Today was the first visit with the audiologist since my activation. When my CI was activated a couple weeks ago, it was set up with five programs, each increasing in volume from the previous one. I started at program 1, and was supposed to spend a couple days on each, reaching program 5 before today’s appointment.

On day one, I wondered if I would make it — everything was SO LOUD, and the implant hindered my ability to understand speech rather than helping it; everyone sounded a bit like the adults in the Peanuts cartoons: “wa wa wa wa wa”. However, I did manage to get to program 5 this past Sunday, and my understanding is increasing as well. People still sound scratchy/staticky — as I’ve said, a bit like Gollum from the Lord of the Rings movies. But still, the implant is beginning to actually be helpful rather than a distraction. And my audiologist is pleased with my progress.

So today’s mapping was basically the audiologist triggering each of the 16 electrodes in my cochlea. I’d hear a series of beeps and she kept increasing the volume until I indicated that it was just on the edge of being too loud. Each electrode had a different frequency. So now I have a new set of five programs, again increasing in volume, which I’m supposed to get through in about a month. As before, right now everything sounds really, really loud, and normal sounds are startling me. But hopefully it’ll work the same way: my brain will get used to the new volume and I’ll be able to increase it. At least now I have more time; I can spend a week at each level if I have to.

In other news, the insurance company denied my appeal for coverage of the hyperbaric oxygen treatments for my other ear. Not exactly a shock, but still disappointing. I’m keeping on with them, though, in the hopes that they might help. So far they’ve only changed my distance vision: it’s actually better without my glasses now than with them. However, they tell me this is temporary and it should go back to normal once I’m done with the treatments. Guess I’ll put off that eye exam I’m overdue for until after that.

So, I continue to listen to audio books and TV streamed directly into the implant. I’m basically trying to do as much with just the implant as possible and only wearing the hearing aid in the other ear when I absolutely need to understand something. Luckily, Ray is okay with repeating things for me. (I imagine it does get annoying after a while, but he’s very patient.)

When I went in for a followup related to the new hearing loss, my ENT’s office ordered an MRI, since I hadn’t had one since 2014. I didn’t expect to put the “MRI-safe” thing to the test so soon after my implant, but then I didn’t expect another hearing loss episode, either. The hardest part was getting the appointment: the second she heard the words “cochlear implant”, the scheduler immediately said they would not do an MRI on me, even when I tried to explain that the model I have allows MRIs with some restrictions (which I could provide). I sent an email to the provider’s website explaining the situation and asking them to reconsider; I got a call back from a manager who was very apologetic. He had to contact AB and my audiologist, but he got the info and I had the MRI yesterday. It went fine; no problems. (No idea on the results yet, but I don’t expect them to find anything unusual; I’ve had them after hearing losses before. No one has been able to tell me why this keeps happening.)

Still no improvement in my non-implanted ear, nor any word from the insurance on whether they’ll cover the hyperbaric treatments (which I’m still doing every weekday). I did get my hearing aid adjusted for my new level of hearing loss, but volume and clarity are two different things and I still struggle.

Meanwhile, I can understand audio books with my implant. I keep the print in front of me for new books, but I don’t have to look at it very often. Podcasts and normal conversation (where the speakers aren’t necessarily professional readers and I don’t have captions or printed text) are more difficult, but I’m picking up more words all the time. And the implant is starting to be almost helpful rather than a hindrance to understanding others.

As much as possible, I stream things directly into the CI so my other ear isn’t trying (and mostly failing) to pick up the slack. We couldn’t get the TV Connect accessory to work, but Ray was able to connect the Roger Select microphone directly to the TV so it streams into the implant. And of course I can stream my phone into it as well to listen to audio books or podcasts. I’ve been listening to Harry Potter in the car since I know it well enough that it doesn’t matter if I miss a word here and there, and new books at home so I can look at the print if I don’t understand something.

My implant was set up with 5 programs, each increasing in volume, and I was supposed to progress through them by my next appointment in a bit over 2 weeks. When I got it, everything was so loud that I didn’t think I’d ever get past program 1. But today I went to program 5. As always after I go to the next one, everything is REALLY LOUD. My next mapping appointment is on Wednesday (I’m writing this on Sunday).

I’m understanding more with the implant. I am continuing to stream audio books to it, and I stopped bothering with ones I’ve read before, because I can understand enough that I don’t need them to be ones I know. Though I still have the print in front of me, most of the time I’m keeping my eyes closed; I only have to look at the text when they use an unfamiliar word or odd syntax. And when we watched the most recent John Oliver last night, I found that understanding it was easier with the implant (connected to a microphone near the TV) than with my other ear and its hearing aid, so I took the HA out and just used the implant.

