so far the only symptom I have is the hearing loss. right greater than left. the left ear is fine other than very high pitch tones, the right ear has a 30decible loss and is going to require a hearing aid. I was wondering how frequently do people with CM go completely deaf? If it is the nerve that is affected then a hearing aid wouldn't help or am I wrong? My biggest fear is going completely deaf. I know with this hearing loss I am not enjoying being in large crowds anymore. I can't make out conversations that are taking place on my deaf side.
I've been thinking and being blind removes things from ones life but being deaf removes people from ones life.
Thank you for any responses.
I've googled the topic and can't come up with a statistic.
It totally sucks. After the headaches, the hearing loss is my biggest complaint.
I have moderate to severe loss in both ears. I think it's amazing, how much I have compensated for the loss. It's a frustrating thing because unlike other disabilities, people automatically assume you are not paying attention, being rude or evasive (even people who KNOW you have hearing loss tend to forget lol)
I miss being able to go to a movie theater and enjoy the movie. It's funny because what I can hear is SO loud in the theater, but it doesn't make up for what I cannot hear at all. It's such a frustrating thing.
I feel your pain. I think the best thing about the internet is that I don't have to worry about reading lips lol.
Do you have hearing aids? If so do they help? Also did you hearing go overnight or is it gradually getting worse? I know CM causes tinnitus/hearing loss. Let me know if I'm correct but I think the tinnitus is caused by hearing loss or can you have tinnitus that causes the hearing loss b/c the ring is so loud. I have to go for a ABR hearing test today at 3. I guess that determines if the loss is in the nerve. Since I have CM and MS I know what mine will show -- even though all the neuros say MS does not cause hearing loss. The NS said the hearing loss might be genetic and have nothing to do with CM either. I guess it doesn't matter what caused it b/c if it is my only CM symptom I won't get surgery and if it is MS there is nothing you can do about it anyway but just get use to your "new normal".
Melissa, I don't have hearing aids because my insurance won't cover them and they are so expensive.
I lost my hearing gradually. Well, it actually wasn't over a long period of time but it wasn't like I noticed a huge change over night. My family noticed it more than I did, at first.
I do not think tinnitus causes hearing loss, I think it goes hand in hand with hearing loss. I had the ABR test before my surgery, I wish I would have kept a copy of the results. I should ask for them at the hospital.
Unfortunately, the only people I have heard of who got hearing back after the decompression surgery were those who lost their hearing pretty recently to the surgery. Seems like the longer you go, the more permanent the damage is. (in my non-scientific observations lol) I was warned that there was only a slim chance that I would regain it, even though my neurosurgeon and ear doctor both agree that the Chiari probably caused it.
Good luck with your ABR (although it's not like a test that needs luck lol)