My Cochlear Journey

[pathurley]

Since there seems to be interest, and to avoid derailing other threads, I am going to tell my cochlear implant story here. This is a work in progress, at the time of this post i have only been activated for about 2 weeks. To give the backstory, I will have use a few posts here at the start to avoid this becoming a giant wall of text.

I started out with good hearing, the last time I was tested in school (5th or 6th grade) I could hear any beep that the machine could make, the tester even remarked on how well I heard.

This changed at some point in my 30’s, I can’t tell you exactly when but eventually I noticed that I was having trouble understanding in noise, but the real telling point was a new job that required me to spend more time on the phone, just enough to tell me I had trouble. I did the denial thing for a while, I have allergies for enough things that it was easy to tell myself it was just that my ears were plugged, I kept changing allergy meds, looking for something that worked, even tried allergy shots. Hearing never got better. So I finally went for a hearing test.

My primary physician was part of a group that had an audiologist in it so that is where I went. Testing showed a moderate flatish loss in my left ear and some mild loss in my right. Since it was asymmetric the next stop was an ENT for some testing to rule out things like nerve tumors and such. That was fine and so I was fitted with a Resound half shell aid. Until I found this forum I never knew that there were places that would let you trial different aids, every place I have been you bought them and then could return them within 45 days for a refund less a restocking fee, that NY limits to 10% of the cost.

So now I could hear again, at least for definitions of hear that we are used to. Eventually my right ear declined more, although my left generally kept ahead of it. About 3 years ago I was looking for new aids and using discounts through HLAA and what my insurance would cover I got a pair of Starkey Muse 2400 RICs for just about $2,000 out of pocket.

Then I got a promotion and moved. Was recommended a new hearing place here that serviced Starkey’s, went to them a couple of times, but they were one of the chains and I was not really happy with them. I am sure they are fine for the average patient but I was not getting what I wanted.

So looking around I found a new Audiologist, Is an hour drive but they do REM among other things and were well recommended. They have become one of the first of Dr. Cliff’s recommended practices so I guess I chose right.

That is were the CI part of the story begins and I will pick that up in my next post but one last thing here. Just so that it does not get lost, here is my last test prior to implantation.

Hearing Test 20190510.pdf (254.9 KB)

[Zebras]

I’m surprised you got a CI with hearing that good. Glad it’s working for you tho.

[pathurley]

So I have a new audiologist, turns out the office also does evaluations and service for CIs. They were having an open house for Cochlear a few weeks after my first appointment. Given my word recognition scores the Doc suggested I stop in to take a look since there was a chance they would be in my future.

So I went to see. Of course I know that the people they bring out for these things are the ones who have had the best results, but at least you can find out what could happen. After that I decided to have an evaluation done, neither of us expected me to need them now, but at least I could find out where I stood.

So I went for the test, normally this would start with the same tests we are all used to, but since they had done one recently I got to skip that and go straight to the new part. This test is done with your hearing aids in. You are in a booth and first they give you sentences at 60 db in quite, you are to repeat the sentences, guessing is fine. You do this first with both aids in and then for each ear with the aid out of the other. So far so good my scores:

Left: 91.1 Right 93.4 Bilateral: 94

So I can hear real well with my aids as long as I can carry on conversations in a sound proof booth. I was feeling good at this point.

Then the test is repeated except this time there is a 60 db background babble and the sentences are at 65 db. My scores for this were:

Left: 40 Right: 36 Bilateral 20

Yes you are reading that correctly, I do worse using two ears then just one. The best guess is that the asymmetry causes conflicting signals to reach my brain. The end result is that I qualified for implantation under any standard that is used even the strictest.

So the next step was meet the surgeon, it took a couple of months for that to happen so I started researching the different brands. I was lucky in that the 2019 HLAA convention was only a few hours away, so I went and was able to talk to reps and recipients of all the brands.

I won’t bore you with how I hemed, hawed, and changed my mind multiple times over who to go with. The biggest problem here is that there is no way to try them out, once you make a choice you are committed, probably for life. I think that any of them will work just fine and that by the point at which you qualify they are most likely to do better then what you have.

