I Have Otosclerosis and Have Never Known Silence

Hi, I am Arielle, an almost 40-year-old woman that has lived with tinnitus my whole life. Or at least it feels like it. I have Otosclerosis and it was diagnosed early with severe hearing loss. At the age of 17 I got a Stapedectomy in each ear and my hearing drastically improved. The downside to that was the tinnitus drastically increased. I hear the full spectrum of sounds from static, crickets/cicadas, high frequency ring, low frequency bell tone, clicks, staccato bursts, heartbeat and sometimes even phantom music. I have learned to live with it and don't know what silence sounds like anyway.

I came to this support forum to try to learn more about my tinnitus since I had never thought to research it before. Chalk that up to youth I think. I was told I have this condition that no one can do anything about and to just live with it. Now it is just getting damned annoying and I am finding that what I may be experiencing might be dangerous in the long run.

The tinnitus started changing when I got pregnant 6 years ago into a movement-based heartbeat crashing sound. I didn't think much of it because tinnitus was a way of life for me and pregnancy changed so many other things I chose not to dwell on another sound that I eventually I learned to ignore.

However now it is changing again. My pulsatile tinnitus whooshing heartbeat is still there but it is followed by a 'hooting' noise much like air escaping. I went to the ENT just in case my ear drum was perforated but it was not. He called for a CT, which of course came back clear. Now the hooting has merged with the pulsatile tinnitus and I have a throbbing rubbing noise... rubbing like the sound you hear when you try to slide off a plastic or leather seat. All of this is very movement or compression based.

I need to know what questions to ask to advocate for myself when my ENT tells me to live with it. And, honestly, until now I didn't know that I needed to know that there are other people out there that have also never known true silence. Thanks for sticking with me through this long "intro". I hope to learn from you all and I hope there is someone out there that chooses to respond to this in any way. Be it a virtual high five for living with this mess my whole life or any sort of information/insight into my new sound.

 

It sucks but glad you’re still trucking on. I don’t have much to offer you but just wanted to say hello.

 

Thank you for the quick hello!

 

Hi Arielle. Is it possible your hearing has declined? I ask because I did a couple quick Google searches and found references to Otosclerosis worsening after pregnancy. I am not familiar with Otosclerosis or Stapedectomy, so I could be completely confusing or misunderstanding the references. But I do know that sometimes people notice tinnitus before they realize they have hearing loss. For me, I didn’t even realize how much hearing I had lost until after an audiogram. With that much of a change, it might be helpful to have your hearing checked.

Instead of an ENT, could you possibly see an inner ear specialist? They are ENTs but much more specialized and maybe more familiar with your condition, too.

 

Thanks for posting, but I'm sorry you are going through this. Whatever it is is probably some spike and will go away. Is your hearing loss conductive or do you have sensory loss as well?

 

Thank you for your concern and insight. I have been getting my hearing checked annually since I was a teenager. I have had a very slow gradual decline since the surgeries. I was tested again after the pregnancy and there wasn't any noticeable increase in the rate of that decline. The only new symptom I had was the onset of pulsatile tinnitus.

I may look into your suggestion of an inner ear specialist however. I didn't even know there was such a thing!

 

According to my last hearing test my nerves and eardrum are operating well. It is the calcification of the inner ear bones that is the culprit of my hearing loss. I do wear hearing aids to try to help mask the tinnitus and amplify sound. I hope this weird hooting/rubbing/heartbeat noise is just a spike and not indicative of something more serious.

 

Doctors who handle the middle ear (where the ear bones are) and inner ear (nerves) are otologists or neurotologists. I agree with @Tinker Bell and think you should upgrade. There are a lot of really good ENTs, but an otologist has more training in ears.

But I am sorry you are going through this and hope you can find some comfort from Tinnitus Talk and know that you are definitely not alone. I went through a similar spike a while back where I was totally convinced it was pulsatile and had to have it ruled out. Sometimes pulsatile tinnitus can be fixed. But unfortunately "normal" tinnitus can be musical, pulsating, grating metal, dental drill, jingling, bubbles, crickets, casino, carnival music, hooting like an owl or cooing like a dove. All that doesn't mean yours is NOT pulsatile, so you could still look into that, but again -- probably at otologist. If it is truly pulsatile then you should read the posts by @tiniturtle. But given your history...