Sudden Hearing Loss twice in the same ear within one year

Hearing Loss
#1

Hi everyone, I just registered, and want to say hi.

I am a professional classical musician, concertizes internationally. In Jan 2017, I had an episode of sudden hearing loss on both ears, though my right was way worse then my left. Went to see an ENT at the Stanford Ear Nose Throat Clinic, and was told that the chance of me getting another sudden hearing loss is greater than being struck by lightening. Well, two days ago, I woke up with strange high pitch ringing in my right ear (the ear with moderate to severe hearing loss from Jan). Had a rehearsal at noon, realized I was hearing constant distortion from myself and others talking, not to mention my instrument, it was unbearable due to its loud volume. Went to my ENT, after an audiogram, was diagnosed with yet ANOTHER hearing loss. Right now, I have severe to profound hearing loss, with zero words recognition (due to severe distortion). My ENT started me on high dose steroids, but I am not hopeful as it didn’t work last time. In fact, he administrated steroids injection in Jan, and made my hearing worse. MRI is clear, no autoimmune disease. My ENT and I are both baffled as he has NEVER seen anyone having TWO sudden hearing loss in the same ear within one year. He thought I had a virus attack, now he doesn’t think so anymore due to my second attack. I am jcurious, does anyone in this forum has experienced or heard the same situation? If so, what was the diagnoses?

#2

What’s your audiogram look like?

#3

My right ear currently has 60-70 dsb loss with zero words recogniztion.

#4

60 to 70db is a moderately severe loss.

#5

Thanks for the correction, Zebras. Do you know of anyone that experienced sudden hearing loss twice on the same ear?

#6

Hi 7d,

First let me tell you my story. When you read you will find some similarities. I’m 29 years old. I’ve diagnosed with bilateral Sensorineural Hearing Loss when I was 14. It wasn’t a sudden hearing loss. I’ve suffered from SHL since I was 10. Everybody thought at that time that I was a pensive, dreamy person. After diagnosed with SHL I’ve started to use hearing aids with both ears. My audiogram showed 60-70 db range loss for my right ear and 55-65 db range loss for my left. In 2013 I’ve decided to change my hearing aids. My new audiogram showed 70-80 db range loss for my right ear and 65-75 db range loss for my left. Then in October 2016 I suddenly couldn’t hear with my left ear. Left hearing aid started to give me distorted sounds. At first, I thought that left hearing aid started to fail. And I made an appointment to see my audiologist. But I started to doubt there was something wrong with my ear. Audiologist controlled the aid and looked my ear canal. She said hearing aid worked perfectly and suggested me to see an ENT immediately. Before I went to ENT, I had taken new hearing test and results for my left ear showed 95-105db range. ENT diagnosed me with Sudden Sensorineural Hearing loss and started oral corticosteroid treatment. He thought it was probably caused by viral infection. Unfortunately, I lost my left ear completely. They call these type of hearing loss as “idiopathic sensorineural hearing loss”.

Now I want to make some suggestions for you. First, worst-case scenario you won’t get better and 60-70 db range will become permanent. If that will be the case you can use hearing aids easily because that range indicate you have moderate-to-severe loss. And I believe your speech recognition score will increase with hearing aids. Another problem you will face in that worst-case scenario is hearing music. You said you were professional musician. I am a civil engineer. After graduating I decided to change my professional career. I’ve played piano since I was 5 and classical music is my whole life. And now I try to get my PhD in music theory. You keep being a good musician with hearing aids. Don’t worry about that. And there is 50-50 chance you recover totally. If you want to increase that percentage you can ask your ENT about experimental treatments. There is a phase 3 clinical trial for acute SSHL. It is called AM-111.

And if you decide to use hearing aids, I suggest you wait 2-3 weeks. Maybe you will recover completely in 2-3 weeks and there will be no need for hearing aids. Don’t lose your hope. I think scientists are 5-10 years behind from a permanent solution.

I hope you will get better soon.

2 Likes
#7

I imagine the ENT talked/checked this but just in case…

There are drugs that are ototoxic – cause hearing loss. You may be overly susceptible to one.

Google ototoxic and see the list.

#8

This is likely too early, but at some time I’d encourage you to look into the stages of grief. You will deal with them at some point. Here’s a potential reference: Five Stages of Grief by Elisabeth Kubler Ross & David Kessler

#9

My sincere condolences. The Stanford Ear Nose Throat Clinic if it’s affiliated with Stanford University and its hearing research labs (Stem cells and all in which I donate annually) are probably the best experts available to help you understand your loss. One thing I can share on my end is that I have no answer why I have severe to profound hearing loss when I was small. Genetic tests were inconclusive and multiple hypotheses exist such as exposure to loud sounds or an antibiotic hearing loss side effect (from Streptomycin or other oxtotoxic drugs) when I was young.

All in all, I hope you find the root cause and will recover your hearing from the best experts available, but be hopeful and be prepared for all scenarios such as the one you have now. Prayers for a quick recovery and/or adaptation.

#10

Thank you for everyone’s kind reply!! I am currently Day 4 on steroids, so far nothing has changed, but I am keeping my fingers crossed.

Thank you Beethoven7 for sharing your story with me. I am very sorry that you have to go through such awful experience with your hearing! At this point, my audiologist told me since hearing aid will not help with distortion, the best thing to do is block my right ear when I teach or play. Though I canceled all my students, I had to teach one yesterday since she flew all the way from NC to take lessons. Due to the loud volume of the instrument, my distortion got worse today. I haven’t been taken any meds other than the anti-acid and prednisone prescribed to me few days ago. One thing is theMRI I took was without contrast. I think I’ll request my ENT to order an MRI with contrast to make sure I don’t have acoustic neuroma. I’m also trying to book an appointment with Dr Wade Chien at John Hopkins. He used to be a musician, and is currently leading the gene therapy there.

Thank you again for being so kind to my situation. I’ll keep you updated.

#11

Yikes @KenP I just read the list… NSAIDS are a cause of high frequency loss. I’ve been on these drugs for 15 years now. My drug is not on the list though, bit I will check it with my Rheumatologist next week. Thanks…

#12

I, too, have had two losses within 6 weeks of each other. My right ear was already at 70db (at least two prior losses) but has been stable for 2+ years. Left ear - my “crutch” ear, went from 35db to 65db in a very short period of time. I can now barely recognize or hear my own voice without my aids. I’ve worn them for a long time and am about to upgrade them. But what terrifies me is that we have no idea why this is happening. I have had the autoimmune testing, MRIs, CT scans, done the steroid injections and 70mg for a month orally (no improvements). I do see an Otologist tomorrow, but I sort of feel like that is to form a relationship for if/when I need to go to cochlear implants. So far, somehow my word recognition is good. What on earth is going on with my body to cause this? I try to feel fortunate that I’m not suffering from some terminal illness, but it is debilitating. I dread when my phone rings (although I know the new Widex aids should help that).
So basically, you aren’t alone. Although we don’t know why, there are others that are suffering this strange thing as well!