Mysteries So Bright

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NOTE: Rechargeable Battery Life -In the early days of this diary, I reported that the MedEl Rechargeable battery only lasted 4-5 hours.  That was wrong.  They regularly last 8 or so hours, all 3 that are sent with the CI processor.  I think the first time, it was after they had been charged and set aside for a week or more.

Here is a date index of the pages in this diary:

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
April 13, 2020 – 29th Month Update

Note: the details in this diary are probably only of interest to those that may be getting the surgery in the future.  I am writing all of my impressions to help remove any fears that those persons might be experiencing.  I found lots of stories of how well the implants work after the recovery and after all the therapy of learning to hear again, but little about the details of the days right after the surgery.

The Surgery
December 5, 2017, 5:00 A.M. – report to VCU for surgery – kept overnight – huge bandage on head – little sleep through the night.

December 6, 2017 – the doctors removed the bandage and said it looked good – the stitches are internal ones that will dissolve – arrived back home mid-morning.

December 7, 2017 – after a good night’s sleep I start my diary.

The cochlear implant surgery was successful, the doctors told me – they actually activated the internal part while I was still unconscious, watching the EEG (?) scan – and said it performed like it should.  Anyway, I have a lopsided right side of my head – the ear is swollen and sticking out in some kind of unsightly salute. And the area around the ear and for a few inches above is also swollen.  That will all go away (so they say!).  😎

         Photo of the incision (ugly)

[Note added 12/2018: the incision scar is practically invisible now]

But all the surgery was done through a incision behind my ear – no incision up on the side of the head where the inside flat disc is imbedded under the skin. This is a magnetized disc, about 1.25 inches (3 cm) in diameter to which the outside attachment will stick magnetically. The inside and outside units will communicate through electric-magnetic waves.  And also, the electrical energy for the internal unit will be powered from the outside through that method. There are no batteries inside my head to be replaced.  Isn’t physics wonderful?!!

However the external unit will not be “attached” until Jan. 4 – silence in that ear till then. Actually, when the surgery internal fluids drain, I should have some residual hearing, and can wear my hearing aid for that ear and hear a little bit, I hope.  The main consequence right now is that I have absolutely no clue of the direction of sound – an important need for looking at who is speaking to you.

By the way, the tinnitus is undiminished – still loud, and new occasional sounds are being caused because of the internal probe that has been inserted into the spiraling cochlear channel.  The ENT folks predicted that the residual hearing will probably be 20 dB down from my previous level.  (I was already 40-50 dB down from healthy ears in my best frequencies – much worse in the upper frequencies), but even a little bit will help detect direction of the sound.

They kept me overnight, but I got very little sleep both Monday night at home (anticipating the 4:15 a.m. alarm, hoping I would hear it), and Tuesday night at VCU Hospital.  Leslie was also away Sunday and Monday night at St. Mary’s Hospital with an upper GI infection, with awful pains – we called 911 Sunday evening to get her there.  And she got home Tuesday afternoon, and couldn’t sleep that night, probably because she was concerned about me.  She is doing well in recovery. So it’s been a crazy few days here.

The Lord hovered over us, and the saints have rallied and met all our needs, and are bringing food.  We got good sleep last night (Wednesday night) – Leslie is still in bed (9 a.m.). When I wrote the friends that I would drive myself into the VCU hospital at 5 A.M. Tuesday morning, one of them said she would pick me up and take me so I wouldn’t have the complication of parking then trying to get that car home.  I had thought, well she probably gets up that early everyday, but, no, she goes to her job between 8 and 9.

That was such an outpouring of love.  A brother had also volunteered to do it but I had already accepted the sister’s offer.  The Lord fills us with His grace and love with which we can bless others, and that brings praise to our hearts.  Lord, we praise You and bless You – “You are a good, good Father – that’s Who You are;  And we are loved by You, that’s who we are”!  Amen.

It looks like I have started a diary here, so I will keep adding to the narrative as the days go by.  Someone asked me to do that, and maybe it will encourage others to have the operation.

Assuming the ordeal is successful, and my hearing will be so much better (as others have experienced it), I can add to the testimonies that encouraged me to go ahead with it, and be able to ask, as so many others have, “Why didn’t I get it done sooner?”

December 5, 2017 – The Surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
April 13, 2020 – 29th Month Update
September 6, 2020 – 33th Month Update
Appendix: Home Hearing Test

December 13, 2017 – 9 Days after surgery

Notes: the frequent, insistent, in the background, brain- generated sounds are fascinating.  There is, as I have mentioned, the high pitch tinnitus which is just like the one on my left ear.

Then there the 2-tone sequence which I have simulated in this clip – before the operation it would occur every few months for a few hours, almost always with the same 2 tones.  And it would “play” for about 4 seconds at a time, with about a 10-30 second break between the “songs”.  But for this past week, when they are present, the “song” is much shorter and repeated without a break between.  In addition, within a day or 2 of being back home, other tones were added, especially in the lower range.

