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My Cochlear Implant - a journal
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.
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@mbower I do not have a CI but will share a resource that was given to me from a fellow Peer Mentor while we were in training. She used the site https://cochlearimplanthelp.com/ to do some research before she decided which company to use. At the time, and I hope that this is still the case, the site was unbiased. Most people do not research and rely on what the implant surgeons tell them. Research each of the company's websites and see if they had meetings in your area. I would hope you could join a Zoom meeting for each of the manufacturers to meet others in a live discussion. In Michigan, one company seems to have dominance. Consider researching the opinions of people in other countries, too.
Tony in Michigan
I received my cochlear implant in 2019 after a 5 year decline from moderately severe hearing loss to deafness. Really both ears but I got one implant. Johns Hopkins is my provider and told me all 3 cochlear companies were excellent and my own research indicated the same. I chose Cochlear because it is compatible with Apple products which is what I use. The company has excellent service and have been very responsive to my inquiries. Their audiologist and follow up also great. I bought a tv streamer and works beautifully especially for news. Clear. I can hear! I recently bought a mini mic and have not become adept at it. One problem is that this device works on one or other, iPhone or IPad and difficult to switch between.. I would like the mini mic to work in social settings but also on my IPad for zoom but switching device sometimes doesn’t work at all. So I’m not using. Shame on me. I have been meaning to discuss with Cochlear but haven’t.....and not seeing my audiologist during pandemic. Background noise is still a problem, or high ceilings or a breeze outside, mask is impossible, for me to hear, but all in all implant is a miracle. I would also like to recommend the film Sound of Metal, if you haven’t seen it. It is about a musician, drummer, former addict , who loses his hearing suddenly and thus his career, and ultimately gets 2 cochlear implants. It is an excellent depiction of what it’s like to lose hearing “not hear at all” and then to hear again with a CI. My husband, who has been my mainstay throughout, was enthralled at how diminished sound and then no sound was depicted and how he could relate to that. It also touches on the controversy of to hear or not....deaf community doesn’t believe it needs to be “fixed” as you are aware. I grew up with both paternal grandparents being deaf. One congenital, the other not. I believe there must be some inherited deafness on my part, besides aging, and my father was deaf earlier than I. I grew up with sign language but had no desire to relearn altho one of my children took classes in the depths of despair with my deafness. Long story for recommending cochlear implant if you are able to get one. Since I was of age and “overqualified” for deafness Medicare paid for all.
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1 ReactionThank you for sharing your story. Most people with adult onset hearing loss want very much to remain in the hearing mainstream. Cochlear implants make that possible. How fortunate we are to be living in times when this is an option.
Response to Julie: As I've learned more and more about hearing loss in "mature" women, I've encountered more and more who have benefitted from hormone replacement therapy (HRT). Because it is a quick, inexpensive, and reversible option, it is at least something for mature women to consider: if they don't see an improvement in less than a month, it should be abandoned. However, if HRT reverses or greatly reduces the hearing loss, it is a much faster, easier solution than a CI. That's not meant to say that CIs aren't great for those who have no other options. Also, if the person needs HRT, the CI will not work as well as it could...that need for HRT just will not go away. In most cases, there's also some imbalance, but it's easy to overlook that when there's severe hearing loss. Even I, who have decades of daily VRT in order to know which end is supposed to be up, overlooked the imbalance...even though I took a couple of serious falls. It wasn't until I had to spend hours every day lying flat, eyes closed, with V&V that I woke up and realized that this was my body yelling for HRT. I was flabbergasted that I regained the level of hearing in my right ear that I'd had prior to going bilateral. It also made me realize that, had I not spent four miserable years nearly 40 years ago searching for a safe form of HRT for someone in their mid 40s, I might not have permanently lost all useful hearing/balance in my right ear. This is not necessarily a long shot for a "mature" woman and should be explored when there's sudden hearing loss. Like some of the things (like steroid shots) that can be tried for sudden hearing loss, it may or may not work, but is worth considering. If it works and hearing returns, it's like a miracle.
If I was stupid enough to ignore that possibility for nearly a year with my background, I can only imagine how many women know virtually nothing about the connection between low hormone levels and hearing loss.
Hi Tony, thanks for that information. I have been doing research on all of the companies as well as talking to reps for each of them but it is difficult to find information that is unbiased.
It seems that everyone is happy with the choice of CI that they made which makes me feel better about having a success story regardless of which one I end up choosing. I have not attended a chapter meeting as the decision to get a CI is a very recent one (within the last month or two) but will definitely look into what options they are offering during the pandemic. Thank you for your information!
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1 Reaction@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?
I live in San Diego, CA and am receiving my care through Scripps Clinic Torrey Pines
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1 ReactionWow, 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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1 ReactionMBower, 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.