Connect
← Return to Sudden Hearing Loss: What are options if steroids don't work?
Discussion
Sudden Hearing Loss: What are options if steroids don't work?
Hearing Loss | Last Active: Apr 12 12:14pm | Replies (72)Comment receiving replies
In April of 2008 I lost all hearing during the night, both ears. I went to sleeps a hearing person and woke up at 11:30 that night and felt something had happened. I put an iPod to my ears and couldn’t hear anything. I was not sick, I did not have a stroke. In the morning my husband and I went to an otologist who confirmed that indeed, I was deaf. He called it, Sudden and Complete Hearing Loss. Imagine my shock.
It took five months of fighting with our insurance company to finally get approval for bilateral cochlear implant surgery.
In September I had surgery on the right ear. It worked immediately. Three months later, the left. Didn’t work, 15 years later, still doesn’t work. With the implant I hear, at best 37%. Not great but that’s the reality of it.
I also have tinnitus in the left ear that is incredibly loud. I hear music in my head when I don’t have the processor on. When I do, I prefer to not initiate conversations because I may not be able to understand what the other person or people are saying. I get tired of apologizing that I can’t hear but that’s not true-I can’t make out what they are saying.
I know some sign language but that only helps me communicate if other people know it too.
Being deaf is very isolating.
Replies to "In April of 2008 I lost all hearing during the night, both ears. I went to..."
My implant shifted somehow inside the ear canal after my surgery causing the Cochlear implant to work improperly. I did not know that this was possible but I wasn’t getting the results I expected from the implant so they checked the ear canal part. Perhaps you have already tried this but if not it could be the cause of the problem.
Connect
You say the first CI surgery worked 'immediately.' Does it still work, or is that functioning at only 37%? With appropriate rehabilitation after the CI surgery most people do better than that.
Do you use assistive technology with the CI processor? Cochlear's mini mic 2+ works very well for most people. I use mine a lot in social situations in background noise. The Roger Pen is also helpful. Some of the add on tech is brand specific to the brand of CI a person has.
Hearing loss is very isolating. You are right about sign language. Unless those you live with and associate with use it, it's not much help. It can be a wonderful option for those who become a part of the Deaf Community.
My help for isolation has come from meeting other people like myself; those whose hearing loss came in adulthood. If there is a chapter of HLAA or ALDA in your area, you will benefit from getting involved. HLAA is The Hearing Loss Association of America. HLAA is a consumer based organization that brings people together to talk about their experiences, to learn about technology and to advocate for research & development in technology and medicine. http://www.hearingloss.org
ALDA is The Association of Late Deafened Adults. ALDA has chapters that meet to discuss experiences. http://www.alda.org
Chapters of these organizations exist in many states. Both organizations promote the development of more chapters. The only reason they exist is because people start them.
Due to COVID, a lot of chapter meetings have been held by video conferencing. Zoom meetings have kept these organizations going. Still, there is nothing quite like meeting in person to realize that you are not alone.
HLAA is planning an in person national convention in New Orleans this coming summer. Their conventions are life changing.
There's so much to learn about living well with hearing loss. Have you connected with either of these organizations?