Today (Dec. 13) I hear almost like a brass band in the far distance playing random staccato notes – like a tuba followed by a baritone home toot. The pitches are like a low  F below the bass staff followed by a short note about a seventh interval (E) above – actually they are like the tones you make by blowing on a gallon jug.

I think it’s like my audio nerve + brain section that interprets sound, is anxious to get going with this new possibility.

At this time, I still have no hearing at all that I can tell in the right ear.  I thought at one point a couple days ago, by playing my oscillating (feed back) hearing aid in my right ear, that I could sense a sound there, but it may have been just leakage to the other ear.

On Monday, Dec.11, I felt a lot better and drove myself to the post-op appointment.  The Dr. said my incision looked good with no problems.  I had no dizziness that day to speak of, just a little weak, and was tired when I got home.

But Tuesday, Dec. 12, I got really dizzy and mildly nauseated – I realized it would only stop if I kept my head perfectly still – it was any sudden motion that would set it off.

Today, Wednesday, Dec. 13, the dizziness was gone, but I still felt light headed somewhat and wanted to just rest.  But I still took my wife to 2 doctor appointments that she had and had no trouble driving to those destinations and back.  And I also did my regular video editing for our church site on Youtube.

By the way, the right ear is still swollen, and is sticking out a little bit, but it is gradually going back to normal.  Feeling my scalp, I can’t tell where the imbedded attach point is.  I moved a boy scout compass around the area and I can see the needle swing toward something about even with the top of my ear, and about an inch (2-3 cm) behind the ear.  It seems to be about where the incision ends.

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
Appendix: Home Hearing Test
December 30 – 26 Days after surgery

It has been a pretty rough recovery these past 3 1/2 weeks.  I have felt really well only about 4 or 5 days.  Most of the time, a little dizzy from the middle ear fluid, I would guess,  and tired most of the time.  I think it has to do with my age (77 in January coming up), and being overweight and out of shape.  I tend to suffer from mild depression as well, so I can easily talk myself into doing nothing.

We called the ENT surgeon’s office, and was told that the dizziness is fairly normal for quite a while.  I was also told by a lady with experience with CI patients that it sometimes takes months to get completely over the general anesthesia.

My wife is a great encourager, so overall I know it will all work out and the new adventure coming up next week. My CI gets activated with the beginning of learning to hear again; I am pretty sure that the excitement from that phase of the process will help me forget these few days of mild suffering after the surgery.  It helps that I am at heart an experimental scientist who loves new adventures and research, looking forward to the challenge during the next few months.

In the meantime, I will mention that one night about 10 days ago I tried for the first time to sleep on my right side resting my right ear on the pillow.  Suddenly the room seemed to start whirling around me and I turned back over.  I didn’t try to sleep that way again for several days at which point I did not experience that effect any more.

Also, the ear swelling has just about disappeared, and my hair growing back has pretty  much disguised the surgery scar.  And I can now feel where the internal disc is located – it seems to be closer to the ear than the other few people I have seen wearing the devices on their head.  So I think that will mean the appearance will be less distracting to persons who see me wearing the external attachment.

I wish everyone a great new year and for those who are considering the CI operation to be brave and very courageous, as the Lord told Joshua when he was about to enter the promised land.  Be blessed!

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 Days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test

January 4, 2017 – The processor is activated!

Well, today my CI (cochlear implant) got activated!  So exciting to hear sounds in my right ear for the first time since December 4, 2017, although a little weird, as expected, but better than for some patients that I have read about. At first, because of the snow overnight, our audiologist office called to allow us to wait till tomorrow, we said, “That will be fine.”

But then the sun came out about that time, so I told my wife that I was going to try driving around the block to see if we would be able to make it;  I came back with the report that we would be fine and we were then able to re-establish at 1:30 p.m. the 2 p.m. appointment!  We are so glad that happened.

 Here the audiologist, Sean, is turning it on for the first time with the computer attachment.  I heard some kind of sound, but this stage was just the one where the electronics are being tested in the internal processor.

Sean was not surprised that I thought the internal disc would be closer to the ear – he said that is because the slight irregularities I can feel through the skin is the internal parts besides the disc.

Here is a video of the first session with Sean

The next thing he did was to put together the external unit (the cable and the battery compartment), placed it on my head, and gradually turned it on while my left hearing aid was turned off.  He was speaking to me during this time, gave me a chart to help me tell him when it got too loud – so we settled for “loud, but not uncomfortable”.

During this part of the activation, I could actually understand Sean’s words with a few misses, but it sounded like he was speaking through a long, metal pipe with a hollow, resonant sound with echoes.  After letting me get used to the new sensation for about 5 minutes, he then let me turn on my hearing aid in the other ear.  And, wow! I started understanding his speaking quite well which got better and better during the next 1/2 hour or so of the appointment.

And on the way home, I could understand my wife’s, Leslie’s, speech sitting to my right better than I have in a long time.  And she told me that I finally quit talking so loud to her and how wonderful that was. (I am finding that even my “quiet voice” is too loud in my own ears).

