Surgery August 21

[Jewel]

Hello everyone, 

I saw the CI surgeon earlier. He said I would have a better chance of success if I do my better ear. This was unexpected as back in January he had selected the worse ear to do. But in our conversation today I told him that insurance is not covering my surgery. He thought that I would have been able to do my second ear if there wasn't much success with the first, but realising that I may never be able to afford that, he changed his mind. He did say that the final decision is up to me. 

I have decided to go with the better ear but I must say it pains me to be doing that one. I'm wondering how I will be able to manage at work before and after activation. 

I'm starting to feel very emotional about this all of a sudden. 

[Mary Beth]

Hi @Jewel

 

Feeling very emotional is completely understandable.  

Let’s see what ideas we can come up with to help you between surgery and activation.  These will need to be speech to text ideas, right?

 

The iPhone allows for speech to text in notes.  I met a woman last month who uses that at banks, restaurants, etc.

 

AVA is an app for speech to text.  Works with multiple speakers as long as they each download the app and have their phones nearby.

 

SpeakSee is a startup that is speech to text with multiple speakers.  They each clip on a color coded small mic and it displays who says what.

[sassychele02]

@Jewel Hi ladybug! AVA is a great app as @Mary Beth listed. Deaf helper is an ok app. Sending hugs you have every right to feel emotional. :). I also wanted my worse ear implanted but was recommended also to do my better ear because of greater chance of success. I know it's all overwhelming at times. You have such a great support group here. I'm 2 weeks out from my CI and rarely venture out since my lip reading abilities aren't  as good right now.  I was provided a loaner ASD that captions speech on my laptop. 

[Mary Beth]

@Jewel

 

Here is a link to more speech to text options 

 

https://www.ikream.com/2018/08/5-best-free-speech-text-transcription-apps-iphone-25610

[Daniel the Stranger]

Hi Jewel, any reason why you chose the better hear?

[Mary Featherston]

@Jewel - that's a big decision and I can understand completely why you're nervous.  I was very nervous about going bilateral at once for that very reason, not knowing what the outcome will be, and I had my bad ear implanted in the first surgery.  Three months later I get SO MUCH BETTER HEARING from that ear, it's leaving my "good" ear in the dust.  But I also know that outcomes favor an auditory nerve that's been receiving stimulation.  My "bad" one did, even though it didn't get me much in terms of functionality.  Have you been using one hearing aid, or two? 

In general, though, people with sensorineural loss just seem to succeed with CIs and I'm betting you will too.  I participate on those Facebook groups for CI users and the one thing I've noticed is that the people who don't do well seem to be people who think you can be passive and the CI will change your life.  It will, but it will be much much better if you work at it.  And you have that motivation.

Hang in there! 

As for work - what kind of work do you do?  Do Mary Beth's suggestions help?

[Jewel]

@Daniel the Stranger

He said that if my ear has not been stimulated for 15 years then the outcome may not be as good as if it was stimulated up to now. Also, I can only afford one ear so he would prefer to give me the best chance of hearing better. 

@sassychele02what is ASD? The CI center loaned you? That's nice. Don't think they would allow me to take that to Jamaica! Do you think your lipreading skills have deteriorated since the surgery? You're back at work?

@Mary Beth

Thanks for those apps. I have used Speechnotes for webinars and it was pretty good. But when I tried it with coworkers it was a big fail. 

I don't know whether the apps you mentioned will be of much use to me. For the most part my coworkers aren't helpful. And my inability to hear just strengthens the case to get rid of me. But I will see what apps are available in Google Play and try. 

@Mary Featherston

I'm in internal audit. We do a lot of special requests. Coworkers do the first round and then I check their work and correct same. I get mocked at work behind my back. 

I have to attend Audit Committee meetings and present orally to the committee. The hard part is I can't hear much of the meeting and I look like a fool when they ask me questions and I have absolutely no idea what was said. I don't think the people on that committee would be amenable to downloading AVA just for me. 

I have such a meeting in October. Needless to say I'm not looking forward to it. 

[Jewel]

Btw I'm getting the Synchrony Pin Flex 28/24 with the Flex Soft as the backup. 

@Mary Beth

No xray will be taken. And I will know which one I got when I wake up. 

[Mary Featherston]

Ha, @Jewel - I didn't get an x-ray either, I was kind of bummed after seeing Kara's.  I suspect the ASD that @sassychele02 referred to is captioning services. 

I'm sorry your co-workers aren't supportive, that does make it harder.  Just look forward to having your CI and your hearing.  Someday all those who are  uncooperative may end up working for you!

[Mary Beth]

@Jewel

I’m sorry your coworkers are not supportive.  Hopefully after you are hearing better with your CI, those relationships will improve.  I have a feeling they will be surprised at their prior assumptions once you have equal access to communication.

