Quick note: Lately there’s been an increase in spam comments. Since I don’t have many readers, ALL comments here are sent to me for approval before being posted, and I delete all spam comments. Knock yourself out posting them if it makes you happy, but no one else besides me will ever see them.

My second CI was activated yesterday. Because my clinic is a 2-processor one, I was able to get two Marvels, which is AB’s new processor. I ended up getting the Sky processor, which is the kids’ version, because I liked the colors better. I was able to get my two favorite colors, blue and purple. Since each processor only works on a specific ear, the different colors help me to easily tell which is which.

But anyway, activation. Since I was getting two new processors, my audiologist asked me which I wanted to do first, and I chose the newly implanted ear. After figuring out what magnet size I needed (a 4 — I use a 2 on the other side, but I think I may still have a little bit of swelling from the surgery; hopefully I’ll be able to go to a less strong one eventually), I put on the new processor and she started turning on the electrodes. When she was happy with the levels, she set up the left one. For right now I just have one program on that side, the new AutoSense. It’s supposed to adapt based on your environment, but I haven’t really been able to see how that works yet since it’s only been a day and I haven’t really been anywhere but my house and office (which are both quiet).

When the right side was turned on, it sounded pretty much the same as the left side did when it was activated 2 years ago — words sounded like beeps. With the first one, that lasted a couple of weeks, and during that time I was gradually able to pick up more and more words out of the beeps.

With the second one, it’s been much, much faster. It’s only been a day and I’m no longer hearing beeps, and I can understand words. Voices don’t sound normal yet; they sound the way people sound on TV or radio when their voices are deliberately distorted to conceal their identities. But they’re understandable, which is huge for one day after activation, so I don’t mind too much!

After both processors were turned on, we paired them with my iPhone and with the AB Remote app. I can stream from the phone, and adjust the volume and the streaming/mic balance using the app. This is a nice improvement over the Naida Q90 processor I had before; I had to get a special program for streaming on that one so I wouldn’t have to hear the sounds around me while streaming. Now I can adjust that on the fly. The one annoying thing: you can’t adjust the mic balance unless you’re actively streaming, so I had to figure out how to do it while watching a video, since as soon as you leave the video app, the streaming stops and the balance option disappears. You also can’t change any of these settings while in a phone call.

I spent yesterday evening streaming audio books and videos on my iPad. I’m already able to follow them without needing captions or text. I’ve been using just the right processor most of the time so I can give the newly-implanted ear practice, without relying on the left one. So I am very, very happy with how the new CI is working so far!

I did have to call AB today because one of my batteries turned out to be defective. It worked for a little bit but then stopped, even though the charger light is green. It’s not the processor because the other battery works fine with it. I did get disposables, so I can use those until I get the replacement battery from AB. It’s obviously still under warranty one day after activation. And as I said, I’ve been trying not to use the left processor unless I absolutely need to understand someone, just to give my right ear practice.

Had the post-op check today. My surgeon wasn’t available so I saw a different one. He seemed a little concerned that I have more swelling than I should at this point, but he saw no signs of infection, so he said to just keep an eye on it and call the office if I start feeling worse. I have another followup scheduled with my actual surgeon on the 19th.

This surgery is definitely kicking my butt more than my first one did. I had more pain over the weekend, though not enough that I regretted not getting the painkiller prescription filled — Tylenol still did the job. There’s been less pain yesterday and today. I was also tired and spacey all weekend, so I didn’t do much. Feeling a tiny bit lightheaded sometimes when I get up, and it’s still annoying as hell to have only one arm on my glasses. And I still can’t taste anything on the right side, so I’m eating less as meals aren’t as enjoyable.

Brought Ray to the doctor with me to be my ears, since I’ve been struggling more with just the CI than I did with both it and the hearing aid. Having him with me was definitely helpful, so he’ll be coming with me to the next one as well.

Hope this unexpected swelling resolves itself soon, because I suspect that my activation could be delayed if it doesn’t.

I did end up going into the office yesterday, just 2 days after my surgery. Still feeling fine; the right side of my head is tender and I’m getting some twinges of pain, but they’re pretty mild and they go away when I take Tylenol. If I had a more physical job I’d have taken more time off, but sitting at a desk all day is not exactly taxing, so it wasn’t a big deal.

