My Cochlear Implant - a journal

Choosing the right Cochlear Implant

<p>Hi everyone, I recently experienced sudden hearing loss to my right ear back in February. After no improvement with oral steroids and steroid injections it was determined that a cochlear implant is my best option. Now I am trying to decide which CI is best for me, between the Advanced Bionics, Med-El and Cochlear brands. My question for you all is how were/are your experiences with any of these brands and what made you decide on getting one brand over the other. Thanks!</p>

@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.

Thank 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.

@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

Through HLAA involvement I have met people with all three brands of cochlear implants. I'm convinced that all of the products are excellent. I only know the service provided by the CI I have, which is Cochlear Corporation. They are very helpful in navigating the insurance issue, and are very helpful when it comes to servicing their products, according to people who have needed to replace batteries, cords, magnets, etc., or have repairs, which are not common. In the 15 years since I received my CI, I've never had a problem that needed fixing. I upgraded from the Freedom to the N6 after using the Freedom for 9 years. I've been especially pleased with the innovations that Cochlear Corp. has developed for their products. The add on tech has been great. I love the hand held mini mic in noisy social settings. Now, with the N7 model, the processors stream directly with cell phones. My friends who have the other brands all say they like what they have. Prior to getting my CI, I had the advantage of watching many people go through the process of selecting a brand. I made my choice based on watching how well they did, and have no regrets. Have you ever attended an HLAA convention or chapter meeting? It does help to meet people who have CIs. Unfortunately, COVID is making that difficult.

@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?

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!

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.