My Cochlear Implant - a journal

Posted by lizzy102 @lizzy102, Dec 9, 2019

I’ve been loosing my hearing for around 25 years. It started after my first kidney transplant – or that’s when it got bad enough to go see an audiologist to see why I was saying “What?” “Pardon?” “Could you restate that?” I would get home from work seeing clients and would be utterly exhausted, for no apparent reason. The audiologist I met with, Dr. Robert Sweetlow, advised a hearing aid for my right ear. I can’t even tell you how many aids I’ve had since then – about enough to buy a nice new car I’d guess, since they run about $2000 each.

I work and play for an RV Caravan tour company, we are wagon masters and tail gunners depending on the trip. We usually travel with 16 to 25 RVs and go all over North America, Europe, Africa and Australia. It’s super fun! And it is super stressful for me with my hearing loss. I’m with groups of people in all kinds of challenging hearing/understanding situations. As a retired psychotherapist, you have to know that I love connecting with people and being in the middle of things. Challenging? Oh my, yes.

In 2015 my discrimination was at R-46, L-32. In 2017, Resound 3D Linx hearing aides offered a lot of help to my declining understanding. So, I struggled along for those years. Then this year (2019), after a particularly challenging caravan, I decided to make an appointment for another hearing test and adjustment. In Albuquerque, NM I met with Dr. Terry Sankovitz. I just wasn’t understanding people and was cranky and exhausted all the time. After the exam, Dr. Terry showed me the audio gram… R- 14, L-12. Whaaat? Seeing it on paper my whole insides went cold and still, I was stunned. Barb, my best friend and wife, was just as shocked when Dr. Terry shared the test with her. The test measured how my ears understood speech without any visual cues. Dr. Terry said that there is no point adjusting my hearing aids further, louder wasn’t working. She talked about my options, one of which is cochlear implant. I had to let that sink in…

With a cochlear implant, there is no going back. You’re implanted period. But wait… with my ‘discrim’ I couldn’t go back anyway. The other option would be to withdraw from the world. Understanding .4 in one ear and .1 in the other is deaf. I am highly functional because I speech read; read bodies, context and situations – in the right situation I do okay. In groups, in noise, in a car, in low light… well you know.

It just happened that Cochlear Americas was hosting a panel discussion the next day, for people interested in CI (cochlear implant) and for those with CIs. Did we jump on that opportunity!!! WOW. What an eye opening. The group moderator was a woman who had been deafened as a child and as an adult had chosen bilateral cochlear implants. She was dynamic and compassionate. Her mother was a member of the panel discussion that included a couple, sisters and a single person. Here’s the best part. They hired a court XXX to transcribe speech to captions on a screen for all to see. I am not sure anyone in the room needed them as badly as did I. When I walked in the door, I felt afraid and when I left I felt elated. Arms full of booklets and information, Barb and I talked about the meeting and agreed that both of us felt a sense of hope, at last.

@mbower You are welcome. You may want to check the HLAA website to see some of the webinars that are available there. It's unfortunate that COVID19 is preventing regular meetings, but is a reality. May I ask what state you live in?

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@julieo4

@mbower You are welcome. You may want to check the HLAA website to see some of the webinars that are available there. It's unfortunate that COVID19 is preventing regular meetings, but is a reality. May I ask what state you live in?

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I live in San Diego, CA and am receiving my care through Scripps Clinic Torrey Pines

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@joyces

In response to mbower, about a very recent hearing loss and getting a CI:
I've had Meniere's for most of my life, was unilateral (one side only affected) until May 24, 2019 at 6:45 p.m. At that moment, Nancy Pelosi quit speaking in mid-sentence. The deafness descended that quickly. I had gone bilateral, and my "good" ear that had age-related hearing loss (I'm 78) was as useless as my bad ear had been for nearly 40 years. I could hear a little, but was unable to understand anything via phone or conversations unless I knew a lot about the subject and was totally alert, able to guess correctly for all the missing words. By Jan. of 2020, I was at the hearing center two hours away that does CIs. Because no one (not the audis or the surgeon) had had any experience with a CI for someone with Meniere's, I didn't decide on a CI. By that time, I was also having problems with balance, and V&V (vertigo and vomiting) became part of every day for hours. That's no way to live, so I finally found a local doc willing to prescribe hormones in large doses. Two weeks into HRT, not only had the V&V gone away, but my hearing returned to the level where it had been before I had gone bilateral. Big laugh, as I had thought that I was badly impaired at that level, but it was thrilling to have that amount of hearing back!