I also downloaded the Angel Sound app. It basically has different voices saying words, and you have to choose the word they’re saying from a list of choices. I can consistently score anywhere from the high 80s to 100%.

All that said, understanding normal conversation is still a ways off. But I knew from the start that it would not be instantaneous.

Tomorrow I have another followup with the ENT, and supposedly I should also find out whether the insurance will cover the hyperbaric treatments. If not, I then have to decide whether I want to continue them, knowing I’ll be paying out-of-pocket. I probably will, because I feel like if there’s something that might help, I should pursue it.

Meanwhile, the weird (and longer) schedule I’ve had to adopt in order to fit the hyperbaric treatments into my work day is definitely taking its toll: I woke up this morning and immediately panicked because it was 7:30, an hour and a half past the time I should be up. Then Ray reminded me that it was Sunday.

Back to the doctor today for another hearing test in the non-implanted ear. No improvement from last week. Got another steroid shot. Back to the hyperbaric chamber tomorrow.

Implanted ear continues to be a hindrance to understanding people rather than a help. Today I could hear coworkers talking down the hall through the implant (though not the other ear); they sounded like Gollum from Lord of the Rings and I couldn’t understand a word. I’ll do some more audio book tonight; so far that’s the only time I can consistently pick out words with the implant.

The cochlear implant continues to be more of a distraction than anything. Some sounds are becoming clearer and more like what they should be, but most things still sound the same, and everything is too loud. If I block my other ear and someone talks, I can recognize it as speech and pick out a word or phrase here and there. But overall, between the distraction of the weird sounds from the implant and the new hearing loss on the other side, understanding others takes a significant amount of mental effort.

This initial mapping (that’s what they call programming the implant) contains five programs, each progressively louder. I’m on the first one and I’m supposed to progress through them as things start sounding more normal. So far that hasn’t happened: even on program one, everything is way too loud. I am supposed be at program 5 by my next mapping appointment, which is in 2 weeks. I have no idea if I’ll get there or not.

Meanwhile, I’ve been doing hyperbaric oxygen treatments for the sudden hearing loss in the non-implanted ear. So far I haven’t noticed any change, but it’s only been 3 days so far. Still no word on whether the insurance will cover it (they’re still working on appealing the initial denial), but I’ve decided that if I have to pay out-of-pocket, I will — if I don’t exhaust every possible treatment option, I will always wonder if there was something else I could have done. But it’s also a huge time suck: two hours a day plus travel time to get there and back, in addition to working a full day. They told me to come in on the weekend as well — normally they aren’t open then, but they really seem to think this will help me and they’re making an exception for me.

My husband once commented that I’m one of the most resilient people he knows, and I’m coming to realize more and more that he’s right. I have had my moments of despair during all this, but now that the initial shock is over, I realize that I will get through it. For the moment I’m focused on learning to hear with the implant and getting treatment for the new hearing loss in the other ear, but whatever happens, I will deal with it. Living with a hearing impairment is hard, no question. But I will get through this, and one way or the other I’ll learn to live with it if I have to.

At long last, today my implant was activated.

I had done enough research to know that this was not an instant “boom, you can hear!” solution. But none of that could really prepare me for what it is actually like. And since it’s different for everyone, reading this probably won’t prepare anyone else for their own experience, but I’ll do my best to describe it.

So after putting the processor on, the audiologist started turning on the electrodes in the implant in groups of four, telling me to tell her when I could hear anything at all. It was basically beep-like tones that increased in volume as she turned them up.

Nearly everything over a certain volume sounds exactly the same: an electronic “woo woo woo” sort of beepy sound with no variation in pitch. There’s a very few things that don’t sound like that: the clicking of my keyboard, my car’s turn signal, other cars whooshing past on the road. Those sound strange but closer to what they should be, though with an echo-y quality.

So now my job is to just wear the thing. I’ll try it with some audiobooks as well, reading along.

Naturally, because the universe really hates me, someone decided to schedule a work meeting immediately after my activation. Needless to say, the weird sounds in the implanted ear plus the sudden hearing loss I’ve been dealing with in the other ear made it insanely hard to understand what was going on.

I feel like my life has been nothing but my ears for the last two weeks, and to a slightly lesser extent, the last month (as it’s a month exactly since my surgery). Nearly every waking thought concerns how I’m hearing, both with the implant and with my (formerly) good ear. I’ve just finished my last dose of oral steroids for this latest hearing loss, and will probably have another shot in the ear on Monday, and I’ve been getting hyperbaric oxygen treatments as well (still no word on whether the insurance will actually pay for them). So far I haven’t seen much difference, although I’m at least not feeling as hopeless as I did last week.

