tuned!


November 17, 2017

I’ve noticed many different sounds since my cochlear implant was activated two days ago. My microwave oven beeps when it is finished cooking. My laptop keys and mouse keys click when they’re pressed. My wristwatch has an alarm that I don’t remember ever setting. Running water sounds like static.

Following conversations in person and on video is so much easier now! I still need to lip read a bit but I’m learning to rely primarily on the audible information provided by my CI rather than solely on lip reading. Lip reading requires a lot of guess work and my CI seems to remove most of that. I don’t seem to be able to enjoy music yet, but that is to be expected since music is such a dynamic signal. Everything should improve in time and I’m quite happy with everything so far.

I don't mind telling you that I was scared out of my mind on surgery day, but I am now glad I went through with it because the benefits of a cochlear implant keep coming.
 
Last edited:

LoveBlue

Well-Known Member
Running water sounds like static.
Tell your brain that it's running water and it will start to sound like running water. That's what I did within a couple of days of being activated. Then I said, "good going, brain". Felt like I was talking to a baby/toddler. :D

Any time you don't know what a sound is, do some detective work. Are you touching/moving something (like your keyboard)? I think one buzzing sound I was hearing was my clothes brushing against something. Just today, after having been activated 9 months, I was trying to figure out a sound. It was my bed squeaking as I was leaning into it and off it while folding clothes. Took me a few minutes to figure it out.
 
Tell your brain that it's running water and it will start to sound like running water. That's what I did within a couple of days of being activated. Then I said, "good going, brain". Felt like I was talking to a baby/toddler. :D

Any time you don't know what a sound is, do some detective work. Are you touching/moving something (like your keyboard)? I think one buzzing sound I was hearing was my clothes brushing against something. Just today, after having been activated 9 months, I was trying to figure out a sound. It was my bed squeaking as I was leaning into it and off it while folding clothes. Took me a few minutes to figure it out.
Oh, yes, I investigate every sound so I can put a mental label on it. That way my brain knows what to expect from that item/activity next time.

For me, it was my digital wristwatch. I kept hearing a beeping at the same time each day and went through my house looking for something that would likely have a repeating pattern. Finally, I figured out it was my wristwatch, it seems the alarm was set at the factory and has been going off daily for the past year and I never knew it since my CI was only activated a few days ago.

The fun never ends :)
 

cdmeggers

Well-Known Member
LOL! The watch, I had that same experience. I never set the alarm on the watch or anything, so I have no idea how it got turned on but one day I started hearing this beeping sound. Went around the apartment, checked the smoke detectors and anything else that might beep. Beep disappeared, only to reappear again next day. Went on for a few days before I finally realized it was my watch's alarm going off. Oy. The buttons on my watch must've been pressed somehow to activate the alarm, perhaps in my sleep or something.

Always fun to go hunting for sounds to figure out what is causing those sounds.
 
It is now 11 days after having my cochlear implant activated. I was sitting at my computer and heard what sounded like the crumpling of paper. It was a new sound and I wanted to identify it so I walked around my house looking for the source of the sound.

I couldn’t find the source of the sound so I thought it might be outside the house. That was when I opened my front door and the sound became louder – it was raining very hard outside. I can hear the rain! I can actually hear the rain after 25 years. This cochlear implant is amazing!
 

zeefour

Active Member
I am posting this in case the information can be helpful to anyone who is thinking about getting a cochlear implant. Keep in mind that this is the journey of one person, your experiences may be different.

My name is Ian MacGregor and this post will document my experience with a cochlear implant. I was diagnosed as profoundly deaf when I was 28 years old – in 1992. My hearing loss was assumed to be caused by prolonged exposure to noise when I served in the US Navy. I had worn different types of hearing aids for years but they didn’t help much due to my level of hearing loss. Traditional hearing aids made everything louder but they didn't help me understand what I was hearing - it was just louder noise.


What is a cochlear implant?

