4th entry ~ July 31, 2023

Facebook post and report on today's evaluation.

Hearing Update:

I don’t have much to report from today’s CI evaluation. I still qualify for an implant on the left side, which has slightly worsened since my last evaluation. I was certain that my right ear had gotten worse, too, but today’s tests proved that it’s actually made a small amount of improvement. I was quite surprised by that.

Tomorrow I’ll contact the surgeon’s office for an appointment and to get a place in the line-up. There will be quite a lot of paperwork and some preliminary tests, of course.

This is a “scare-citing” adventure for me - quite a bit scary and quite a bit exciting. I’m not afraid of what’s ahead; I’m anxious, as we used to say, to “get the show on the road!”

Don’t be surprised if you see a few solo piano videos from me in the next few weeks. After the surgery, it may be quite a long while before Music is my friend again and I want to share some music here while I still can.

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I thought my appointment was going to be with Dr. Sarah Cain, but it was with Dr. Jerad Battles. He’s a super-nice guy and we both liked him a lot. His voice is in a near-perfect range and I didn’t have any trouble understanding him. After the tests confirmed my eligibility, he covered all the bases and walked me through the ‘What to Expect’ routine.

He told me that there were certain areas in the high frequencies that, when I was unable to hear the tones, he increased the volume in some cases as high as it could go and I was still unable to hear the tones. I told him about my experience at the piano, essentially unable to hear to top octave of the keyboard, and that one of the people who tested me at Hearing Life in Norman (maybe two years ago) told me, after learning I was a life-long pianist, “Well, you hear fairly well up to about Middle C.”

It’s unclear at this point who my CI audiologist will be. Dr. Cain now has two babies at home and is part-time at Hearts for Hearing and he was unsure if her case load is such that she can take on another patient. I explained to him how I had come across her name (he’d already read about it, as a copy of my paper is in my file) and the importance that music – and the ability to make music – has in my life. He told me there is at least one other audiologist on the CI staff who is a musician (though that doesn’t necessarily mean that they will have any expertise in mapping the device, called a ‘processor,’ for music listening and performance. Time will tell, I guess; I’m not going to worry about that).

He also said that it’s not unusual for some people to have a small amount of residual hearing in their implanted ear, but that it was unlikely that I would have any, or perhaps a minuscule amount, not sufficient to provide any viable support for natural hearing. That doesn’t surprise me; I have said for a long time that the primary function of my left ear is to keep my glasses on my head!

I’ll have to return to H4H soon to complete some paperwork and undergo some additional testing, including some cognition tests that I remember doing when I had the first evaluation just about a year ago. Today’s test results have already been faxed to Dr. Berryhill’s office in Norman. I will go down there after lunch tomorrow and speak with the receptionist, with two objectives in mind: (1) make an appointment for the initial assessment with Dr. Berryhill; and (2) get my name in the ‘surgery line-up’ (for lack of a better term).

I asked Dr. Battles how long it may take after the first meeting with Dr. Berryhill before the surgery would happen. Of course, he can’t be very precise about it, as he isn’t privy to information about Berryhill’s schedules at his clinics (in Edmond and Norman). He said that he expects it could be as much as a couple of months. My sharp mind quickly moved from August 1^st (tomorrow) to October 1^st (two months from now), so I suppose I’ll have the device in my head sometime around fall break, perhaps earlier, or maybe by Halloween. That’s cool, actually, because I was hoping that I could have it done ahead of Thanksgiving and Christmas.

There will be a period of time, perhaps as long as four weeks, for the incision to fully heal, at which point ‘Activation Day’ will be scheduled. I don’t believe that will be a lengthy appointment, but more like an initial assessment of how well (or how poorly) I am able to understand ‘speech in quiet’ – that is to say, in the confines of the audiologist’s office. He said there is typically an appointment made for the following day, then another in about a week, and another at the end of the fourth week – so four appointments in the first month. The fifth appointment is usually at the three-month mark, with another at six months, and another at the first anniversary of activation, so seven appointments in the first year. After that, the schedule can be every six months to as much as a year, whatever is appropriate.

H4H has added a new on-site therapy/rehab program for adult patients, which I am glad to know. I had already added that as one question on my list of questions to ask. I’ve also thought of asking my friend Larry Hillis, retired speech and drama instructor and a former colleague (and a neighbor five doors down the street from us), if I could hire him to be my speech therapist for a few weeks or months, helping me with my audio rehab exercises. Perhaps I can find a local support group of other CI recipients.