Back home.  I just turned on a TV show, and for the first time in years, I can actually almost understand it at a volume level that is comfortable for my wife!  That is so amazing.  I still need the captions right now, but I can see that in the near future I will not have to have them all the time.

With the CI already helping this much after 3 hours, and things are only going to get better, I am already forgetting the uncomfortable month after the surgery, and at this point, I am hoping that the normal 6 month’s minimum wait time for the second surgery will be shortened.

I go back tomorrow for the next adjustment.  Very wisely, Sean is stalling in letting me start experimenting on my own with the remote and other attachments.  So I am seeing that I will have to have great patience in the next few weeks and months. 🙂

I will add a video recording that I made of the first session when I get it edited.

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July_25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test
January 9, 2018 – 5 days after activation!

Tomorrow I go back for my 3rd session with the audiologist.  From then on it will be once a month starting on February 14 (Valentine’s Day!).  The things I am hearing for the first time in years are amazing!  I went outside a few minutes ago to scold a squirrel away from the bird feeder.  And he (she?) scolded back with that high pitch protest, or it might have been a bird scolding me, but anyway, I haven’t heard that high range of sound in years!

For the first time, ever, I heard the rice cooker signal when it had finished cooking – again a high frequency beep that my ears (with modern hearing aids) could not pick up. (I never used a rice cooker back before my hearing loss began).

Last Friday, with much of Richmond shutdown from the snow storm on Wednesday night, and probably with lots of audiology appointments canceled, I had the attention of most of the VCU audiology team.  It was wonderful!  I got my second adjustment of the CI processor – I hope to soon simulate with an audio track what it sounds like when I am only hearing through the implant – and Sean and Lisa added more range to the hearing, I think. (They won’t tell me exactly what they are doing. – Sean is very experienced in dealing with Techies like myself that think they can hurry the process along if he would just let me do some of the adjusting! He says the more I vary other inputs, the more it will slow down my brain’s learning curve – I really appreciate how he gently, but firmly handles problem patients like myself.)

So, I am being unusually (for me) patient so far.  After that session, then Amy, Lisa, Janet, and one or two other staff persons worked in getting my Resound hearing aid (HA) back on track – it quit working with the Resound iPhone app, Smart 3D, and I wanted to get that control back.  After an hour or more of Dr. Janet’s time on line with Resound, they finally declared the HA was asleep (we think they meant “dead”) and to return it to the factory.  Then the staff supplied me with a digital Phonak HA which restored my left ear hearing so that I had stereo ability once again.

Although I can understand speech with the CI alone, it is still not very clear, especially with female voices.  I can understand Sean, I would say, about 75% of the time – with women, it is more like 40%.  They said that was because his voice is a lower pitch, and was typical at this stage of learning.  But with the HA in the left ear working in conjunction with the CI, my speech understanding improvement is astonishing.

Sean said, the process of my brain fully adjusting will take maybe two years to fully complete which sounds like a long time, but after 20-30 years of hearing difficulty, that doesn’t seem to be too long to me. (At my wife’s and my ages, we are amazed how the years are flying by, anyway).  And this adventure that I am on, with daily discoveries of new sounds, has brought an excitement that I am looking forward to experiencing for the months ahead.

I understand now how other recipients talk about the first thing they do upon waking is to put on the processor and activate their implant, which I now do as well.  Before I would sometimes go all morning without putting in my hearing aids, but no more!

January 19 notes:

• My wife says I have quit “shouting” all the time – i thought I was talking in a normal voice – when the CI was first turned on I was shocked by how loud my voice was.
• She says I am not having her repeat what she says nearly as much, but my communication skills in understanding the “female stream of consciousness” is not much better!  🙂
• Hearing high frequencies in the right ear – for first time ever I could understand a video by one of favorite speakers: Ravi Zacharias.
• While listening to earphones to spoken words, I noticed I am clearly hearing in the right (CI) ear the consonant sounds (sibilants) like esses, and distinguishing between “t” and “d”.
• Did I tell about zero residual hearing in right ear?
• Flu – side effects of dizziness, or is it still the CI surgery/fluid adjusting?
• Batteries – lasting 3 days or so
• Two things I want to add:
  • Edit the initial video with Sean
  • Simulate how the “filtered” voice sounds to me.
• From the first activation, I could hear better and understand more with the CI turned on than I could with just the left ear hearing sound.  Maybe that’s because until Dec. 5, my right ear was hearing just as well (badly) as my left ear, so the brain was not surprised by the sounds, even if distorted.

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test
January 26, 2018 – 22 Days after activation

During this long part of the story, the day-to-day changes are gradual so it is not very easy to know  what is significant in the progress.  Already, I hear so much better with my CI turned on – I never go without it.  When I had dual hearing aids of the latest top-of-the-line Resounds Enzo 3D, my hearing was really good (compared to previous aids) in that I could pinpoint where a sound was coming from, and use the iPhone app to focus and adjust for the environment.  But I still could not understand the words being spoken except for certain speakers in quiet environments.