A cochlear implant (CI) is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing in both ears. Cochlear implants bypass the normal hearing process; they have a sound processor that resides on the outside of the skin (and generally worn behind the ear) which contains microphones, electronics, battery, and a coil which transmits a signal to the implant. The implant has a coil to receive signals, electronics, and an array of electrodes which is placed into the cochlea, which stimulate the cochlear nerve.


September 27, 2017

Last month I applied for a cochlear implant through the Listen For Life Center at Virginia Mason Hospital and today was my first visit with their audiology department.

I met with the audiologist and was given a thorough hearing test. After the test, my audiologist and I discussed my options and reasonable expectations regarding cochlear implants. It appears that my level of residual hearing, along with my experiences with traditional hearing aids, results in me being a good candidate for cochlear implantation. I was given a copy of my audiogram and a folder of information explaining cochlear implants.

The appointment was enjoyable and I learned quite a bit about how the human ear works and how our brain processes sound. Future appointments were made for a CI pre-implant evaluation. I was told that the upcoming evaluation would include a series of consultations and would likely last most of the day.

This begins my journey back into the hearing world after 25 years of living with deafness.


October 18, 2017

Today was filled with consultations in preparation for cochlear implantation. The audiologist wasn’t joking when she said the evaluation would likely last most of the day. I arrived at the hospital at 8:00 am and wasn’t released until almost 4:00 pm.

Meeting with the audiologist: I was given an in-depth hearing test with and without Phonak Naida hearing aids. This test was more exhaustive than the previous test. After the test, the audiologist ordered a Nucleus 7 cochlear implant system and a few accessories. We discussed, again, what I should expect from a cochlear implant system as well as the need for future appointments for testing and programming the system after implantation.

Meeting with radiology: A CT scan of my head. The surgery department needed pictures of my outer, middle and inner ear prior to surgery.

Meeting with the nurse: I received an intra-muscular injection for meningitis vaccine – this hospital requires this vaccination prior to cochlear implant surgery.

Meeting with the surgeon: The surgeon explained the procedure and answered all of my questions. Being that my hearing loss is mostly equal bilaterally, I was given a choice of which ear to implant – I chose my right ear.

Meeting with the surgery scheduler: Surgery was scheduled for Next month. I also received appointments for testing and programming of the system after implantation.

Everyone I have spoken with thus far has been friendly and efficient. The Listen For Life Center program at Virginia Mason appears to progress at a brisk pace.

So, next month, implant surgery and then testing and programming for the sound processor.


November 9, 2017

Surgery day has arrived. I’m nervous but am determined to see this through - I keep telliing myself "a warrior seeks that which others flee". I arrived for surgery early in the morning. After a short wait I was taken to pre-op where I changed into a hospital gown and placed my street clothes in a bag – I was told this bag would accompany me after surgery.

An IV was started and my surgeon arrived to explain the procedure and answer any question I had. I didn’t have any questions because I had spent the previous week scouring the internet for information and videos from others who had been through cochlear implantation. I highly recommend doing your own research because it will lay aside any fears you may have as well as inform you as to the different steps involved in cochlear implantation and what to expect.

I was then transferred to the operating room and asked if I was ready for a nap. A gas mask was placed over my mouth and nose and that was all I remember until waking up in the recovery room. After a short stay in the recovery room, I was transferred into my own room – the hospital insisted that I stay overnight because I had no one to take me home after surgery. I had assumed that, since this was outpatient surgery, I could walk home or ride the bus. It now appears that I grossly underestimated the effect that general anesthesia can have on a person, I was still groggy and in a lot of pain for several hours after surgery.

It seems that I have picked up a new package. Upon arrival in the recovery room, I was given a new backpack that contained all of the equipment and items necessary to operate and maintain a cochlear implant. This new backpack came directly from the Cochlear company and has their logo embroidered on the back.

The overnight stay in the hospital was enjoyable. The medical professionals who cared for me were friendly, caring people and time seemed to pass more quickly than I expected. The hospital food was great, it tasted like it was prepared in a restaurant rather than a hospital kitchen. I don’t think I would have made it without this awesome team of medical professionals. This hospital is amazing!