Now, there's only been one study of women with Meniere's who've tried hormone replacement therapy (HRT), a small one done in China. However, after moderating a Meniere's Discussion Group for decades, I can report that it's pretty common for women in their 40s or older to lose hearing and/or balance due to low hormone levels. If you're in that age bracket, you might think about trying to find a doc who will prescribe large doses of HRT–if it works, it will be pretty quickly. There are lots of horror stories about cancer, mostly due to the fact that for a couple of decades docs prescribed estrogen with either no progesterone or very little. We now know that the correct balance, which is 2.5mg progesterone for 1mg estrogen, does not seem to increase cancer risk; I've taken higher doses in the past and last May, even at my age. Further, if HRT does help hearing (and probably balance in the bargain), it can be tapered down to a much, much lower amount once hearing is better. For example, I took 5mg progesterone and 2mg estrogen every day for a month, then half that amount every third day, then every second day, then every day, tapering down gradually. I can tell when I've tapered too quickly if the tinnitus increases. So, over seven months I've cut the daily dosage in half and will try cutting that in half again, first every other day for at least a couple of months.

If you also have any imbalance or are now fearful of heights (more than normal) or of falling, HRT is really worth a try. I can add that I only began to have real problems with hearing/balance when I quit taking birth control pills in my early 40s. Prior to that, I had a couple of classic Meniere's crises when I had stopped taking birth control pills for some reason (to get pregnant in my 20s, because I was getting older in my late 30s). As soon as my hearing was far better and the V&V had stopped, I went to the big Vestibular Clinic two hours away in Portland, Oregon to learn the latest in vestibular rehab. in order to add new stuff to what I've done every day for nearly 40 years. As a result, I can hear (well, not everything, but enough to get by with an aid in my good ear) and do really active things like instream surveys for fish & game. A good VRT specialist will do an evaluation to determine what doesn't work as it should. I was surprised to learn that, although I've worked on proprioception (the information your feet give you) for decades, I've lost lots of feeling in my lower legs, so have to work harder on paying attention to what my stupid feet have to tell me! Basically, once again I can move around with confidence, even wade difficult rivers without fear. Well, okay, there's always fear when crossing a river with big boulders and fast current, but that's fear that make good sense!

I am extremely glad that I did not opt for a CI but did the work to regain my previous level of hearing. For a couple of months, I bored everyone around me by saying, "Did you hear that?" Shoot…of course they did, as all norms would! The first time I heard a bird sing was a real thrill. I'm still happy that I can hear appliances or the car engine running! While I was deaf, I'd turn on the water to fill a pot, cross the kitchen to do something, and, because I couldn't hear the water running, would be totally surprised to turn around and see that the pot had overflowed! Sheesh! I don't need to feel the dishwasher or washer to see if they're running…doesn't seem like much, but is a really big deal. It's great to be back in the world again!

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Wow, thank you for sharing your story with me. May I ask how soon after you lost your hearing did you start the HRT? I lost my hearing earlier this year when I was 27 so it was not believed that this therapy would have worked for me (though this and many other therapies were discussed but decided against). I tried oral steroids and steroidal injections which did not help. Because I was ill the week prior to the onset of my hearing loss, it is believed that the deafness was caused by a virus, and an autoimmune component was ruled out. I am lucky to have a very good ENT and audiologist working with me and am lucky to have the many options I have but also feel a little overwhelmed because the science and technology aspect of a CI are like a foreign language to me so it is nice to have this forum to discuss with people who arent just trying to push their product on me.

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@mbower

Wow, thank you for sharing your story with me. May I ask how soon after you lost your hearing did you start the HRT? I lost my hearing earlier this year when I was 27 so it was not believed that this therapy would have worked for me (though this and many other therapies were discussed but decided against). I tried oral steroids and steroidal injections which did not help. Because I was ill the week prior to the onset of my hearing loss, it is believed that the deafness was caused by a virus, and an autoimmune component was ruled out. I am lucky to have a very good ENT and audiologist working with me and am lucky to have the many options I have but also feel a little overwhelmed because the science and technology aspect of a CI are like a foreign language to me so it is nice to have this forum to discuss with people who arent just trying to push their product on me.