I told Dr. Battles of the research I’ve done about the whole process and of comparing the ‘big three’ CI manufacturers and models – Cochlear, Advanced Bionics, and Med-El – and that I’ve pretty much landed on the Cochlear™ Nucleus 8 processor. He beamed when I said that; he told me it was the one he was going to recommend. I know that my Phonak hearing aids are not compatible with the Cochlear™ CI and expressed my concern about it, knowing that digital compatibility allows electronic communication between the CI and the hearing aid in the other ear. Much to my relief, he said that initially it’s not a huge concern and that I probably shouldn’t buy a new compatible hearing aid right away.

I mentioned to him that I planned to donate my two sets of hearing aids to the program they have to provide HAs at low cost to people who cannot afford them. He suggested that I donate my older pair, but keep the current ones. They can be programmed to either ear, so I should use one and keep the other one for a back-up if/when one is needed. That makes a whole lot of sense. He suggested that I probably won't have much of a problem with understanding speech using my current hearing aid, but the compatible HA would be more advantageous when talking on the phone. It's too soon to tell how that will all play out, but at least I'm comfortable with the idea of holding on to my current hearing aids instead of buying a new one for my right ear.

3rd entry ~ July 11, 2023

A hearing update.

My Cochlear Implant journey has begun. I started keeping a journal about it a month or so ago, after I finally decided to proceed with the implant.

There’s not a whole lot to report as yet. I met the Medicare requirements for the surgery when their requirements changed, nearly a year ago - right after I had gotten a new pair of hearing aids. Since it’s been more than six months since my first CI evaluation, I have to have a second one done.

I didn’t come to this decision lightly. In the last few months, especially this spring, I have noticed that my right ear - my ‘good ear’ - is weakening, to the point that I am really struggling to make sense of most conversations. Most sound, including speech, is all part of the background noises - and I am often unaware that I’m being spoken to. Even if I am aware of it, I can’t make much sense of it. I often say to my wife, “I am aware that you are speaking...”

Through a Facebook support group for people with hearing loss, I found the name of a CI audiologist in Oklahoma City - one who has a bachelor’s degree in piano performance and knows how to tweak a CI for improved music perception. As it turned out, she works at Hearts for Hearing, the same place as my HA audiologist.

The earliest appointment with her wasn’t available until mid-September, so I was scheduled for the evaluation then. I got a call a couple of weeks ago that there were some cancellations and I could move my appointment earlier - July 31^st is my new appointment, less than three weeks from now.

I still remember bits of the first CI evaluation. It’s nothing scary, but it takes a while to complete everything. There are some cognitive tests included, as profound hearing loss is a contributing factor for dementia. Having been on this road for nearly 25 years now, I can see where that can become a problem. It’s “a long and winding road,” as per the old song, and you can’t quite see what’s around the bend. When you get there, all you see is another bend in the road.

HAs and CIs focus on recovery of speech recognition - that is what they were designed for. Music is much more complex than speech, involving much higher and much lower frequencies, nuances of pitch, timbre, and dynamics, complex rhythms, and many more overtones. In fact, I gave up playing the organ a number of years ago because I became unable to make sense of the sounds coming through my HAs. Thus far, I’m still able to function as a pianist, thought I no longer hear the upper octave on the keyboard.

I will likely have one CI. That is called ‘bimodal’ - two modes of hearing - rather than two, which is called bilateral, or ‘both sides.’ Upon activation of the CI, a patient begins a lengthy process of ‘audio rehabilitation,’ which essentially is an effort to train the brain to make sense of the new signals it receives from the CI. A complicating factor for many bi-modal users is that they will have a CI on one side and a hearing aid on the other - that will be my situation. So my brain will have to figure out how to make sense of two artificial modes of hearing at the same time.

In all the reading I’ve done on this (which is A LOT!), I expect to be busy learning to understand speech for about the next year. At the same time, I will be working on musical perception - but that may take an additional year. There are no guarantees that the CI will work, but I have read many more success stories than failures. From what I read, the more work one does on rehab, the better the final results are.

I’ve written all this, really, to say that I am playing the ‘special music’ at church this Sunday - in the slot usually reserved for the choir (which is ‘on holiday’ for the month of July). I’m not at all sure, but this may be the last time I play in church for quite a long while - perhaps forever.

If you want to hear my ‘last hurrah’ on the piano, come to St. Stephen’s UMC in Norman this Sunday - or tune in to the Facebook video on the church’s FB page.