The hearing in my right ear was not very good before (hence the second implant), but now that it’s completely out of commission I’m realizing how much I was actually depending on it. My CI ear was definitely better, but I could hear much better with both it and the hearing aid than with either one on its own. So now I’m hearing only with the CI and it’s definitely more of a struggle; I’m missing more during conversations with only one ear in play. Of course this is only temporary, until my second CI is activated, so I can deal with it for a month (plus whatever ramp-up time the second one requires).

Being completely deaf without my processor on is seriously disconcerting. My right ear wasn’t that great, especially with no hearing aid, but it did still have a little bit of hearing. But now when I take off my processor, there’s absolutely nothing at all.

Having eaten a few more meals since my surgery, I now realize that I can’t taste anything with the right side of my tongue (same side as the new implant). It’s definitely making meals less enjoyable, though I’m getting better at chewing on the other side. I do hope it’ll come back, though.

The other thing that’s been driving me nuts is having only one arm on my glasses. I definitely do not want to put the other one back on yet, because the incision is nowhere near healed and as I said, that side of my head is pretty tender, but my glasses don’t sit right and they get smudged more easily. Again, I keep reminding myself that these are temporary annoyances and I’ll forget all about them when this is over. It was about 2 weeks after my first CI surgery that I was able to put the arm back on my glasses without it being uncomfortable, and that’s not a huge amount of time.

My newly implanted ear is also really numb at the top — can hardly feel it at all when I touch it. The left was a bit numb too, but I don’t think it was quite as bad. But the left feels normal, or nearly so, now, so hopefully that’s another thing that’s temporary.

As happened with the first implant, I had a lot of trouble getting to sleep last night, though I eventually did (which was an improvement from last time). Still, I stayed home and took it easy today, especially since I had to leave the ear cup on for 24 hours. It was so uncomfortable that by the end I was counting the minutes until I could take it off…I’m convinced that the little pain I was feeling today was due to the pressure from the cup.

But, the 24-hour mark finally came and I took the thing off. That alone felt great, but even better was being able to to shower and wash my hair, which was all crunchy and gross. I felt 1000% better after that.

My sense of taste continues to be weird, but it’s only been a day so I guess I can’t expect it to have resolved itself already. I also tried testing our smoke alarm while not wearing my processor, and unfortunately I couldn’t hear it at all, which is a little depressing since I don’t sleep with my processor. Of course Ray will wake me if an alarm goes off, and he’s also rigged our home automation to turn on the lights, so the only time we should really need to worry is on those very rare occasions when I travel without him. I think the last time that happened was in 2018 when I went to a work-related conference, so yeah, it doesn’t happen often…and there are deaf-accessible hotel rooms which will turn on lights in the event of an alarm, as well.

Called to make my activation appointment today, and it turns out I should have called earlier — I planned to make an earlier appointment to get the new processor for my first implanted ear, but the audiologist is booked solid. Still need to figure out when to do that, but I do have my activation appointment for the new implant on July 28th.

I had been planning to work from home the rest of this week, but I may go into the office tomorrow, as I feel fine.

Today I got CI #2. My surgery time was supposed to be 1:30pm with an arrival time of 11:30am. This was a mixed blessing: while I did get to sleep in a bit, I was not allowed to eat or drink, so by the time I got there I was starting to get pretty hungry.

Anyway, we got to the hospital and checked in at the surgical center. Ray had to help me by being my ears and either answering their questions or repeating them to me (because I understand him better than anyone) — between the masks, the bad acoustics, background noise, and the Plexiglas barrier, understanding wasn’t easy. But with Ray’s help, I managed.

So after 10-15 minutes we were called back (thankfully they did let him in; we weren’t sure they would due to COVID). They wanted me to pee in a cup to prove I wasn’t pregnant, but I’m like, “You told me I couldn’t eat or drink; I really don’t think I have anything at all in my bladder now.” I was allowed to sign a waiver instead.

Back in the prep area, I put on the gown and socks, and had to ask for underwear and a pad as well — by some weird quirk of scheduling, I managed to have my period for both of my CI surgeries. But the nurses didn’t bat an eye; I’m sure they’ve seen and heard everything.

Then several nurses came in, one at a time, all asking me basically the same questions, like what procedure was I there for, any medication allergies, that kind of thing. Ray had to help me some more there, thanks to background noise and the fact that women’s voices are harder for me. But we got through it. They marked my right ear with a Sharpie to make sure they’d operate on the correct one, took my vital signs, and inserted an IV line (not yet hooked up to anything) in my left hand.