Now, I have good location ability of sound without the iPhone app, and  I am hearing high frequency sounds of birds chirping, for example.  And I can hear the the sibilants like “t”, “s”, “z” sounds in words for the first time in 20-30 years!  Some examples are words that depend on those sounds are: “sip, zip, ship, chip, and jump, and the second consonant in vision.” (from Wikipedia under sibilant).

BEST of all, the experience last Sunday:  my wife and I are active in a local church that meets in an old theater with concrete floor and walls, resulting in lots of echoes and very loud background noise.  I have never been able to carry on a conversation inside the meeting room.  And I can only hear and understand people speaking when I am wearing sound-cancelation earphones plugged into the sound system (which is why my main job for the church is doing the sound and video recording).

This last Sunday was the first time I had been to the large meeting since my CI surgery, having been under the weather for the last 6 or 7 weeks (not only the surgery rehab time, but also have been sick – caught the flu in spite of the extra strength flu shot.)

The amazing thing was, I could understand the conversation of friends in the noisy room for the first time in the seven years we have been attending the church!  Wow!  That is so encouraging.

I need to admit that men’s voices are easier to understand than women’s which the audiologist said is normal because my brain will take quite a while to understand how to interpret the high frequencies which I am hearing for the first time in years.  He also said the adjustment to the new sounds will continue for a year or more in the learning process, always getting better and better.

The battery life:

The special 675 batteries for implants are longer lasting than regular 675 hearing aid batteries, but the life is only about 2 days of wearing them all day.  The CI instrument uses 2 of these at a time.  So I am glad that the MedEl accessories included a large supply of these cells.  Also included are rechargeable which I have tried.  Three of these standard size batteries (you use one at a time) are included,  The manual says the standard size lasts up to 10 hours, but I have found only 4-5 hours of use. (The micro size batteries are said to last up to 7 hours, but I doubt that).  (See note added at top of the article).   Here is an image from the manual.  However, that is a small complaint compared to not being able to hear in my right ear.

I am trying to “tell it like it is” including any negative sides of the story, of which there are very few thus far.  I only was able to get the CI surgery and pay for the technology because I am under medicare.  I was shocked to see the Medicare accounting for this operation.  Besides the surgeon fee, which was reasonable, the total cost of the hospital stay and the equipment was $120,000 or so!  Wow!  I had no idea it was going to be that much.  But all but about $1000 or $2000 will be covered, and maybe our supplemental insurance will cover even that part.

Virginia is one of the states whose Medicare benefits covers 2 implants; so I hope to get the 2nd implant later this year for the other ear while that benefit is available (with the government going through so many changes, you never know what the future holds).

Until next time… listening to the newly-opened-up world of sound.  🙂

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test
February 16, 2018 – My first monthly adjustment

I had my first monthly CI adjustment two days ago.  Not much changed except the Audiologists (Lisa and Jennifer) turned up the volume on all of the segments of the CI.

Just before that appointment I did a DIY (do it yourself) hearing test.  The results are added at the bottom of the page – Appendix: Home Hearing Test

Sean, the first audiologist, noted about those results: “Interesting information. Just remember that the CI frequency boundries are 60Hz to 8.5KHz. Pretty good if you picked up anything at 100Hz”.

I found out this time that all of the segments of the implant were turned on the first day, but just not as loud.  And as my brain gets used to the “sounds”, I think it gets less sensitive to the different frequencies.

This time, I let the volume for each segment get to the level of “loud and uncomfortable” – and then Lisa turned it back one step.  I think last month, I was so shocked by how loud it seemed that I didn’t get to the level of “uncomfortable”.

And during the conversation, with HA turned off in my left ear, I was able to understand Lisa’s and Jennifer’s talking much better than last time – so that was encouraging that my brain is really learning how to decipher speech.

With the CI alone, it still sounds weird – like I am standing in a small metal enclosure, like an empty water tank, with the resonance that such a surrounding would give.  I think that is what users describe as “mechanical sounding” or “artificial and electronic” sounding.

Another thing I am noticing is that I can hear high pitch sounds from speech – it is the “s”, “t”, “d” – the sibilants – that sound like “hissing” – especially the “s” at the end of words.  And right now,  these sounds seem disconnected from the rest of the sounds of the words – like there is a gap in the frequency response of my ears between the normal pitch of voice and the sibilants.  I imagine that is part of the learning process that my brain is adjusting to.

Since I have not heard those sounds in 20 or 30 years, it makes sense that I am  having to re-learn them.  On the other hand, the twittering of the birds outside, which are also new-to-me in my old age, (did I say I was 77 this year?), I was able to identify and enjoy immediately with the CI. 🤠

The more I read of the dual implant experiences the more sure I am of wanting to get the second one later this year.

That’s the news from Richmond, VA. More next time.  Please leave comments for me and I will be glad to answer any questions.  If you want the comment to be private, just mention that, and I will reply via email if you leave an address.