I’m safe at home now and am surprised to find that there is little pain and swelling behind my right ear. The headaches can be harsh, though, so remember to keep taking all prescribed medication.

Next week: cochlear implant activation, testing and programming. Stay tuned!


November 15, 2017

Today is the day! Today is the day that my cochlear implant gets activated. I have been deaf for 25 years and I didn’t know what to expect when my brain tried to process sound again. Hopefully, it wouldn’t be too overwhelming.

I arrived at the Audiology department and met with my interpreter. After a short wait I was greeted by a nurse and led to an examination room. The surgeon arrived and removed the Dermabond that covered the incision site – this hospital used Dermabond instead of sutures to close the incision site. The surgeon examined me and we discussed my experiences during the last week; there were no issues but I did notice that the tinnitus in my implanted ear has been drastically reduced! I was then led to the audiology department to begin CI activation.

The Audiologist unpacked and inventoried all of my equipment and then connected my sound processor to a computer to begin activation. We began with a series of beeps to determine volume comfort and then moved on to speech recognition. Everything sounded, for lack of a better term, robotic – which is apparently normal for this type of device. The Audiologist told me that the sound would become more normal over time as my brain gets used to processing the higher frequencies that I will be hearing from now on.

Part of the speech recognition involved the Audiologist talking in short sentences while having her mouth covered to prevent lip-reading. To my great surprise I was able to understand most of what she was saying and I wasn’t lip reading! I couldn’t believe this, I have been lip reading for the past 25 years and I’m finally getting a break from that error-prone exercise!

Everything went well, partly due to my habit of researching everything – I had spent the previous week reading everything on the Cochlear website as well as watching all of their videos, so I was well-informed when activation day arrived.

I’m home now, getting used to having this sound processor on my right ear, and have noticed something; my laptop keys “click” when pressed. Does that bother me? Not a bit!

Next week: more testing and programming. Stay tuned!


November 17, 2017

I’ve noticed many different sounds since my cochlear implant was activated two days ago. My microwave oven beeps when it is finished cooking. My laptop keys and mouse keys click when they’re pressed. My wristwatch has an alarm that I don’t remember ever setting. Running water sounds like static.

Following conversations in person and on video is so much easier now! I still need to lip read a bit but I’m learning to rely primarily on the audible information provided by my CI rather than solely on lip reading. Lip reading requires a lot of guess work and my CI seems to remove most of that. I don’t seem to be able to enjoy music yet, but that is to be expected since music is such a dynamic signal. Everything should improve in time and I’m quite happy with everything so far.

I don't mind telling you that I was scared out of my mind on surgery day, but I am now glad I went through with it because the benefits of a cochlear implant keep coming.
Thank you so much for sharing your story! I got my BAHA when I was 16 after losing my hearing at age 6. It wasn't an identical experience but it was close.
 
Today marks the end of my first full week of using a cochlear implant, it was also my first post-activation programming session. It appears that I am adjusting to my CI quickly and things are going well.

The first thing my Audiologist did today was run a diagnostic because I dropped my sound processor on a hard tile floor last week. There was no apparent damage and my Audiologist began a new programming session. This session was similar to the previous session to determine my comfort level with different volumes.

After the programming session, we discussed device retention. The Cochlear company sells an ear mold adapter that allows the user to attach a normal hearing aid ear mold to the sound processor to help secure the device in place. My Audiologist also suggested using one of my previous digital hearing aids in my left ear to work in tandem with the CI in my right ear. So, I'll need to take my digital hearing aids with to my next appointment so I can have both ear molds fitted at the same time.

We ended the appointment discussing the possibility of another CI, this one would be for my left ear leaving me with bilateral CI's. As much as I dreaded the first surgery earlier this month, I'm actually looking forward to doing this all over again with my left ear. This hospital requires a 6 month "resting" period between implants, so I'll have to wait until May of next year for the left ear to be implanted.

My Audiologist stated that I am progressing quickly and that she is happy with the way everything is going. I am very happy that I decided to do this, after 25 years of profound deafness, this is something that I should have done long ago. But, better late than never!