I have not relied on any speech to text apps so I can not offer first hand experience.  I have tested out AVA.  It’s effectiveness varies.  I have been at conferences which use live or remote live CART services and they have been terrific.  The InnoCaption app for captioned cell phone calls while you are in the US may be helpful.  InnoCaption is a great service.

Your surgeon wants to give you the best odds that your CI experience will be wonderful.  I understand that and I also understand your hesitancy to implant your better ear.  It’s a lot easier living in a country where most health insurance plans cover bilateral CIs.  We do have members from countries with national health plans that only cover one CI for most adults.  Those members have been in a similar position as you.  A friend recently went ahead and implanted her better ear, even though her other ear heard nothing.  The time between surgery and activation was interesting (she used lip reading, writing, phone speech to text  and apps) but she doesn’t regret it at all.  She is doing amazingly well with her CI and it did not take her long to be hearing better than she had been with her HA.  I hope the same for you.

Now that your pre-op is finished are you vacationing a bit before your surgery?  If so, I hope the weather cooperates and you have an enjoyable time.

[Mary Featherston]

@Jewel - I'd be interested to know if you get a gown like this one - this is me on the day of my surgery last April, and the gown is one of my company's products, it keeps you warm in pre-op and in the operating room.  I was on the design team and managed the contract manufacturers that made it for us for years until the production was brought in-house.

It was beyond cool to get to use my own product for my surgery, and it would be gratifying to know that you and others here got one too.

 

[Jewel]

@Mary Featherston

I will let you know if I'm fortunate to wear one of your gowns. It would suit me well cos I'm skinny so I'd freeze in the operating theater! 

@Mary Beth

Thanks for sharing your friend's experience. No I won't be vacationing. I'm really tired so I'm just gonna rest up. If all goes well, I think i will explore Miami when I'm here for a week following activation. 

[Jewel]

Looks like I forgot to mention that the surgeon plans to use the Synchrony Pin Flex 28/24 with the Flex Soft as a backup. Need to refresh my memory about them. 

[Mary Beth]

@Jewel

 

 

[Mary Beth]

[Mary Featherston]

@Jewel - same implant that I have, and I also have the Flex 28.   It will be great!  Also, if you are worried about the size of Sonnet, don't be.  I actually have less discomfort with Sonnet than I did with my hearing aids.  I believe it's because you don't have the ear mold or the wire going to it.  I used to have a groove at the top of my ear from the wire, and the skin in my ear was always bothered.

The Sonnet just sits there, I am not generally even all that aware of it. 

Rest up and be ready for surgery!

[Jewel]

@Mary Featherston

The Sonnet with the Roger on it looks really long. Is that the one you're wearing? 

I am looking forward to not having a mold inside my ear. 

I have been enquiring from my Med-El rep and the CI center whether I will be benefiting from the PLUSRONDO promotion. I have been asking for weeks and no one has clued me in. I would be very disappointed if they don't give me a voucher. 

[Kara of Canada]

DOnt worry too much it’s very overwhelming st first because it’s all new and uncharted territory. Once you learn how things work it becomes second nature. I love not having anything in my ear as well. Ok so Sonnet is a tad heavy at first. But I have two on my head and don’t feel either. So chin up. All will be well. ?

[Mary Featherston]

@Jewel

[Mary Featherston]

Sorry about that, the page did that thing where your cursor ends up in the tagged name (or, as I found myself calling it in this case, the Jewel box) and you can't type.

I can't actually tell the difference between the longer battery cover for Roger and the regular one when it's on.  It's back there behind my ear, not all that visible (and with your hair probably not at all, my hair's more like Daniel's).  I bet you'll adjust in no time.  I really don't miss the ear mold.

[Mary Beth]

The Roger 21 integrated receiver/battery cover only extends the standard Sonnet battery cover slightly.  It is a very small addition onto the bottom of the standard cover.

I agree with @Kara of Canada.  I don’t even notice the two Sonnets on my head anymore.

[Jewel]

@Mary Featherstonand @Kara of Canada

Do you tend to wear only the Roger integrated receiver/battery cover these days? 

[Mary Featherston]

@Jewel - no, I use the Roger pen but not all the time.  I have found that in normal meetings I don't need it.  I have used it for a couple of conference calls with my mobile phone.  But mostly I just use the rechargable batteries and standard battery cover.

[sassychele02]

@Mary FeatherstonFeatherston You looked cite in your gown!! That was awesome you got to use your own product during your surgery. I wish mine was as fashionable. Reading this post makes me realize I have no idea which  flex my surgeon implanted. Would it be weird to call and ask them?? All I know is that I will be getting the Sonnett and both Rondos at activation in a few more weeks. What a Roger Pen? 

[Mary Featherston]

@sassychele02 - aren't you seeing the surgeon for a post-op check before activation?  You could ask then.  The Roger pen is a device that connects to the Sonnet via an FM device that's part of the battery cover and can connect to your cell phone via Bluetooth.  Or you can link it to the CI and use it like a microphone, put it on the other end of the table in meetings.