February 18, 2018  – (A funny aside)

There we were, standing outside at a friends home, looking at their extra car they wanted to sell.  Brad, our friend, was admiring the medallion type necklace that my wife was wearing.  She had had it for years.  “I think it’s made of tin cans,” she said.  I said, “It looks like silver to me.  Here, I have a magnet – I can test it.”

And I proceeded to remove my CI external device from my head and held the magenetic disk to her necklace.  “See!  No attraction – that has no iron in it,” I pointed out.

Everyone laughed.  “I had no idea that the CI would give you a new tool to carry around!” she said.  

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test
March 9, 2018 – hearing in a noisy environment

There is not much new to report during this first part of the long learning season.  I definitely can hear better using the CI plus my hearing aid in the other ear, even in noisy environments.  By hearing better, I mainly mean being able to understand people speaking on a one-on-one basis.  I still have difficulty understanding when there any echoes as there usually are with PA systems, for example, at church.

As long as I can plug into the sound system and use noise-canceling earphones or my T-Coil ear hooks [ click here for the kind I bought years ago ] then I do very well.  The remote control for my Med-El CI device has a T setting which turns off the mic and just amplifies the T coil signal, or I can use the TM setting and leave the mic turned on as well as the T coil.  And my ReSound HA has the same kind of choices via my iPhone.

In my church, which is an old hard-surfaced floor and walls and has terrible acoustics, I prefer to use the “T” setting which cuts out all the ambient noise, and I can hear very clearly, but I can’t hear anything around me, like my wife saying something to me.  So I have learned to leave the mic on my HA side a little bit.

If I turn off the HA now I can understand a little better what is being said with the CI, but it still sounds like being in a barrel. The gradual learning is slow, so the day to day improvement is not noticeable.  Next week’s appointment at the ENT clinic will show how my implant is doing, and I imagine the channels will all be turned up some more.  Also, I will start using the “Roger Pen” from Med El which is a remote mic that feeds directly to the CI.  That will give me another story to relate next time.

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test

April 6, 2018 – Second monthly adjustment

It has been a rough last 3-4 months – it started with the December CI surgery: “Doctor, why is it taking so long to recover my health?” “Well, tell me Boyd, when were you 77 before?” “Oh…”

Anyway, my wife went in for surgery on the night before my CI surgery; then she broke her foot a couple of days after the surgery; I got a stomach virus during mid-December; we both got the real flu in January; and I generally have not felt good until this last couple of weeks.

Sean, the audiologist at VCU who has been doing these CI follow-ups for 30 or more years, saw me two weeks ago. He is pleased with my progress. They do a hearing test on the CI every time I go. I think he said that the volume adjustment, even though it is “loud, but tolerable”, is still about 30 dB below the final goal.

I said, “Wow!”. Already I have to turn up my new ReSound HA (hearing aid) in my left ear to its maximum gain to match the volume of the CI. I have found the world as a noisy place – one that went quiet about 30 years ago for me. But I am so pleased that I am back into the ability to hear the noise. Last week I went to Lowes, to the gardening department, I was shocked at how loud were the many birds chirping in the high, outdoor, ceiling. I haven’t heard them in years!

Another example: we went to a going-away party in a noisy, hard surface, small coffee shop near us this week – with everyone talking loudly like they always do at parties. And I was again amazed how well I could understand my friends on a one-to-one basis in that room. I could never do that before the cochlear implant.

Sean also activated more features on the MedEl remote so I can adjust the volume (that was supposed to work at the previous adjustment, but it didn’t seem to work – I think they saw why that was). Sean set the default to be like at the 90% mark, and said he wanted me to always push the “reset” every day so it would start at that level. And he encouraged me to regularly push the volume up because the brain learning process speed would be increased that way.

Only at the loud party I mentioned above, and at our loud church service (young people really like it loud!!), have I sometimes turned it down. And also, at the church I almost always plug into the sound system and use the Telecoil setting on both my HA and the CI.

Because the hearing in my left ear seems to be deteriorating quite rapidly, I am pretty sure I will try to get the second ear implanted sooner than later – maybe within a year. In fact, at a recent MedEl social gathering of clients and potential patients, at least in one case, the person waited 5-6 years between the first and second implant, and he/she usually didn’t wear the most recent processor because of not really having gotten used to it.

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test

May 1, 2018 – Third monthly adjustment

I am very encouraged about today’s visit to the audiologist.  It was Sean Kastetter who was my first audiologist I saw in January when the CI got activated.  He seems pleased with my progress.  He has the CI volume almost to the level of his goal.  His goal is that my hearing will be within 0 dB to 20 dB of normal hearing.  My default (the reset value on the remote) is still about 30 dB down from normal.  

He gave me 2 new programs out of the 4 to try in different environments. Before now, I could tell little difference in the 4 programs, but already I can detect the differences and look forward to experimenting with them.  He told me some of the details of how the CI processors work – I am impressed of how the engineering is done, and different ways they approach “fooling” the brain in how to hear and make sense of the sounds.

The process is quite complex.  One of the options is to use all the different sections of the implant simultaneously, or to use them in groups, for example to pair the sections together so the same signals are going to two of the adjacent sections of the implant.  He says that sometimes helps the brain to learn quicker with the less amount of information being fed through the hearing system.