I really, really want to go back to normal again, and not have my hearing be the center and focus of my life.

Edited to add: I just tried streaming an audio book directly to my implant while reading along with the text…and I could actually follow the words I was hearing! They’re not clear and sound robotic, but I could tell where I was in the text, even when it got a little ahead because I lost my place when Ray came to talk to me!

It’ll still be a long road to being able to understand what people are saying to me, but this is only day one. I’m excited!

One-week followup visit for the new hearing loss was today. Hearing test showed no improvement in the part with the beeps, but my speech recognition increased, from 12% to 44%. Ray thinks it’s because my brain is getting used to the difference; hard to say.

They gave me another steroid shot in the ear (which was about as much fun as the last one), and also recommended hyperbaric oxygen therapy — basically, they’re going to throw anything that might possibly work at this, and at this point I’m willing to try anything. However, there’s a question about whether the CI on the other side can handle the pressure, especially so soon after implantation; they’re calling AB to check that. Also, there are two places in the area where they can do the treatment: Inova Fair Oaks or Georgetown. Fair Oaks is way closer and more convenient, but apparently there’s only one person there who’s authorized by my medical insurance to run the chamber, and that person is on vacation this week, so since time is critical, I may have to go all the way to Georgetown. What a great freaking country the USA is! I may end up maxing out my sick time this year and going into unpaid leave because we have such a wonderful health care system.

I will say that all my medical practitioners have been great. They realize the seriousness of this and I feel like they’re doing everything they possibly can to help me. I just hope it’s enough.

Meanwhile, we visited parents in NJ this weekend. Long as whoever was speaking to me used my streaming microphone, I could understand them, so it was okay. But we took them out to dinner and brunch, and the noise in the restaurants was a bit exhausting for me. Noisy places are definitely still not fun.

I should not have decided to go ahead and host our biweekly board gaming night so soon after this hearing loss happened to me. While I love my friends and I was happy to see them, it was a little bit too much for me.

I can’t adequately describe how horrendous my hearing situation is right now. In a quiet setting, it’s bearable; there’s some tinnitus (a low, constant humming sound) but that’s basically white noise. With my hearing aid in, I can hear many of the normal background sounds — water running, Ray puttering around, the microwave beeping, horns honking, the keys on our keyboards clicking — and none of those are a problem. (Without the hearing aid…well, I hear a lot less, though not nothing.) I can have a conversation with Ray as long as he’s either very close to my ear or wearing the microphone that streams directly into my hearing aid.

Tonight was the first time I’ve been in a noisy setting since this happened. I have the microphone, so I was hoping that would help, and it did — as long as there wasn’t too much other noise in the room…which was almost never, since we had something like 10-12 people over. I put the microphone in Surround mode in the middle of the gaming table so I could hear everyone, but the result was both way too loud and still incomprehensible — not unlike being at a concert where the volume is so loud that all the sound is distorted. It was like listening to a dozen people through a badly-tuned, loud CB radio. It was maddening and exhausting and if this is my new normal, I am going to have to avoid social gatherings in the future. Every time someone laughed or made a loud exclamation during our game, I thought my head was going to explode…but if I turned the volume down, I couldn’t understand a word. And if someone was trying to talk to me, if there was even one other person talking nearby, I could not understand a word, even if they were using the microphone.

I will discuss all this with the doctor and audiologist on Monday, but I have no idea if there’s anything that can be done. I am terrified that this is how I’m going to have to live from now on.

I feel like I should rename this blog, considering how much it’s derailed from the original topic, but I don’t know what else to call it. There will be more about my cochlear implant here once it’s activated, but for right now the all-consuming thing is this new and unexpected hearing loss episode that has me reeling.

This story is not going at all the way I figured it would. I was expecting that after the post-op check, there’d be nothing else to report until my CI activation date, which is still over a week away as I write this. I so wish that were the case.

There continues to be no improvement in my right ear, and in fact now there’s the added joy of tinnitus in the form of a low-pitched but loud humming sound that drowns out a lot of outside sound. My hearing aid helps some, but as happened with the left ear before the implant, an increase in volume does not equal an increase in clarity, and I still struggle to understand speech. I had to ask my coworkers to limit contact with me to chat or email until further notice; luckily, I don’t have a job that requires a lot of face-to-face interaction (I’m a software developer), but I’m still not sure how this will work long term if it comes to that.

There is a little bit of good news, though. I have a device called a SurfLink which allows streaming from Bluetooth devices directly to my hearing aid. It also has a microphone, and I discovered that if I have someone talk into it, I can understand them a lot better. Not perfect clarity by any means, but good enough to have an actual conversation as long as they’re patient about repeating things I miss. I was able to have a conversation with a coworker today using it, at least. And it’s possible that when I go back in for another hearing test on Monday, they can adjust my hearing aid for how my ear is now — it’s still programmed for the way it was last year.

