Hearing Loss: Come introduce yourself and connect with others

You're doing a good job seeking information in advance. I strongly recommend you see if there is a chapter of The Hearing Loss Assn. of America (HLAA) in your region of New York state. There is a terrific chapter in Rochester, and another in NYC. I'm sure there are other chapters in other areas, but I know people from the two that I mentioned. Check out HLAA at: http://www.hearingloss.org You'll find a ton of info on the website.

Hi, my name is Nancy and I live in western NY. Started losing my hearing around 2000 from Meniere's disease and loud noise. Had an endolymphatic stent in 2006 which helped alleviate the severe vertigo associated with Meniere's. I've had sudden hearing loss twice in 2011 and got hearing aids then (Phonak). Switched to Otican in 2011 but with progressively worsening hearing, I'm getting a Cochlear brand implant on October 4th. I'm nervous about it but feel like I'm out of options for my right ear-- only 8% speech perception at last testing this year. Everyone I've talked to, mostly in my Rochester HLAA chapter, tell me that I will hear better with the CI. Does anyone else have Meniere's and CI?
Very few in my area. I'm interested in hearing about others' experiences.
I do feel very fortunate that we have such exceptional medical resources here and have had a good relationship with my ENT and audiologist for many years.
I would recommend our HLAA chapter to anyone with hearing loss. Our programs have been on Zoom since March of 2020 and we've had guest speakers from many areas of the country , one good thing to come out of the pandemic! We are an active chapter and do everything we can to connect and offer assistance to hard of hearing people. We have a Demo Center which is a place you can visit-- live or on Zoom-- to learn about assistive listening devices of all kinds.
We also have a monthly newsletter, September through June. Our website is https://www.hearinglossrochester.org

@julieo4 Thank you for this! The chapter nearest me is the Albany chapter so I sent them an email to ask about local audiologists and ENTs.

That's great! Chapters that are used to meeting in person have been deeply affected by COVID, but most have leaders who are doing all they can online. I hope you hear from them. 🙂

Thanks for sharing information about the Rochester HLAA Chapter Nancy. I've always felt that chapter is the 'sister chapter' to HLAA Fox Valley Chapter in Wisconsin. We're about the same age, and over the years I've met and enjoyed many people from your chapter. HLAA is definitely a positive for people who struggle with hearing loss. It helps so much to hear other people's stories that validate your own experiences; experiences that are difficult to explain to people who do not have hearing loss.

One of our board members has Meniere's and a CI. It has helped him a great deal. You are fortunate to be involved with your HLAA chapter as you've seen what a difference a CI can make. I watched HLAA friends get CIs 20 years ago and was astounded at the change in their lives. It encouraged me to go for it in 2005. So glad I did. You will be too. 🙂

Thanks for the reassurance, Julie. If you know anyone from the Rochester chapter, it probably is Sue Miller. She is the person who started our chapter in 1983 and has been the face of our group for many years. Her enthusiasm and compassion for others who have hearing loss is incredible.

I hope to hear from others with Meniere's about how they are coping with it, whether they have a CI or not.

I had sudden single side hearing lost 8 years ago. I current am using the Phonak bi cros. Most of my interactions are with people with accents from other countries. This is a constant battle of getting past their accents along with the normal challenges of using hearing aids . I live in Thailand and hope to be able to return to Arkansas for a visit next summer. It would be great to get feed back on other options. I am Looking into bone anchor devices, but can’t find anything saying there are an improvement over cros. I am 74 but active in a very hot and humid environment.

Hi Nancy, I add my welcome. You may also be interested in these related discussions:

Cochlear Implants
- How do you find and evaluate a good Cochlear Implant Surgeon? https://connect.mayoclinic.org/discussion/cochlear-implant-surgeon/
- My Cochlear Implant - a journal https://connect.mayoclinic.org/discussion/my-cochlear-implant-a-journal/
- If you're a candidate for a cochlear implant, what will you do? https://connect.mayoclinic.org/discussion/if-youre-a-candidate-for-a-cochlear-implant-what-will-you-do/
- Cochlear Implants https://connect.mayoclinic.org/discussion/cochlear-implants-2e44a5/

Meniere's
- Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/

Thanks, Colleen. I will look into those discussions. I have read 'My Cochlear Implant-- a Journal' and found it full of good information, different from what a doctor would tell you. I hope to keep a journal once the surgery is over so I can look back at it to see if I'm making any noticeable progress. Still hoping to hear from others with Meniere's.

@grovelander, I hope you'll add your journal notes to @lizzy102's thread. We're all richer when we hear multiple accounts.

To connect with other with Meniere's you'll want to meet @joyces @trishanna and others. Feel free to start a new discussion pertinent to your specific questions and concerns.