One thing that made me glad that I went with MedEl is that as they improve and update the external processor, it is always backward compatible with older internal processors.  But the way that has been done is very clever.  They have been able to compress the huge data that is being transmitted by only sending the data that has changed since the last transmission – sort of like the way the compressed video is sent over cable for TV – the only part of the picture that is transmitted from frame to frame is the parts that have changed since the last frame – not the whole picture.

So what?  Well that is why the MedEl batteries last so much longer than (at least in the beginning) the other 2 major companies – they didn’t compress the data in that way, if I understand correctly.  They have moved in that direction, but the older internal processors are not compatible with the newer techniques.  (Again, this is all based on my limited understanding).  I’m open to comments of correction.  🙂

Back to today’s session:  Sean said in future visits he will explain more about what he can adjust, and do finer adjustments to fit my needs as I get better in distinguishing those details.

I told him I really don’t get enough practice during the average day because I am usually at home reading and not around people talking.  My wife is very active, but is away from home a good bit of the week.  So I asked about using TV to help learn.  He suggested watching talk shows, but doing so without captions.  I really lean on the captions, but he said in a week or so of steady watching a particular host I should be able to do without the captions and understand almost everything.

I will also try to learn to like audio books, not my favorite way of reading, but I know that would help my brain to learn faster the CI hearing.

This is Leslie, Boyd’s wife.  I go with Boyd to his appointments to write down anything we might need to remember.  Frankly, not being a science/engineer type, I don’t really attempt to follow the technology part of the visits (I do crossword puzzles).  What has thrilled me about the CI is that during a brief trip that we took to Houston last week to visit his relatives, Boyd was able to interact with his sister and cousins in ways that would have been unimaginable before the CI.  I see changes in his attitude toward people.  Now that he knows hearing is possible, he is much more patient with communicating, even when it isn’t easy.  That, for me, is the real blessing of the CI.

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test

June 11, July 9 – Forth and Fifth monthly adjustments

The last 2 visits have been kind of routine – guess the excitement phase is over for now. The learning is still advancing but it is slower, it seems, because it has been so long going. During this last session – Sean (the audiologist) always starts with a hearing test with and without my left hearing aid activated – he and I were both surprised that for the first time I could understand more of the test words and sentences without my hearing aid turned on, using just the CI alone.

I still don’t find the CI sound as natural sounding as I would like, but I am greatly encouraged at being to carry on conversations for the first time in years with a variety of people and in different settings. I still cannot understand persons at a distance in a group setting – it has to be one-on-one.

Also, I am realizing that the mental challenge to struggle to hear every word is tiring. For example, on most Sundays, our church has a large gathering for about 2 hours for which I listen on ear phones (since I do the audio/video recording). And then it is followed after about an hour with a small group meeting for another 2 hours or so. I don’t hear near as well in the second meeting and I think it is because of “mental” fatigue. The “strength” to go longer will improve with time, I believe.

Sean each time at the visit has adjusted the 4 settings in the CI to try out. He said that it’s all right if I can’t tell much difference right now – that it will become more obvious as time goes on. This week in one of the church meetings, as I tried the 4 programs, I could hear a slight difference, and since the CI records the history of my selections, Sean will be able to tell how to keep improving the programming.

I don’t go back again for 3 months – so the next report will be after the October 22 appointment.

Oh, I forgot to say, that my music hearing ability is so much better! That was my hope from the beginning. I am even getting geared up to tune a friend’s piano soon since I can hear the pitches again. And I played for a variety show last month which I would not even dared to think I could do ten years ago.

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test

November 29 Adjustment after 3 (actually 4) months

Gradual progress continues. Sean made a quite large adjustment this time, giving me 2 new programs to try, encouraging me to especially use one (#2 in my case) for which the “sensitivity up/down” should be noticeable. And sure enough, it is.

Last night I went out on the front porch and could hear a loud cricket or frog making a call over and over. I adjusted the sensitivity to “narrow” and if I turned my head I could determine where the sound was loudest; if I turned my head sideways (90 degrees), either way, I could no longer hear it.

Then I selected “wide” on the up/down buttons, and I could hear it even when my head was turned sideways. So now I can use that to help focus on whoever is talking to me, but looking directly at them.

Here is a photo of the Med El remote with the buttons to the right hand side known as “sensitivity”, but I would rename them as focus (wide and narrow) like the Resound hearing aid setting called “speech focus”.

And I should add, there are 15 steps from “wide” to “narrow” – so in the above description, I went to both extremes, i.e. the narrowest and the widest in my listening experiment.

One thing I want to note: my audiologist (who is pretty famous for working with CI for 35  years or so) does not recommend going alone with the CI by turning off the HA in the other ear.  He has found that the brain can learn faster with both devices turned on, unlike some who recommend using the CI alone.

The only case he recommended it is in learning to hear the TV w/o captions.  He suggested listening for about a week to a talk show on a daily basis for an hour or so to train listening with the CI alone.  I tried that, but I have an aversion to listening to those “dumb shows” (my opinion), so I haven’t done that yet.