My fingers are crossed that I’ll be one of the ‘super star’ patients whose understanding of speech - and music! - return at the point of activation. That’s not realistic, but it does happen.

Hmm. I wonder what's around this next bend in the road.

2nd entry ~ July 1, 2023

I had a response that Dr. Cain’s schedule was booked solid and made my appointment for a CI evaluation with her on September 12^th, which was kind of a disappointment, since I was ready to get this ball rolling! Anyway, this past Thursday evening, I got a call from Hearts for Hearing. This is the post I made the following day to two Facebook groups – Adult Musicians With Hearing Loss and Hearing Loss: The Emotional Side.

I write a family newsletter and made this addition last evening.

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Sometime around 5:20 or so, my phone rang. I was across the room and, of course, couldn’t get to it in time to pick up the call. It was from Hearts for Hearing, so I called the number right back. It turns out that there have been a few cancellations and my appointment for the cochlear implant evaluation could be moved up. I was on the calendar for September 12^th, but have rescheduled for July 31^st, just a month away. I don’t know how quickly things will begin to move after that evaluation, but guess I’ll find out soon enough. I have to admit that I’m a bit frightened – well, I’m scared as hell – about the possibility of losing my ability to hear music – and to make music – as I have been able to do for so many years. The last few haven’t been the best, of course, but I have been able to make sense of the piano, at least, and I continue to enjoy playing. I’ll walk courageously into this future, whatever it holds. I know that ‘audio recovery’ after a cochlear implant is a difficult task, physically and emotionally, but I’ve committed myself to it. I’ll turn my piano into an ‘ARC’ – audio recovery center (my own term) – and use it to help retrain my brain to make sense of the new ‘aural sensations’ it receives from the implant. I’m going into this with my fingers crossed, hoping for the best possible results.

The post drew quite a number of comments from other members, including the administrator of the ‘Hearing Loss: The Emotional Side’ FB group, who added a link to a book he’s published, a compilation of 25 podcasts he selected from a number of interviews he conducted with cochlear implant users, audiologists, and surgeons. I ordered the book yesterday and finished reading it just a few minutes ago. While it needs serious attention from an editor (to correct the numerous spelling, grammatical, and punctuation errors), the information included in the book is quite wonderful. The opening section includes interviews with CI recipients; another section contains interviews by CI researchers and developers; another presents interviews with doctors and surgeons; and the book ends with a number of helpful resources for CI users, or those who are considering having an implant surgery. If nothing else, reading this book has made me believe that my decision to proceed with an implant is the best decision for me.

Today is the first day of the month; my appointment with Dr. Cain is the last day of the month, just 30 days from now. In a comment to my family in a recent letter, before I learned that Dr. Cain’s schedule was booked until mid-September, I wrote that I was hopeful that I’d have the surgery by my birthday. One of the questions I have for her is “How soon after the evaluation can the surgery be scheduled?”. I suppose it depends totally on the surgeon’s schedule.

I believe my surgeon will be Dr. Wayne Berryhill, whose Norman office is less than a mile south of our house. He also has an office in Edmond. I learned that he is on staff at the Norman Regional HealthPlex, which is just across 36^th Ave. NW from our neighborhood, about two minutes away from us (including opening the garage door and backing out the car to walking in the front door of the hospital). I’m hopeful that my surgery can be done there. It’s an outpatient surgery and I will not be able to drive myself home. Carolyn doesn’t want to drive in Oklahoma City, so the HealthPlex would be the ideal location. I guess we’ll know fairly soon.

Meanwhile, my next appointment with my HA audiologist, Dr. Mathews, is July 13th. The appointment is mostly a checkup to be sure my hearing aids are working at their best level. They will probably both get new tubing while we're there. One of the concerns that I will bring to her is that I believe the hearing level in my right ear, my 'good' ear, has decreased noticeably in recent weeks. My appointment that day is at 11 a.m., so I imagine we will have lunch at the taco place Dr. Mathews recommended the last time we were there - Hacienda Tacos. Their tacos are quite tasty! My appointment on the 31st is at 2:00 p.m., so the afternoon 'rush' traffic will be gearing up about the time we finish that appointment. I'll suggest to Carolyn that we find a new restaurant somewhere in Edmond or near the clinic, or perhaps shop at Quail Springs Mall for a while, so we can miss the frustration and danger of rush-hour traffic.