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MBower, your tender young age doesn't necessarily rule out low hormone levels, FWIW. I was treated for pernicious anemia during my teens; the family doc didn't believe in "women's troubles," so ignored the other signs like truly excessive bleeding where I wore two super pads and still couldn't get through a 50-minute class without having blood run down my legs on the way to the nearest rest room. Periods also lasted three weeks. As soon as I was 18, I went to an OB/Gyn, who immediately put me on birth control pills, although he didn't say that's what they were because, gasp (in 1960), they were only for married women. Again, I had two episodes of hearing/balance issues during my 20s (trying to get pregnant) and 30s (was divorced so didn't "need" birth control pills–nice statement, that). The hearing/balance problems disappeared as soon as I got back on pills. It was only after I went off in my 40s that I lost hearing/balance in my right ear; because it took four years of misery before we found a suitable form of HRT, I lost both hearing and balance permanently in that ear. So, I was really surprised to regain some hearing in my "good" left ear when I started heavy doses of HRT after 11 mos. of being nearly totally deaf. I had already begun to wear an aid in that ear due to age-related deafness. My father was profoundly deaf, wore early hearing aids, which were worn in a harness over his chest in the late 40s, 50s. I remember how excited he was to get one of the first hearing aids that were part of the big clunky bows of his glasses! He died before aids were small, somewhere near the ear; earlier ones had a receiver, sometimes that was carried in a pocket, with a wire going to the earpiece.

I only mentioned the hormone connection because it is present for a surprisingly large group of women, and not just "mature" women. My family has a history of women having excessive bleeding; my ggrandmother died of a hemorrhage. In addition, I had a ruptured appendix at age 8, which means that I only have one ovary, and it is damaged. For me, it's a combo of bad genes and bad luck. <g> I view abnormally low hormone levels as being like my diabetic husband's inability to make insulin: the stuff you take isn't as good as what your body should make, but it's far better than nothing. I have two children…but I also had six miscarriages, perhaps because my body didn't produce enough hormones to sustain pregnancies.

Do you have any balance issues, even slight ones? Are you uneasy going down stairs? Do heights bother you? Are you clumsy? Do you have to concentrate to know where your fingers are? One of the signs of imbalance is reaching for something on your desk by spreading your fingers out so that at least one of them will bump into the pen or pencil. Another sign is walking with your feet apart, looking at the surface ahead of you instead of at the world out there. If you do, that is more likely to point toward low hormone levels.

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@mbower

I live in San Diego, CA and am receiving my care through Scripps Clinic Torrey Pines

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The 2021 National HLAA Convention is going to be in San Diego if it's held. The conventions are always outstanding. All the CI manufacturers attend and give presentations and have exhibits. A great learning experience. There are several HLAA chapters in southern CA. I've attended a couple Zoom meetings they have opened up to everyone. I live in Wisconsin so it's kind of fun to attend other chapter's meetings. Check it out.

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@joyces

MBower, your tender young age doesn't necessarily rule out low hormone levels, FWIW. I was treated for pernicious anemia during my teens; the family doc didn't believe in "women's troubles," so ignored the other signs like truly excessive bleeding where I wore two super pads and still couldn't get through a 50-minute class without having blood run down my legs on the way to the nearest rest room. Periods also lasted three weeks. As soon as I was 18, I went to an OB/Gyn, who immediately put me on birth control pills, although he didn't say that's what they were because, gasp (in 1960), they were only for married women. Again, I had two episodes of hearing/balance issues during my 20s (trying to get pregnant) and 30s (was divorced so didn't "need" birth control pills–nice statement, that). The hearing/balance problems disappeared as soon as I got back on pills. It was only after I went off in my 40s that I lost hearing/balance in my right ear; because it took four years of misery before we found a suitable form of HRT, I lost both hearing and balance permanently in that ear. So, I was really surprised to regain some hearing in my "good" left ear when I started heavy doses of HRT after 11 mos. of being nearly totally deaf. I had already begun to wear an aid in that ear due to age-related deafness. My father was profoundly deaf, wore early hearing aids, which were worn in a harness over his chest in the late 40s, 50s. I remember how excited he was to get one of the first hearing aids that were part of the big clunky bows of his glasses! He died before aids were small, somewhere near the ear; earlier ones had a receiver, sometimes that was carried in a pocket, with a wire going to the earpiece.