I agree with this suggestion to keep learning with both the hearing aid (HA) and the cochlear implant active mainly because the patient does not get as discouraged about how long it is taking.  Sean has found that after about a year, the brain will find the CI is becoming the dominant source of understanding speech on its own – not because the HA has been turned off too early.  About that time, the patient starts to find that he/she is hearing better with the CI than with the HA, (if he/she has to choose) but that both are essential for best hearing.

My own experience confirms his findings.

The big advantage to keeping the left ear hearing aid is that it fills in the missing parts of the CI segments (mine has 28, I think) – the normal ear has thousands of “segments” – so the limitation of the CI is why the sounds from it just don’t sound normal to previously hearing persons.  For example, I can understand my wife so much better now with the one CI, but w/o the HA, I don’t think I would recognize her voice.

And music!!! The HA fills in much that is missing with the CI alone, so that the combination has brought back music, especially orchestra type music that is not, thus far, enjoyable with just the CI type sound.  I am, for the first time in 10-20 years, enjoying playing the piano again when I have both devices turned on, not if I try one or the other alone.

Another hard decision I am thinking about is if and when to go ahead with the left ear CI.  I have heard the longer you wait the harder it is for the brain to accept the second implant.  Sean says there is no hurry – that 3 to 5 years in between surgeries is typical for successful second implants.  So I have relaxed about trying to speed up that decision and delay it until my left ear deteriorates dramatically more.

I see him again in the last part of January 2019 and will write more after that.

I wish everyone a blessed holiday season that is coming up soon.

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test

April 14, 2019 – 16th Month Report and Roger Pen Experience

My hearing is gradually getting better and better.  We visited friends yesterday (2 on 2 plus a dog).  And I had no trouble at all following all the conversation – that would have been impossible before the CI.  I have gotten so used to hearing conversations again that I sometimes forget the miraculous improvement that I am experiencing.  And also because of the long time line of its gradual improvement I am not noticing the day to day improvement as much.

For larger group settings, I have learned to use my Roger Pen which came with my CI “package” that goes with the Med El  CI processor.

(By the way, my audi didn’t tell me much about the Roger Pen, and I didn’t read all the literature that came with my “stuff” – the are 2 types of covers for the CI behind the ear processor –  one with the Roger receiver, and a smaller one without the receiver – once I found that out, I suspected the rechargeable battery would last longer with the shorter cover – and it does – about 2 hours longer/day.)

The Roger Pen is an amazing device (and expensive!) (Someone told me you can get used ones much cheaper on ebay.com).It is a little confusing at first, and I still have not completely explored all the features, like connecting to my smart cell phone.

But the normal mode will automatically switch modes in a very helpful way in group settings.  For example if the person speaking points it towards his or her mouth, it switches to the narrow, focused mode.  If you lay the pen on a horizontal surface, it switches to the wide mode, picking up all the voices around the table or whatever surface it is laid upon.

So in our weekly small group meeting (about 20 people) the Roger Pen is used as a “talking stick” –  you only talk if you have the Pen and I can hear and participate for the first time in years.

The Roger Pen [shortened to “Pen” for this story] is made by Phonak and is more closely associated with the Advanced Bionics technology, but I suspect Med El will catch up soon on the compatibility that some of the other CI industries have incorporated in their processors (like working better with iPhone, for example).  The feature I wish I had with my Pen would be the ability to turn off the CI microphone and just use the Pen input (like it does with the T coil setting). Also, I would like to be able to control the volume of the Pen independently from the CI processor.  But still it is very useful in being able to hear – another example is talking in a restaurant with its noisy environment.

My new-found friend in Canada has a lot of information from his experience and research about Med El and working with the Roger technology.  I will ask him if I can post the email discussions we have had about it and put the link here soon.

Be blessed, all of you!

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
April 14, 2019 – 16th Month Report and Roger Pen Experience

July 25, 2019 – 18th Month Report and More Roger Pen Experience

Wow! I finally broke down and got a Phonak Roger receiver for my Hearing Aid (a Resound ENZO 3D) – the audi got the battery adapter to hold the receiver. (The “new” list price for the receiver is something like $900, which I consider ridiculous, so I searched Ebay for it and found several in the $120-$150 range). Both type 02 and 03 will work. And the “dual” hearing from the Pen (short for Roger Pen), I would say, improves my speech understanding more than twice as well. And that is especially because my HA side is my “dominant” ear for understanding speech.

Even though my ears were both equally bad, I always used my left ear to talk on the phone where my brain seemed to interpret speech better than my right ear – so the surgeon decided to do the first CI on the right ear, and I’m glad he did. Now with the sounds being received equally as well in both ears through the Pen, and with the additional features that gives, like volume control, and a focused microphone that I can pass around, I am doing much better in group settings.

You might ask, why not just use the T-coil method which will feed both ears? Two reasons: the quality of the audio is not as good, and it requires additional accessories – like a neck loop. The Pen method does not need any extra parts to carry around.