After I finally met with the surgeon I made my choice. He was willing to do any of them and had no particular recommendation. He did point out that all of the local audiologists had experience with Cochlear and that I would need to drive 2 to 3 hours to find someone who had much experience with AB or Med-el. And much like hearing aids, the experience of the programmer is a big part of the results. So I decided to go with Cochlear.

Now I waited for insurance approval, had imaging done to make sure my cochlea was good. Got surgery approval from my primary doc and waited.

There is a lot of waiting involved, my evaluation was July 15th, the surgery was finally done on January 3rd.

[pathurley]

These are still turning into text walls, maybe I should have started this when I started.

Okay, surgery was done as an out patient at a hospital. Checked in at 6:30 in the morning was out around 1:00 as I recall. My wife drove us home and I relaxed and did some reading. I had a weeks worth of antibiotics and three days worth of a mild narcotic pain killer. Never did need the pain killer, Tylenol worked fine, used it in decreasing doses for about a week.

The most annoying thing is that for the first 48 hours there is a hard plastic shell strapped over your ear. It is stuffed with gauze and the strap is tight enough to leave a mark for about 24 hours after you remove it. I cannot describe how annoying it was and how glad I was to get rid of it. Once the ear was uncovered I noticed that I did have some residual hearing, no way to tell how much at that point.

I got luck, I have had almost no side effects. A little tinnitus that faded quickly, and was more of the wooshing kind then a tone. Taste was off for a bit, due to swelling around the facial nerve but that seems back to normal. I was a little unsteady the first couple of days, but I think that was as much due to the cup and gauze blocking the ear as anything.

Two week follow up with the surgeon, stitches are removed and he is happy. Now I wait for activation.

[pathurley]

One thing I noticed I missed, I was given the choice of which ear to implant as they were both candidates. I chose to implant the left, because despite recent tests, the right had always been my better ear and was the one I was used to listening with.

[pathurley]

So, finally activation day arrives.

First is an abbreviated audiogram just to see how the ear is hearing post implantation. I am mostly within 5 db of where I started, so almost all of my residual hearing was preserved. If you are looking for a CI surgeon in central NY I have a recommendation.

So then we start activation, it goes through a few steps, and then I get to start counting beeps. The idea is to establish my lower sensitivity threshold at that point, I am told this will change as the healing continues and my brain adjusts to the new input. There are 22 electrodes on my implant and each one needs to be set.

I am doing well again though, I have some speech understanding right away, but there was some high pitch noise that was causing problems, so the highest 2 electrodes were turned off for now so that I can start to adjust. Everyone is high pitched, as i described elsewhere kind of like robotic chipmunks. And it can be difficult to tell who is speaking with just the CI.

I was supposed to have a one week followup with more adjustments but we had a storm come through and I missed it. So next appointment is March 1st.

Meanwhile, I have noticed that my understanding has improved. I can go to meetings and concentrate on the topic and not just try to understand what is being said. I can watch lecture type videos without using the captioning much of the time, although I do cheat and use the multimic + to route the sound directly to the CI. I can sometimes understand my wife from another room.

I can understand the lyrics in music. Now that isn’t perfect, the music is obviously high pitched and singer’s sound wrong. Picture the Eagles as 5 year olds, Louis Armstrong as a tenor, and Joy to The World (Three Dog Night version) as sung by contraltos. But I can understand them.

I expect things to improve, but if this is all that I get, it is better then what I had with the hearing aids. Assuming that insurance approvals I am most likely going to get the other ear implanted as well.

So that is where I stand now, I will update this as things progress.

[pathurley]

For those who want technical details I have the Nucleus 7 processor and the CI632 implant.

[phobos512]

Thanks for all the deets Pat. Very interesting.

[Raudrive]

Yes, thank you so much for all this very helpful information.
It’s looking more and more like CI’s have a huge success rate.

[pathurley]

Like the manufactures I won’t make any guarantees. I think that so far I am near the upper end of the curve. I also believe that much like getting that first hearing aid, the longer you wait the more time and work it will take for results.