Then it was just a whole lot of waiting, and more waiting. The anesthesiologist came in to talk to me for a few minutes, to go over what would happen and verify that I don’t have any bad reactions to anesthesia. The surgeon also came in to give me the standard warning about possible side effects (they work very close to the facial nerves, so things like facial paralysis and loss of taste are a possibility, though they’re rare) and ask if I had questions. I mentioned how last time I was unable to sleep the night after the surgery and he’d told me it was the steroids they gave me, so he said they’d give me less of that this time. And then it was more waiting.

At a little after 2, I gave Ray my glasses and they wheeled me off to the OR. They let me keep my left CI processor on so I could hear them. Just before they wheeled me out, they gave me a shot in my IV to “relax” me, so I was already starting to fade a little by the time we got to the OR. I scooted from the gurney to the OR bed when directed, then they put a plastic mask over my mouth and nose, and took off my CI processor. Unlike previous times, I didn’t even know when they gave me the anesthesia (usually it stings going into my hand from the IV).

And then I woke up in Recovery. It was 4:40pm, so the surgery took about two and a half hours. A nurse came over to see how I was doing and I asked for water since I was incredibly thirsty. I drank two cupfuls and then they brought me over to another small cubicle where there was a chair. I got up and went to sit, and they brought Ray back in and gave me my clothes. I dressed and sat down again, and they removed the IV line and confirmed that I was feeling okay. They validated Ray’s parking ticket and told him to bring the car around to the front entrance. I was brought there in a wheelchair and we went home.

I was feeling some mild pain so I took some Tylenol and it’s better now. Ray went out to get us dinner; by that point I wasn’t really hungry but ate anyway since I needed the fuel. I did drink 5 more big glasses of water, though. No dizziness, no taste issues or other problems. The ear cup is uncomfortable and my hair is crunchy, but I feel pretty normal aside from that. They gave me a Z-pack (antibiotics) so Ray went to get that filled. They also gave me a painkiller prescription, but the paperwork was such a hassle (thank you, opioid epidemic!) that he didn’t bother with that one, especially since last time I only took one of them in the hopes it might help me sleep that first night (it didn’t). If I have worse pain than before, he’ll get it filled, but hopefully there will be no need.

And so now it’s just the healing. I’ll make an appointment for a couple of weeks from now to get AB’s new Marvel processor for my left ear (the one already implanted) — my clinic gives 2 processors so you have an extra as a backup but I plan to use both and keep my current pair as backups instead. So I’ll get the one for the left ear first, then have a regular activation appointment for the newly implanted right side.

So, surgery #2 is done. Post-op checkup appointment is in a week.

Edited to add: I was not entirely correct above when I said “no taste issues”. I can taste things, but not near the tip of my tongue, and that area is also a tiny bit numb. I’ve read enough to know that this is a possible side-effect of CI surgery, and that for most people the taste does come back eventually, though exact times vary. Obviously I will mention this to the doctor, but if it does end up being permanent, it’s something I can live with since, as I said, I can still taste things, just not with my entire tongue.

Advanced Bionics just published my story on their blog: https://advancedbionics.com/com/en/home/contact-us/blog/my-ci-saved-me-from-constant-fears-mancuso.html

It’s much the same story I’ve told in the course of this blog, but much more condensed.

After my hearing test last month revealed that my non-implanted ear had gotten worse since my last test in summer 2019, I scheduled a cochlear implant evaluation for that ear, which happened a couple weeks ago. It wasn’t a total shock that the audiologist said I qualified for a second CI. I saw the surgeon last Friday, and today I got the call from his office telling me that my health insurance had approved it. (I’m amazed that it happened this quickly; with my first one, I saw the surgeon in March and didn’t get the approval until May.) My surgery is on June 29th. I will be going with Advanced Bionics again, of course; since my clinic provides two processors, I plan to use both of them (one for each ear) and keep my Q90s as backups in case anything happens to the Marvels.

I do hope they can preserve at least a little of my natural hearing this time (they didn’t last time, but there wasn’t as much left in that ear by the time I got the CI there), just enough so that I’ll wake up if a fire alarm should go off while I’m asleep and not wearing my processors. As long as Ray’s with me I’m not too worried, but there are (very rare) occasions when we spend a night or two apart, usually if one or the other of us has a work conference or something. But he’s rigged our home automation to turn on all the lights in the house if a smoke alarm goes off, and hotels have deaf-accessible rooms if I’m the one traveling, so I think I’ll be okay even if I do lose all my residual hearing.