Additional Features – Music Enjoyment has Returned

But this week’s excitement is that I have learned how to hook the Pen to the TV and to my computer audio, and I can hear and understand the speech without subtitles (captions) turned on! But even more exiting to me is that I can listen to recorded music and finally enjoy it after a 15 or more years hiatus from being able to do so.

I even quit playing piano and organ because it didn’t sound right. But now the Roger system is really helping my brain to adapt to the new type sounds and interpreting them back to what I was used to before as a semi-pro musician. That adjustment is still in the “learning mode” but now I am eager to do what it takes to start fully functioning as a musician.

Today, I also added the iPhone connection to the Pen and now I think I will be able to do more talking on the cell phone rather than always texting to communicate. I haven’t tried it yet, but I played a voice mail, and sure enough, it played to both ears!

 

December 5, 2017 – The Surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test

April 13, 2020 – 29 Month Update

With my last visit to the Audiology Department at VCU, I decided to explore if it was time for the 2nd CI so I saw the surgeon, Dr. Daniel Coelho, and he asked which was better for hearing now: the CI or the HA? And I said I hear better with the CI than the HA (hearing aid).  He suggested trying to go without the HA for a while, and I did, and my speech understanding improved noticeably.  And I have “sailing solo” with the CI for 2 months or so.

Dr. Coelho suggested that if my brain is receiving the same type signal from both ears, instead of the 2 different kinds of stimuli with the CI and HA both sending signals, then the merging of the sounds will improve the hearing experience.  And so that is another reason to give up the HA for this period before the surgery – that’s my opinion! 😎

I was surprised to learn I also can even understand a person speaking close to me in a noisy environment better than with just the CI instead of the combination of CI and HA.  Maybe that’s because the much of the lower frequencies are missing with the CI.  I told my wife that her voice to me sounds like a loud whisper with no tones in it.  With some men’s voices, the lower tones come through, but most of my friends talk too fast and do not enunciate words so that I can understand them.

Back in the winter we scheduled my surgery for the second CI to be mid-April this spring, but with the COVID-19 pandemic, it has been postponed till this coming summer.  I plan to report this summer on how well the 2nd adjustment goes.

 

December 5, 2017 – The Surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience
Appendix: Home Hearing Test

September 6, 2020 – 33 Month Update

With the pandemic of COVID-19, I decided to put off the surgery for the 2nd implant indefinitely to at least till after receiving a vaccination for the virus, and with the latest experimenting with the HA in the left ear and CI in the right,  my speech recognition has improved considerably. 

After going 3 or 4 months with just the CI, I think my brain did improve in understanding the “loud whispering” sound of voices, but it never has gotten to sound natural – the tonal  parts of my wife’s voice, for example, are missing – I’m not sure I would be able to pick out her voice from similar female voices.

December 5, 2017 – The Surgery
December 13, 2017 – 9 Days after surgery
December 30, 2017 – 26 Days after surgery
January 4, 2018 – The processor is activated!
January 9, 2018 – 5 days after activation!
January 26, 2018 – 22 days after activation
February 16, 2018 – My first monthly adjustment
March 9, 2018 – Hearing in noisy setting
April 6, 2018 – Second monthly adjustment
May 1, 2018 – Third monthly adjustment
June 11, July 9 – Forth and Fifth monthly adjustments
November 29 – Adjustment after 3 (actually 4) months
April 14, 2019 – 16th Month Report and Roger Pen Experience
July 25, 2019 – 18th Month Report and More Roger Pen Experience

April 13, 2020 – 29th Month Update

Appendix

Home Hearing Test

I was curious about how well I was hearing different tones across the sound spectrum.  So I did a test this morning – probably nothing new, but maybe it will help. I tested both the CI and the Resound Enzo 3D, through the mics and through the T-coil.

Hearing test using http://www.szynalski.com/tone-generator/
On right ear (the CI side)
• T Coil only:
Using the T-coil hearing “ear phone” set: (the Mac computer is at about 1/2 volume)
Range: from about 280 Hz to 7000 Hz with 5% setting on tone-generator volume – noticeable peak from about 400 – 1000 Hz.
At 100 % setting, starting from 60 Hz – nothing till about 100 Hz.
• Microphone only: – The Macbook Pro is source of sound
About the same, but extends upper frequency limit to about 9000 Hz at the 5% setting (100% on the Mac volume)

—————————————————
Left ear (Resound Enzo 3D HA):
• T Coil only:
Again, using T-coil only, the test is almost the same as with CI except the upper cutoff is around 3300 Hz.
• Microphone only:
About same as T coil, but the upper cutoff is a about 100 Hz more.

——————————————
To make sure the lower frequencies were not cutting off because of the small speakers in the Macbook, I hooked up to my Bose music system, and the ranges were still about the same, although I could hear tones down to 100 Hz or so, and sense even lower tones.  But below 280 Hz or so, the tone volume in my ears was faint, and fainter as the frequency decreased, of course.