Scared

[Amb]

Dear members, I am new. I am not yet a CI carrier. Short story about myself, I am now 41 years old. When I was 2 years old, I got meningitis and became completely deaf in my left ear and slightly hard of hearing in my right ear. I managed just fine with my right worse ear, because I could hear enough even without a hearing aid. However, in the past 2 years my hearing has deteriorated rapidly, I hardly hear anything without a hearing aid. It is very confronting not to hear anything, it gives me a stuffy and frightening feeling, and serious gloom. I have no choice but to choose coor Ci. But unfortunately I'm not optimistic, because you can't hear 24/7, when you take a shower, sleep, or when it's raining outside, you have to take Ci off and that thought makes me gloomy. How do you deal with this?

excuse me for my poor english, its not my first language.

[Serena Metzler]

First let me tell you something I was born hard of hearing, now I have to Cochlear implant devices,at first I was very stared and afraid at the same time, now i am no longer that person and I learned to be me myself and I, I want you to know this feelings is  normal and I want to encourage you to get the cochlear implant devices because your world's will be open for new things and people, I hope this helps you 

Edited July 10, 2023 by Serena Metzler
I am few mistakes

[Mary Beth]

@Amb

I wish you the best on your cochlear implant journey.  This technology is life changing.

We can keep them on in the rain.  If it is raining hard, we just use an umbrella or a raincoat hood.  They have a certain level of water resistance and if we want to swim with them, they have waterwear covers which keep them safe underwater.

Have you had a chance to meet other CI users near you?  That may help a lot on your journey.

[Serena Metzler]

Yes I agree 👍👍👍💯💯💯💯💯 💯💯💯

[Amb]

32 minutes ago, Mary Beth said:

@Amb

I wish you the best on your cochlear implant journey.  This technology is life changing.

We can keep them on in the rain.  If it is raining hard, we just use an umbrella or a raincoat hood.  They have a certain level of water resistance and if we want to swim with them, they have waterwear covers which keep them safe underwater.

Have you had a chance to meet other CI users near you?  That may help a lot on your journey.

Hi Mary Beth, i am not on this journey yet. I have an appointment soon with the audy, after this, they will decide if i qualify for Ci. I haven’t met any users yet, but my main frustration remains, u wont be able to hear 24/7, and this really made me sad. Thats why i was begging Med El from austria to let me part of this new clinicial trial where they are now implanting full under the skin device. 

[Mary Beth]

@Amb

Although it is highly recommended that we remove the processors at night when we sleep to give the skin and tissue that is between the exterior and interior magnets a break so it stays healthy and intact, there are people who do sleep with their processors on for various reasons.

For me, it is important to give that skin and tissue a break so I remove my processors at night.  There are various alerting devices we can use to be notified of sounds overnight.

[Tim]

@Amb I am single-sided deaf so not in the same position as you are but I just wanted to chime for encouragement.  I had my CI surgery & activation in January. One of the most compelling factors for me in getting the CI was to avoid a situation of losing hearing in my good ear.

As I'm writing this email, I'm listening to music streamed straight to the cochlear implant for both rehabilitation and enjoyment.  It isn't perfect and it doesn't match my good ear but I know that it has improved my quality of life/work. Also, if I suddenly lost my good ear, I would be able to cope.

Everyone's hearing journey is different.  Some have quicker positive outcomes than me, some have slower progress. All in all, I'm glad that I had it done.  I'm in my 50s and plan to use it for many decades.

Hearpeers is a very supportive community and feel free to ask questions - we've all been in a similar stage.   I've benefited from the patience and help from @Mary Beth and so many others - I'm happy to try to return the favor for people coming after me.

Good luck.

Tim

 

[Anthony Canada]

7 hours ago, Amb said:

Dear members, I am new. I am not yet a CI carrier. Short story about myself, I am now 41 years old. When I was 2 years old, I got meningitis and became completely deaf in my left ear and slightly hard of hearing in my right ear. I managed just fine with my right worse ear, because I could hear enough even without a hearing aid. However, in the past 2 years my hearing has deteriorated rapidly, I hardly hear anything without a hearing aid. It is very confronting not to hear anything, it gives me a stuffy and frightening feeling, and serious gloom. I have no choice but to choose coor Ci. But unfortunately I'm not optimistic, because you can't hear 24/7, when you take a shower, sleep, or when it's raining outside, you have to take Ci off and that thought makes me gloomy. How do you deal with this?

excuse me for my poor english, its not my first language.

Hi @Amb I'm new to being a CI user but I've worn hearing aids my entire adult life. At night or in watery environments I have always had to remove my hearing aids making it where I can not hear. I use assistive devices like my smartwatch to help alert me to things when I can't here. I know it is hard to not be able to hear 24/7 but I am grateful that modern technology allows me to hear for most of the day. When you talk to your doctor you might want to ask them about the Rondo3 and its water resistance. Hopefully it will allow you to hear during rain storms. 

[Heather W]

Welcome @Amb, you will find this to be a supportive and welcoming group. I wanted to share my experience so maybe you do not feel so alone. I started losing my hearing in my 30’s. Wore hearing aid in both ears for 8 years as hearing loss continued to get worse. During those 8 years, I cared for my husband who was battling a very rare and debilitating health condition. I lost my husband 2 years ago. I was now facing being extremely hard of hearing and well on my way to total hearing loss as a widow in her late 40’s. I live alone. I have to work to support myself. I too was so very scared. I got my CI one year ago and it has helped me so much!! I have made some changes in my home, given that I can barely hear without my devices, such as a strobe light smoke detector in my bedroom, vibrating alarm. I use my vibrating Apple Watch for an alarm when I travel. Having a CI has been a life changing option for me to stay engaged in life. It’s a major adjustment, yes. It’s a loss to go from hearing “naturally” to needing devices, but it is an obstacle that can be managed. Give yourself a little bit of grace, lean on friends and family for support, ask questions of this group and read through the stories of others who have thrived with their CI despite having hearing loss. Hang in there. 

Heather W