So, in two months I’ll be bilateral. And so I’ve changed the name of this blog since “Single-Sided Cochlear Implant” will no longer apply.

Today I got to try out the new AB Marvel processor. My audiologist had invited me to try it in exchange for letting her practice programming it. She had an AB rep there to go through the programming options with her. (Clarification: I have not gotten a new implant, nor do I actually have a Marvel. This was just me trying it out in my audiologist’s office while she learned how to program it.)

This is obviously not a comprehensive review because I only got to try it for about an hour and a half total, and that was in a quiet office setting. But still, better than nothing, and I was at least able to get an impression of how it works.

The overall sound quality did seem slightly clearer than the Q90, but of course it still wasn’t nearly as clear as natural hearing. (I know, that’s not something any CI is capable of at present, but I can dream for the future!) It definitely sounded louder, although she set it up with basically the same program as I had on the Q90.

I had downloaded the AB Remote app on my phone, so the AB rep showed me how to pair it with the processor and stream. I was able to adjust the mic/aux balance with the app, which was very nice — this means that I would not need a separate streaming-only program with 100% aux and 0% external microphones. I asked about music, and the rep said that they had added in specialized music settings, so I tried that with a song that I had had trouble with: Queen’s “Bohemian Rhapsody”. The piano notes at the beginning have sounded wrong since I got the CI, so I tried streaming it to the Marvel and it was much closer to how I remember it.

One thing I really liked was how responsive it is – it took only about a second or two, tops, to turn on, as opposed to the five seconds or so my Q90 takes; program switches are similarly much faster. And it has an actual mute button — with the Q90, I have to take it off. (Edit: Apparently you CAN mute the Q90 by holding down the program button for 5 seconds. I had no idea!) And being able to see how much battery is left is another nice feature of the app, as with the Q90 there’s no way of knowing until it starts to get low (in which case it beeps periodically).

The other thing I really wanted to try was their new AutoSense 3.0, which is supposed to help with background-noise situations. But that was nearly impossible to test in a quiet office. I did try doing an iAngelSounds word recognition test with background noise, and I got 88% correct, but then I tried the same thing with my Q90 and got the same score, so I don’t feel like I have enough data to judge how it would work in a real-world noisy situation.

But, I’ve set up an appointment to get my other ear evaluated for a second CI. It hit me again today how bad my non-implanted ear has gotten: my husband and I were both on the sun porch working, and he had a video meeting so I took off my processor and hearing aid so I wouldn’t have to listen. He was maybe four feet away from me; at that distance I used to be able to hear his voice as a low buzz with no CI or HA — I could tell it was him talking but I couldn’t make out the words. Today, however, I couldn’t hear him at all.

Those who have been reading my story since the beginning may recall that in the summer of 2019, almost exactly halfway between my CI surgery and activation, I experienced a sudden loss of hearing in my right ear (the non-implanted one). After treatment it ended up at around 40% word recognition; in the tones, I was at around 50-60 dB in the lower frequencies and around 100 in the higher ones. Normal is generally around 25dB or below — that’s basically how loud a sound has to be at that frequency before you can hear it.

I had been feeling for a while like my right ear had gotten worse, but it was hard to tell for certain because the CI side is now my dominant one. I did notice that I struggled more with understanding if I wore just my hearing aid without the CI processor, but I couldn’t quantify it.

I had not been back for a hearing test in 2020 thanks to the pandemic, so I had one today, and it turns out I was right: there has been additional loss in that ear; I have no idea if it occurred suddenly like the other three because I just don’t rely on that ear anymore. But it’s down to about 16% word recognition and 70-80 dB in the lower frequencies (still around 100 in the higher ones).

So I am now planning to get evaluated for a second CI sometime in the near future. I will probably wait until after I get my second COVID shot — I had my first one yesterday so that’ll be a few weeks from now.

In other news, I am going to get to try out AB’s new Marvel processor next week. Unfortunately I don’t get to take it home, but my audiologist says I can come in and try it out in exchange for letting her practice programming it. I’m fine with playing guinea pig for a chance to see what the new processor is like! My plan all along has been to see what others think of it (and try it out if I get the chance), and either look into going bilateral or else consider paying out-of-pocket if I think it’s worth the cash. Given my latest hearing test, it’s looking like option 1 will be the winner here, although of course there’s always the chance my insurance won’t approve it. But anyway, I’ll report back after I try the Marvel, which will be next Tuesday.

If I do get approved, I guess I will need to change the name of this blog.