My journey continues...
 
Last edited:

avenable

New Member
Hello Ian,
Thanks for sharing your experience! The level of functional hearing that you've recovered is fantastic. I've been going through the process of preparing for implantation and like you, am currently scared out of my mind. Especially after just watching a video feed of the surgical process (live surgery).

One thing that surprised me in your experience was the interval of time before activation. They only waited one week? I thought that ~4 weeks before activation was pretty standard (unless I've been misunderstanding).

Cheers,
Aaron
 
Hello Ian,
Thanks for sharing your experience! The level of functional hearing that you've recovered is fantastic. I've been going through the process of preparing for implantation and like you, am currently scared out of my mind. Especially after just watching a video feed of the surgical process (live surgery).

One thing that surprised me in your experience was the interval of time before activation. They only waited one week? I thought that ~4 weeks before activation was pretty standard (unless I've been misunderstanding).

Cheers,
Aaron
Hi Aaron. I was scared out of my mind too, being that it was my first surgery, but it was fear for nothing.. I don't even remember falling asleep. They put the mask over my face and the next thing I remember is waking up in the recovery room after the surgery was over. It seemed like it was all over in an instant.

One week after surgery, the surgeon examined me and said I was ready for activation. I'm a runner, I lift weights, I have a very healthy diet so I heal rather quickly. The pre-activation waiting period may be longer if the patient isn't as healthy as I was.

Trust me, there is nothing to fear, it will be over before you know it!
 

LoveBlue

Well-Known Member
I think the usual waiting time is 3-4 weeks, but I've read where a lot of people have shorter waits. Then, maybe we're just not hearing all the "long" waits. Mine was 5 weeks - but I think my audiologist was out of the office for the last two weeks, so mine might have been only 3-4 weeks if she had been in. I'm in good health, so that was not the reason for the long wait. I think the wait is clinic specific. Some like to make you wait, some like to do it quickly. I'm glad I had to wait because that gave my head time to heal and the swelling to go down.
 
I think the usual waiting time is 3-4 weeks, but I've read where a lot of people have shorter waits. Then, maybe we're just not hearing all the "long" waits. Mine was 5 weeks - but I think my audiologist was out of the office for the last two weeks, so mine might have been only 3-4 weeks if she had been in. I'm in good health, so that was not the reason for the long wait. I think the wait is clinic specific. Some like to make you wait, some like to do it quickly. I'm glad I had to wait because that gave my head time to heal and the swelling to go down.
You know, I think you're right. I was given an information packet on my first visit to this hospital 6 weeks prior to surgery. My information packet states that the wait between surgery and activation is "typically 1 - 2 weeks". So, yeah it must be clinic-specific.
 
Why did you choose the brand that you got?
I chose Cochlear for the following reasons:
  • Functionality: The Nucleus 7 CI has 22 channels, more channels than the competition and long-term (+10 years) expectations are higher
  • Interaction: The Cochlear remote control is smaller, and made better, and provides feedback via the included LCD display
  • Appearance: The Cochlear Nucleus 7 sound processor is aesthetically pleasing, the other two look "cheap" in my opinion
  • Service: The other two companies never replied when I contacted them prior to implantation. The Cochlear company replied the next day and they continue to stay in touch with me "after-the-sale"
  • Cochlear was the first company to do this (1970's), they have more experience
 

cdmeggers

Well-Known Member
One thing that surprised me in your experience was the interval of time before activation. They only waited one week? I thought that ~4 weeks before activation was pretty standard (unless I've been misunderstanding).
It varies from surgeon to surgeon. Some prefer having their patients wait up to 4 weeks before activation, others are fine with doing activation sooner. Both of my activations took place not quite 2 weeks after surgery (13 days with left ear, 11 or 12 days with right). I even know of someone online who was activated like 1 or 2 days after surgery.
 

Beowulf

Well-Known Member
Premium Member
A very dignified and intelligent response from a CI user to the whole world, and I wonder, who is listening?
 
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