Recently Diagnosed with Otosclerosis and Right Ear Tinnitus

[stev3po]

Hello,

First time post, new to tinnitus. Getting desperate and needed to vent. I'm Steve, M/32/170lbs.

I was recently diagnosed with Otosclerosis. I've been having dizziness (my chief complaint) and right ear tinnitus. It all started when I used a neti pot with a sinus infection I had in Dec '19. I had the sensation that fluid got into my ear. There was no dizziness at that time, and it only affected my right ear. Tinnitus went away after a few days, didn't think anything of it. (side note, I got into a snowboarding accident and fractured my humurous Jan '20, but didn't have any symptoms following). Then Feb '20 I suddenly started feeling dizzy, ringing was back (still in right ear). I felt something was wrong. I went to the ER. They thought I had fluid in my ears, diagnosed me with ETD and told me to take sudafed and flonase if that didn't help. Saw another doc a few weeks later since things weren't getting better and my anxiety was getting worse. I finally got to see an ENT this week (3/10/20), thinking I had fluid in my ears, and they did some hearing tests. Apparently there was no fluid. Affected ear (right) had some slight conductive hearing loss, still could hear at normal level but lower than the left (unaffected) ear. But it wasn't enough for them to conclude conductive hearing loss. When I went in to see the actual doc, he saw 'Schwartz sign'. Then he did the Weber Test which is the test with the tuning fork on your forehead and I heard the sound louder in the affected ear. He said 'you just saved yourself an MRI' and proceeded to diagnose me with otosclerosis. Then explained the treatment options.

I'm not saying he's wrong, but I don't have a family history of the disease. My chief complaint is dizziness, which is rare among those with otosclerosis (or usually mild). My hearing loss is only slight. What would you all recommend in terms of next steps? Should I push for the MRI? This is really starting to scare me as I've heard dizziness doesn't get better or corrected after surgery, and I'm not a great candidate for it anyways as I'm younger and don't have much hearing loss. I almost can't bear this constant dizziness, and it's really got me in a depressed state of mind. The ringing doesn't help.

Thank you so much if you've read this far! Please share any tips, help, or coping mechanisms or with anything else you can think of!

Thanks,
Steve

 

[GregCA]

Steve,
If I were in your shoes, I'd do the MRI. I'd also do another hearing test at another facility.
Are you comfortable posting your audiogram here? (blank out personal info)
Did you do any stapedial reflex test?
How's your word recognition score?

There is a treatment with heavy doses of Fluoride that attempts to arrest the progress of the disease. Since my stapedotomy, which coincided roughly with my starting taking Fluoride, my hearing hasn't degraded.

Have you given some thoughts to surgery?

 

[stev3po]

Hi GregCA,

Thanks for the reply! I will post my test results as soon as I can. I believe speech recog was good. I will push for an MRI and additional hearing test. I hope my insurance will still cover that.

I would absolutely consider surgery. Especially if it could help my dizziness. At this point the doc said he'd follow up with me in 4 months and do another hearing test. If it's worse, we go from there.

Do most otosclerosis patients have an improvement in dizziness after surgery? And it seems like some of them have less T.

I'll also check out the fluoride treatment options. Are there any side effects you've had from that? If not I feel I should be on it immediately!

Thanks again for the support!

Steve

 

[GregCA]

Hi GregCA,

Thanks for the reply! I will post my test results as soon as I can. I believe speech recog was good. I will push for an MRI and additional hearing test. I hope my insurance will still cover that.

I would absolutely consider surgery. Especially if it could help my dizziness. At this point the doc said he'd follow up with me in 4 months and do another hearing test. If it's worse, we go from there.

Do most otosclerosis patients have an improvement in dizziness after surgery? And it seems like some of them have less T.

I'll also check out the fluoride treatment options. Are there any side effects you've had from that? If not I feel I should be on it immediately!

Thanks again for the support!

Steve

Hi Steve,

There's a lot of info online about outcomes of stapedotomies. Look it up on pubmed for scientific papers.

As for Fluoride, the typical short term side-effect is stomach upset - and luckily I don't seem to be very affected by that. However, longer term side effects are harder to predict: we're talking dosage that is multiple orders of magnitude what a "normal person" would get via Fluoride add-on in water or toothpaste. It isn't clear what long term is going to bring, and certain nations have banned Fluoride as a supplement because it they consider it dangerous.

So I'm damned if I do, and damned if I don't.

