Sound Sensitivity and Tinnitus After Craniotomy for Epidermoid and Cochlear Fistula

Hello,

My name is Kelli, and I could use some help with suggestions for dealing with sound sensitivity at work. I work in customer service at an airport. In January, I had a craniotomy for a benign skull base tumor, a CSF leak into my temporal bone, and a cochlear fistula. While my ENT was able to preserve some hearing in my left ear, I can’t hear any speech with that ear, and I’m extremely sensitive to the sounds I do hear, especially loud ones.

I’ve also developed tinnitus in my left ear, which is more manageable in quiet environments, but it’s never fully gone. I took three months off work after surgery, but going back has been really difficult. It’s so loud, and I find it challenging to wear hearing protection because it makes it harder to hear customers.

If anyone has any advice, I would really appreciate it. My ENT has referred me to a tinnitus and hyperacusis center, but it’s in a different state, and I haven’t been able to go yet.

Thank you so much for listening. I truly appreciate it.

 

First of all, I sincerely wish you a speedy recovery. Hyperacusis’ biggest enemy is “loud” sounds. I am not an expert in this field, but based on both my own experiences and what I’ve learned in the community I’ve been a part of for months, you need to continue living within the sound level range that is suitable for you. Overusing earplugs unnecessarily can make your ears even more sensitive, and similarly, constantly exposing your ears to noise to avoid sensitivity may not be a good idea either.

One more clear rule in this matter is that you need to protect your ears when the sound level starts to exceed 80 dB because once an ear has been damaged, it becomes more sensitive and vulnerable to future damage.

This may sound too straightforward, but if you can, at least for a certain period, you might want to consider changing your job or working from home if possible. In a communication-focused job, you might struggle both due to hearing problems and hyperacusis.

Perhaps my advice isn’t very helpful, but as someone also dealing with this at a young age, I just wanted to offer my support. I hope things go well for you and that you return with good news. Take care of yourself. Best regards.

 

@2049v, thank you so much for responding. I hope you're doing well. Hyperacusis has been one of the most difficult adjustments in my life. I've had many surgeries following a car accident I was in at 19, where I almost lost my life. I'm 45 now, so I'm not exactly young anymore. Although I can't change my job, I'm hoping to make it more manageable, and I really appreciate your advice. It's comforting just to have someone who understands what it's like to live with hyperacusis.

For me, tinnitus is easier to deal with—it's not pleasant, but it's manageable. Hyperacusis, on the other hand, is different. Being around a lot of noise drains my energy, and what I consider unnecessary loudness, especially when it's repetitive, can even make me angry. However, to everyone else, it’s not unnecessary. I realize the issue is with me, but it’s still hard to cope with.

 

I'm sorry to hear about the accident you went through. It must have been a tough and terrifying experience. I hope there hasn't been any permanent damage.

Where do you live? Do you have anyone at home with you?

Unfortunately, people who haven't experienced this condition can't truly understand our situation. Even our closest loved ones, no matter how much they try, can't fully grasp it unless they've lived through it themselves. If my life ever becomes a bit more manageable, I plan to stop trying to explain it to others—it's exhausting and frustrating.

 

Yes, I do have someone at home with me—I have the best family, and I’m incredibly lucky.

Regarding my car accident, it happened a long time ago. Don’t we all have some form of permanent damage from various life incidents? No one goes through life pain-free. But, as you mentioned, hyperacusis is exhausting and frustrating. I also wish I could stop trying to explain it to others. I don’t like how it’s becoming such a significant part of my personality.

 

@2049v, how are you doing? How do you deal with your hyperacusis? I have earmuffs I wear, but I would like to add some other form of hearing protection. Do you have any recommendation for earmuffs? Mine don’t keep out the loud noises very well.