The people in my life have been really amazing. Several of my friends offered to take ASL classes with me if it should come to that, and of course Ray has been an absolute sweetie. One of my coworkers offered to take live notes at a meeting on the projection screen so I could follow along. I hope they don’t run out of patience with me eventually, but their support means everything to me. I will see some of them on Friday night for our biweekly game night; I was going to cancel it, but I decided that isolating myself when I need support the most is probably a bad idea. Can’t deny that I’m nervous, though. I’ve largely avoided social interaction this week.

Everything sounds weird to me now, and it’s odd what I can hear and what I can’t. I can hear water running, the microwave beeping, and the car’s turn signal clicking (as long as the A/C fan isn’t too high), but I can’t hear the white-noise machine we use at night unless I put my ear directly on it. I can hear people talking, but not understand what they’re saying unless they’re standing really close or speaking into the SurfLink. The sounds I do hear are all distorted; for example, the little “boop” sound that the AppleTV makes when you scroll sounds like a much lower note with static running through it. My own voice sounds robotic and distant, and I’ve been making a conscious effort not to talk louder. When Ray sneezed a couple of days ago, I heard the noise but could not identify what it was until he told me. Music sounds strange and wrong. I can’t use the phone at all; I couldn’t even listen to a voice mail — had to get Ray to do it. (I’ll admit that this is not a huge tragedy to me as I hate the phone, but I do feel guilty about having to have Ray make all my calls for me.)

It’s only been a few days, so maybe you get used to it. But for now, it’s maddening.

The worst part is the uncertainty. I don’t know the success rate of steroids for sudden hearing loss; the only site I could find that referred to it said about 40%, but I have no idea how accurate this is. I know they did help me once, but no idea if they will again. If the CI doesn’t work for me, this may be my new normal…or I could get worse and go completely deaf. I hate not knowing.

I have been dealing with hearing loss in some form for the last 18 years, but this is the first time in my life that I’ve really felt like it’s a disability. Oh, I’ve done plenty of faking — pretending I understood what someone said because I didn’t want to make them repeat it a third time — but even the occasional times I’ve been caught at it (like answering the question I thought they asked rather than the one they actually did), I’ve always been able to laugh it off. But now…now I’m almost deaf. And I don’t know how to live deaf. And it’s scaring the shit out of me.

All I can do now is wait. Wait to see if the steroids work. Wait for the CI activation and do every rehab exercise they throw at me. And try not to think too much about what my future will be like if I end up staying like this or getting worse.

I know I’m derailing from the cochlear implant story right now, but I need to vent, and hell, this is my blog so I can do anything I want here.

Over the course of the weekend, the hearing in my good ear got worse, although I started taking oral steroids on Saturday evening. Saturday afternoon, I could use the phone — not with 100% understanding, but enough to get by. By this morning (Monday), I couldn’t understand a word. Before this happened, I could understand Ray from across the room without my hearing aid; now, I can only understand him with the hearing aid, and then only if he’s standing right next to me and talking really loudly.

I called (or rather had Ray call) the doctor’s office first thing this morning and got an appointment. Had a hearing test which confirmed the significant drop in the right ear; my speech recognition percentage, which was 84% at my last test (last October), is down to 12% — which is about where my left ear was before I got the CI.

The doctor told me to continue the prednisone, and he also gave me a steroid injection directly in the ear. Even with a numbing cream that he put on 20 minutes before the injection, it hurt more than any pain I had after the CI surgery. Thankfully, the pain abated after about 5-10 minutes. They made me stay lying down for 15, and I was a bit dizzy when I got up, but feeling okay now (about 5 hours later).

I realized after we got home that they hadn’t told me when I could put the hearing aid back in, so Ray called to ask. First the nurse said it was fine, but then she called back and said she wasn’t sure and would have to ask the doctor since there’s a hole in my ear and the HA would be blocking it. So I’m temporarily almost completely deaf while we wait. Ray has been having to talk to me via text or typing into a window on his computer while I read over his shoulder. I can barely understand my own voice, let alone his.

I’m supposed to go back for another hearing test next week, and I’ll have to have another injection if there’s no improvement — possibly up to 3 total depending on how things go. Meanwhile, the CI activation date is still set for the 16th.

Before this happened, my attitude about the CI was fairly blasé; I figured that if it didn’t work well, I’d be no worse off than I was before, with one ear that worked and one that didn’t. But now…if the steroids don’t help, the stakes just got a whole hell of a lot higher for the CI. Because I guess the universe decided that my story needed some drama.