Ask your doctor if s/he would think of a downside to get you on Fluoride right away.

Good luck!

 

[stev3po]

Hello all,

Had a full on breakdown today in front of my family. Had a tough day and night yesterday, and decided to call my aunt who's a nurse this morning. After that it just hit me that I might never get my life back as I knew it. I just sat there and cried in front of my family. Cried more than I ever have in my life. Let alone in front of anyone. They were supportive. And they even cried too. But I don't know how to beat this. I feel frozen and I feel like I don't have a way to deal with this. I don't have my life any more. The dizziness is debilitating. And it just fucking sucks. One day you wake up with a dizziness and ringing that's not really explainable and you can't enjoy life or have coffee or alcohol anymore? Damn. It is truly life altering. Where did this come from? I'm sure you can all relate.

 

[Charburchar]

Hello all,

Had a full on breakdown today in front of my family. Had a tough day and night yesterday, and decided to call my aunt who's a nurse this morning. After that it just hit me that I might never get my life back as I knew it. I just sat there and cried in front of my family. Cried more than I ever have in my life. Let alone in front of anyone. They were supportive. And they even cried too. But I don't know how to beat this. I feel frozen and I feel like I don't have a way to deal with this. I don't have my life any more. The dizziness is debilitating. And it just fucking sucks. One day you wake up with a dizziness and ringing that's not really explainable and you can't enjoy life or have coffee or alcohol anymore? Damn. It is truly life altering. Where did this come from? I'm sure you can all relate.

I'm so sorry you're experiencing this. For the first time the other night I burst into tears thinking about my tinnitus (I'm sorry to hear you are also affected by dizziness), and how it's changed my life. It's good that you've got family to share this with, and I hope in time it will get better for you.

 

[stev3po]

I'm so sorry you're experiencing this. For the first time the other night I burst into tears thinking about my tinnitus (I'm sorry to hear you are also affected by dizziness), and how it's changed my life.

Thank you for the sentiment. I'm feeling better about the ringing now, I may be more accustomed to it. But the dizziness had been very hard to deal with. I've had a few more breakdowns since. But I'm still gonna try to figure this out.

 

[stev3po]

@GregCA

Here is my audiogram! Let me know what you think.

Still dizziness is the main symptom. I'm wondering if Otosclerosis is causing some dizziness by interfering with my vestibular function somehow. Or if it was a misdiagnosis. Still have right ear T that has either gotten better or just more manageable.

Steve

 

[GregCA]

@GregCA

Here is my audiogram! Let me know what you think.

Still dizziness is the main symptom. I'm wondering if Otosclerosis is causing some dizziness by interfering with my vestibular function somehow. Or if it was a misdiagnosis. Still have right ear T that has either gotten better or just more manageable.

Steve

I don't see much of an air-bone gap in your audiogram. Did your doctor think it supported the otosclerosis diagnosis?

 

[stev3po]

I don't see much of an air-bone gap in your audiogram. Did your doctor think it supported the otosclerosis diagnosis?

They didn't at first. They even explained my slight hearing loss is likely NOT due to my inner ear bones. At this point I still thought I had fluid in my ear. They explained there's no fluid in my ears, or they'd have seen it on the ear pressure test.

Then they saw 'schwartz sign' and did the weber test. I heard the weber test in the affected ear, then they went back to the audiogram and said there WAS conductive hearing loss. They said I was saved from an MRI by a positive weber test.

It left me a little frustrated since I feel dizziness (which seems to be vision related, trouble focusing far away, worse with quick head movements, some complex wall or floor patterns appear to be 'breathing', light sensitivity) as my main symptom. When I spoke to the ENT on the phone after the initial diagnosis, he said I might have a vestibulocochlear deficit. I had my eyes tested and they are 20/20 and healthy. I have a second opinion with another ENT in 3 weeks, although its a telemedicine appointment. I think I will need vestibular testing and potentially vestibular rehab, but I can't do that until this virus blows over. It's still possible I had a mild concussion in January when I got into a snowboarding accident. But it doesn't seem likely since the symptoms started a month after the accident. So... I have to sit on this for now.

What are your thoughts? I'm skeptical I even have otosclerosis now, but it's certainly likely I have it at least in early stages.

 

[GregCA]

What are your thoughts? I'm skeptical I even have otosclerosis now, but it's certainly likely I have it at least in early stages.

I don't know. I'm curious about the second opinion you'll be getting.