I only mentioned the hormone connection because it is present for a surprisingly large group of women, and not just "mature" women. My family has a history of women having excessive bleeding; my ggrandmother died of a hemorrhage. In addition, I had a ruptured appendix at age 8, which means that I only have one ovary, and it is damaged. For me, it's a combo of bad genes and bad luck. <g> I view abnormally low hormone levels as being like my diabetic husband's inability to make insulin: the stuff you take isn't as good as what your body should make, but it's far better than nothing. I have two children…but I also had six miscarriages, perhaps because my body didn't produce enough hormones to sustain pregnancies.

Do you have any balance issues, even slight ones? Are you uneasy going down stairs? Do heights bother you? Are you clumsy? Do you have to concentrate to know where your fingers are? One of the signs of imbalance is reaching for something on your desk by spreading your fingers out so that at least one of them will bump into the pen or pencil. Another sign is walking with your feet apart, looking at the surface ahead of you instead of at the world out there. If you do, that is more likely to point toward low hormone levels.

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I woke up the day I became deaf with extreme vertigo and nystagmus. I could not get out of bed, or even roll over in bed, without vomiting. The extreme vertigo lasted for about 4 days but I felt "off" and "uneasy" for about a week (mostly because I was on a sailboat race down to Mexico for 8 days). But I have never had any vertigo or balance issues prior to this or sense then, for which I am incredibly thankful of.

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@lizzy102

Having a cochlear implant is a big, momentous, scary, exhilarating, and exhausting experience. Six months in, my life transformed. I’m bird watching and can identify the White-Eyed Vireo, Summer Tanager, Cardinal, Titmouse, Red-eyed Vireo and more by sound alone. We sit 10’ from friends and have lunch and I understand what they’re saying. I can discern a vehicle coming down the hill vs. going up the hill. I understand my grandchildren on FaceTime and the whole family on Zoom. My taste buds have almost returned to normal. Somehow with all of those wonders, I feel a little like an pause or end is coming for this Journal. I wish I could post huge exciting changes every day, there aren’t any. Having a CI is a wonder, a miracle for me, period. I am so lucky.

We are still living in our RV here in the same state park, waiting – like so many others – for a vaccine or the virus to hit critical mass and disappear. I dislike uncertainty and the virus has offered a huge challenge for my meditation practice to managing the uncertainty and my impatience to get on with life. Thank goodness for the 8-week course we started during the early Covid time! I would likely be all kinds of crazy without it. There are good things about being in one place and forced to slow down. I hope each and all of you survive and thrive beyond Covid-10.

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@lizzy102 Thank you for all your posts about your continuing experiences with your CI. I've loved reading them AND loved hearing about RV options for women. You're a terrific writer. I'm not considering getting a CI; but reading about your experiences over time was valuable for me and would be even more so for people considering this amazing technology. Thanks to all of the information I've found from reading posts on these threads, I'm a reformed luddite and will be exploring all the new technologies Julie, golden? and others have written about that will help me hear better when it's safe to venture out. Thanks again.Nancy

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Time for an update. My Cochlear Journey continues in a positive vein, still love it! One of the difficulties I’ve found is the very size of the processor. It takes up a lot of ear geography, especially considering double masks pulling my ears into oddly shaped flaps. Yes, I double mask, it’s time for that what with the variants. I even bought glasses frames with thinner temples, to give more room to my processor. Nope, there’s not much space left, the processor is the most precarious though. I have it on a tether, a piece of fish line on the processor tied to a weave clip I put in my hair, so it doesn’t dive to the ground. One solution I came up with is to wear a hat and tuck the processor above the band, a head band works well too. We have a couple feet of snow on the ground now – warm hats. Another issue was music – it all sounded the same. My Cochlear Audiology team at UAB worked with me in virtual training sessions – it was super fun and really helped me discern a piano from a cello from a guitar. And the app “Bring Back the Beat” from cochlear is terrific, lots of listening games that really help drive home individual instruments. Be safe out there, my imaginary friends. See ya next time.