[phobos512]

So that brings up a question, you mentioned it was sometime in your 30s that you really notuced your hearing taking a turn…How long did it take you to go for the hearing aids and then the CI?

[pathurley]

I would say looking back that I became aware of the problem in 2002-03. It was almost certainly happening before that but it was asymmetric enough that the right ear could cover for the left most of the time. Like most my first problem was understanding people in background noise.

It was 2005 when I got the first hearing aid for the left ear, 2007 for the right. And then 2019 before I started on the CI. Of course none of the Audiologists I dealt with before last year worked with implants so I am not surprised they didn’t come up. Even my current one didn’t think I would qualify yet, but figured that based on my word scores that someday I would.

[dieslgrl]

That is crazy i thought the exact same thing!! Heres my test and i hear too good still. Getting frustrated bc my days are nothing but asking people to repeat themselves. I am in sales B to C so dealing with all types of different people and in a warehouse type space no less. Good luck. I should travel to see whoever cleared you!!

[pathurley]

If I am reading that right, it looks like your aided score might be high enough to disqualify you at this point. Most CI require at least 6 months of “well fitted” hearing aid use first, and if word scores with the aids are good enough them you don’t qualify for an implant.

Mine at least was a test down in noise. The form it was reported on was a standard for from Cochlear so I assume, at least for them, the test is standardized. I have read that all three have slightly different criteria from the FDA, and that is before insurance gets involved.

[Raudrive]

The 48 WRS score did it I think. Seems I remember 40 being the threshold.

When you were tested with hearing aids in, did they use your aids or did they program their own aids and test you?

[pathurley]

They were my aids, they did check to make sure they were properly set up, of course since they had just tuned them two months before that was mostly perfunctory.

[Raudrive]

Thanks,

Is this the way others have been tested during CI evaluation? I am curious which aids are used because it could make a world of difference how the test results end up.

[Deaf_piper]

@dieslgrl if your really struggling when you go for your CI assessment again, and you do the test with you HA’s in turn the volume down before you go in for the testing. Just guess some of the words instead of giving them the answers they want. Shhhh I didn’t tell you to do Any of that either…

I understand how jolly frustrating it is for you. Since I went bimodal my hearing life is a pleasure. Good luck.

[dieslgrl]

I struggle with the tests bc I can’t help but to try hard. If I turned the volume down to mimic real life listening then I’m sure it will be more accurate. That’s a great suggestion! I wouldn’t fail on purpose but I will try to not try so hard next time.

I do think it’s time to at least consider my left ear. I’ve met with Cochlear America’s and of course they are going to tell me in a great candidate. I click the button when I feel the beeps and I guess at words when I didn’t actually understand what they said.

My hearing aids do help but I still can’t understand words.

Didn’t mean to take over this thread but your story is encouraging! I’ve had more help from you folks on this board than any interaction online elsewhere so I really thank you guys!! I go back in six months for another eval and will try your suggestion. Maybe not guess and make the sounds of the word but only answer when I’ve truly heard the word(s). Here’s to hope!! Thank you so much!!

[dieslgrl]

I wore my own aids (which are Phonak m90 Marvel’s about a year old) The same office set them up. They are maxed out w/volume. My receivers are normal size (high power doesn’t fit inside my left ear canal bc of a funny shape.)

I go there bc my last AUD thought it was time for me to consider surgical solutions about three years ago. They just won’t clear me. Not that I want to hear Alvin and the chipmunks but I would rather not strain so much all day to understand words. My left ear is poop w/&without aids. When both ears are together my scores are higher, yes, but I’m guessing a lot and trying hard.
Another surgeon in this practice thought I would do great with the CI since my speech reading is fairly good. I’m almost 40 years old and am in shape/muscular. I wonder if my appearance lends anything to their assessment and ultimate determination for CI🤷🏻‍♀️ like, she’s strong, she can handle it?? But I guess you’re right about the 40 threshold, although I’m not sure I totally understand how to read the bottom of my test and what it means.