Losing hearing because of brain tumor

@bigmqama
Good afternoon,
do you know what percentage of your hearing you have lost or how quickly over the years you have been losing it or has anybody been tracking that? Do you know what percentage hearing you have remaining in your your right ear versus your left? What’s your doctors opinion of totally losing your hearing?
I am assuming hearing aids aren’t an option.
Jake

Hello @bigmqama and welcome to Mayo Connect

I'm sorry to hear of your concerns about total deafness, that must be frightening for you. Have you discussed this possibility with your doctor? If not, please do so.

Like @jakedduck1 posted, it is important to know much of your hearing has been lost and over how long of a time period. Do you have copies of your previous hearing tests done by an audiologist?

I would encourage you to talk with an ENT specialist or perhaps a neurologist. Will you do that?

Hi @bigmqama, welcome to Mayo Clinic Connect. You'll notice that I moved your question to the Brain Tumor group and the Hearing Loss group. Here you will meet several members who are living with gradual and some with sudden hearing loss, like @kayjaylauren @joangela @imallears @mikepa @nurseheadakes @maryjax and others, who can help you understand what you can expect and how to prepare for hearing loss.

I agree with @jakedduck1 and @hopeful33250 that you should talk about your hearing loss with a specialist. Have you been to an audiologist?

@bigmqama I agree you should see a specialist, but would want to know additional info. Were you told what type of tumor it was, maybe an acoustic neuroma (AN)? My wife woke up deaf in one ear 3 years ago and was diagnosed with an AN, but she acted quickly and steroids helped it relieve pressure on her hearing nerve and her hearing came back. Her AN tumor was small and the specialist told her they grow slowly. But we have to watch it to make sure it doesn't start pressing on the hearing nerve again or the brain stem. She went to an otolaryngologist at Jefferson in Philly. I would think you would need a current MRI if you haven't had one in awhile.

There are several unknowns in your story. Needless to say, hearing loss is challenging to deal with. I'm happy for you that the tumor you experienced years ago was taken care of. I wonder why you do not qualify for a cochlear implant? I was told decades ago that hearing aids would not help me. I trusted that advice and didn't seek help. A decade later when I was desperate about the progressive bilateral hearing loss that was consuming my life, I had further testing done and was encouraged to try hearing aids. I did, and they helped. Not perfect, but they helped. A couple more decades passed and the hearing aids were not doing what they had done, so I graduated to a cochlear implant. It has been miraculous, and works in tandem with the hearing aid I use in the other ear. Not perfect, but wow! Not sure where I'd be without my bionic ears! Like others, I encourage you to seek further help. Go to a reputable cochlear implant center for testing. You definitely want to do all you can, while you can. You may be surprised at your options.

@bigmqama
Hi,
Please heed the advice here and of @julieo4 . Don't worry about sign language at this point. You will need lessons and have to be around other people who sign in order to perfect and practice. So that's the last thing to worry about at this stage. And don't wait any longer to pursue the options.

FL Mary

Hi thanks for answering. The nerve damage that is cauaing the problem with my hearing is from the radiation that I had. Yes I spoke to my doctor but I will talk with him more because I need help and support that is why I am here. He doesn’t know what to do next.
I have some of my hearing tests I will find them. The test from last year was the worst. That was in Oct. and the doctor said that if it continues at that rate I can be deaf by this Oct. I have lost 45 percent hearing in my left ear and am consitered deaf in the riight. I wear 2 hearing aids a signia I have been losing hearing since I was about ten. Tumors were at ages 3 and 7. My hearing has gotten worse with age. My doctor is with the department of Otolaryngoloy a division of ontology and neurotoology at Mass eye and ear. I just saw a neroncologist who lust said that it will get worse.

I see an audiologist every year before I see the doctor. Is he who I should discuss this with and not the doctor?

I had an Astro ssytoma ans had a ct scan in March.

Everyone's situation is unique to them. Sometimes doctors tell patients that nothing can be done to help sensorineural hearing loss.That isn't always true. None of us on this discussion group are physicians or audiologists. We share some very different experiences. Those of us who have had cochlear implants had to have an MRI prior to becoming a candidate for surgery. While a CT scan will tell a lot, An MRI is more diagnostic. It seems that your auditory nerve has some degree of function or you would not be able to hear at all. It also sounds like your hearing is not the same in both ears. Before accepting a dire diagnosis on any health issue, it seems wise to seek a second opinion. Another question: Is your audiologist sharing any information about speech to text apps that might help you? There's a lot of amazing technologies available. We all deserve to be told about them. Far too many people who sell hearing aids don't share that information.