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@julieo4

The time frame for HLAA Chapter meetings has a lot to do with the make up of the chapter. If the chapter is all older retired folks, they will choose to meet in the daytime. It's hard to involve working folks if the meetings are held then. Some chapters meet on Saturday morning. That's kind of a compromise, but lots of people want to be free on their weekends. 🙂 It's pretty much up to the founding committee when a chapter starts to decide which way to go. A chapter can be formed with a small number of people, but a goal should be to grow. Chapters are more than basic support groups. There are a few chapters that hold both evening and daytime meetings. Our chapter in Appleton Wisconsin meets in the evening. Attendance varies between 20 – 50 depending on the program to be presented or the social event we have twice a year. The chapter also has 2 subgroups; one that focuses on cochlear implants and the other that is basically an entry level support group where people can ask questions and share their experiences. That group meets in the afternoon. No one answer. Depends on how you start and how you grow. Regardless, it's well worth getting involved in chapter development if you want to learn how to live well with hearing loss. We learn more from one another than from the professionals in the field. Not a slam against them, but the reality is they are focused on a small piece of what we need and don't have time to answer questions they don't have answers to. We know what coping means. We know what being left out means. We know what helps and what doesn't. And, we have experienced similar situations that people who don't have hearing loss have difficulty understanding. That's what peer support/self help is about. Let HLAA know if you are interested in forming a chapter. There are people out there who are willing to help. They may not live in your geographical area, but they can sure communicate with you online. Who knows, there may be some national HLAA members in your area. They are everywhere. Be one!

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@julieo4 I have a question and am not sure where to raise it and how but I know starting with you even if this post of yours was about a year ago, couldn't be too bad! Although I was involved with music most of my life, when my hearing went down, gradually, I ultimately stopped listening because I couldn't tolerate the distortions of the music I was hearing – with my hearing aid. (One ear became deaf.) Now I can hear much better with my C.I. and I want to restore music to my life – which means getting myself a radio! My question: with a cochlear implant, does it make sense to use an earbud? Anything else to learn re equipment to help listen to music?

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@barbb

@julieo4 I have a question and am not sure where to raise it and how but I know starting with you even if this post of yours was about a year ago, couldn't be too bad! Although I was involved with music most of my life, when my hearing went down, gradually, I ultimately stopped listening because I couldn't tolerate the distortions of the music I was hearing – with my hearing aid. (One ear became deaf.) Now I can hear much better with my C.I. and I want to restore music to my life – which means getting myself a radio! My question: with a cochlear implant, does it make sense to use an earbud? Anything else to learn re equipment to help listen to music?

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I was playing in an orchestra and ensembles when I lost hearing in my right ear over 30 years ago. I had to stop participating, both because I couldn't hear what others were playing and because recruitment made some sounds physically painful. I stopped going to concerts or listening to music at home. After about 30 years, I started listening to music again and learned that I'm only comfortable hearing music I know relatively well: I am able to imagine the sounds I can't hear to fill the spaces. It's still uncomfortable to listen to music I don't know, as lots of instruments are simply missing, and I'm unable to imagine what I should be hearing. Now, I can go to a concert of "old" music and enjoy it, thinking I'm hearing what's missing. I still don't listen to music nearly as much as I used to at home; recordings are more difficult to hear than live concerts. It's that loss that happens with electronic sound: radio, TV, phone, etc. where some tone ranges just are lost–which is why it's harder to understand the same person via phone than it is in the same room, albeit being in the same room means that you have all those wonderful visual clues. I am pleased that I can enjoy some music now.

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@barbb

@julieo4 I have a question and am not sure where to raise it and how but I know starting with you even if this post of yours was about a year ago, couldn't be too bad! Although I was involved with music most of my life, when my hearing went down, gradually, I ultimately stopped listening because I couldn't tolerate the distortions of the music I was hearing – with my hearing aid. (One ear became deaf.) Now I can hear much better with my C.I. and I want to restore music to my life – which means getting myself a radio! My question: with a cochlear implant, does it make sense to use an earbud? Anything else to learn re equipment to help listen to music?

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You have a CI and also use a hearing aid, right? If so, you are bimodal just as I am. I enjoy listening to music especially when driving alone so I can manage the volume and the sound. A little more bass works well for me. The music I enjoy most is the music I've known for a long time; that which is familiar to me. (Also that which has words that make sense.) At home if I want to listen to music I plug a neckloop into the portable device it's playing on and use the telecoils in my HA and in my CI processor. It works great.

I will say that when music is playing in the background, anywhere, it makes it difficult to carry on a conversation. Yes, I can enjoy the music that way as long as there is no conversation. My hearing loss has been a part of my life and spousal relationship for so long that we've adjusted to NOT having music on at home very often. The TV is another thing. 🙂 As long as I can reach and capture the remote control, I can turn it to mute when conversation starts. I have granddaughters who are vocalists. No matter what they sing I enjoy it!

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