Audio engineer with SSHL *** Mid diagnosis. Learning. Searching

Posted by audioman @audioman, Mar 8, 2021

I'm 42. Life long musician. Own a recording studio. My ears feed my family.... one week ago, I was at home reading a book and POOF. My right ear felt strange. Some ringing. Went away quickly... but I had lost 7000hz and up in my right ear. Using a very good phone app and calibrated headphones, I started pure-tone testing. Went immediately to ENT next day. Their audiogram mirrored my results.... my right ear lost everything above 7000hz. There had been a loud noise (fast transient) at work that evening... but nothing much over 90-100db and only for a split second. Still... possible that did physical damage. I also had C19 infection in Jan and have been struggling with sinus congestion since then.

A week later, I'm waiting on an MRI and follow up ENT appointment. I have no diagnosis. The hearing has not returned, despite starting prednisone early. The tinnitus has become constant.... it's VERY high pitched. Like the sound of a buzzing light bulb. I'm managing that with ambient noise. I can still work, but find it difficult in comparison.... but it's not impossible. I still have a very good left ear and despite pure tone struggles, my right ear can hear complex waves above 7000Hz. They are less clear and less loud... but the ear can hear thing up in that range imperfectly.

So... I've read constantly this week. SSHL. Different types of damage and loss. Different treatments. Hearing aids. It's a massive and overwhelming world. What might you suggest? Here are some questions...

Can I adapt and continue working like this?
Are there audiologist who specialize in helping musicians (high frequency, full range testing)? Most tend to limit their tests to 8kHz.
How aggressive should I be in speeding this process? I'm disappointed my ENT scheduled my MRI for a week later. This is an emergency in my life.
What advice would you give? Given my life has been dedicated to working with my ears... I'm fairly devastated.

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@audioman

Just a follow up to complete this story....

I had an MRI last Friday and ENT follow up today. The MRI was "negative and unremarkable" according to the notes. My second audiogram showed some improvement in both ears between 150Hz and 7000Hz, but the right ear is still deaf at 8kHZ and above... I only know about the above high frequency deafness thanks to my own testing, and experience living with this change. The world sounds different on that side.

My ENT dismissed me. He was pleased with my improvement. Added another round of low dose steroids as a shot in the dark to see if additional improvement would be found, but I have no follow-ups and was given a final report similar to the following... "You are 42 and maybe do have some high frequency hearing loss, but there's nothing we can do for that. From my vantage point, you have great hearing relative to many people. Your audiogram looks fantastic. Be glad you didn't lose more in the critical range." He understood my relationship to hearing and work... and suggested I could work around it using my good ear and the remaining function in my right. Technically he is correct, but I have no official diagnosis beyond "Age and NIHL or SSHL"

I am going to another ENT for a second opinion, but only as a formality. I am thankful my loss was not worse, thankful for a clean MRI, and will learn to live with the constant tinnitus and hyperacusis. I'm also thankful to learn about the clinical trials for FX322, and hope that one day science will help me restore the loss in my most valued sense...
*** tried to post a link... Google FX322 for more information ***

Hearing for me is like taste for a chef, sight for a painter, muscles for an athlete, etc. It's a crushing and educational experience. I hope to use this as motivation to help other people who suffer from hearing loss and tinnitus. While sound therapy is an unusual tool, I believe that my skills in this arena may be helpful in developing palliative treatments for those who struggle... with tinnitus especially. Maybe one day I can find a way to be useful in that regard. Beyond treatment developments, it's the only positive thing I can offer from this experience.

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Keep in mind that lip reading would help whether you have loss or not, and the sooner you start learning the easier it is

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@audioman

Just a follow up to complete this story....

I had an MRI last Friday and ENT follow up today. The MRI was "negative and unremarkable" according to the notes. My second audiogram showed some improvement in both ears between 150Hz and 7000Hz, but the right ear is still deaf at 8kHZ and above... I only know about the above high frequency deafness thanks to my own testing, and experience living with this change. The world sounds different on that side.

My ENT dismissed me. He was pleased with my improvement. Added another round of low dose steroids as a shot in the dark to see if additional improvement would be found, but I have no follow-ups and was given a final report similar to the following... "You are 42 and maybe do have some high frequency hearing loss, but there's nothing we can do for that. From my vantage point, you have great hearing relative to many people. Your audiogram looks fantastic. Be glad you didn't lose more in the critical range." He understood my relationship to hearing and work... and suggested I could work around it using my good ear and the remaining function in my right. Technically he is correct, but I have no official diagnosis beyond "Age and NIHL or SSHL"

I am going to another ENT for a second opinion, but only as a formality. I am thankful my loss was not worse, thankful for a clean MRI, and will learn to live with the constant tinnitus and hyperacusis. I'm also thankful to learn about the clinical trials for FX322, and hope that one day science will help me restore the loss in my most valued sense...
*** tried to post a link... Google FX322 for more information ***

Hearing for me is like taste for a chef, sight for a painter, muscles for an athlete, etc. It's a crushing and educational experience. I hope to use this as motivation to help other people who suffer from hearing loss and tinnitus. While sound therapy is an unusual tool, I believe that my skills in this arena may be helpful in developing palliative treatments for those who struggle... with tinnitus especially. Maybe one day I can find a way to be useful in that regard. Beyond treatment developments, it's the only positive thing I can offer from this experience.

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Thank you for sharing this follow up information. Please do everything you can to protect your hearing. You can prevent further loss. Excess noise will further damage your hearing. I'm sure you know that, and hope that ENT emphasized that. It's frustrating to feel you've been written off by a healthcare professional. I felt that way at age 21 when I was told I'd be deaf by age 40 and should just learn to live with it. Thankfully, I was strong enough and curious enough to ask questions and learn to help myself. I was also fortunate to find people who were willing to help me through HLAA. So thankful. People who are motivated to help others are in short supply and big demand. I hope and pray you will be able to follow through on that.

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@audioman

Just a follow up to complete this story....

I had an MRI last Friday and ENT follow up today. The MRI was "negative and unremarkable" according to the notes. My second audiogram showed some improvement in both ears between 150Hz and 7000Hz, but the right ear is still deaf at 8kHZ and above... I only know about the above high frequency deafness thanks to my own testing, and experience living with this change. The world sounds different on that side.

My ENT dismissed me. He was pleased with my improvement. Added another round of low dose steroids as a shot in the dark to see if additional improvement would be found, but I have no follow-ups and was given a final report similar to the following... "You are 42 and maybe do have some high frequency hearing loss, but there's nothing we can do for that. From my vantage point, you have great hearing relative to many people. Your audiogram looks fantastic. Be glad you didn't lose more in the critical range." He understood my relationship to hearing and work... and suggested I could work around it using my good ear and the remaining function in my right. Technically he is correct, but I have no official diagnosis beyond "Age and NIHL or SSHL"

I am going to another ENT for a second opinion, but only as a formality. I am thankful my loss was not worse, thankful for a clean MRI, and will learn to live with the constant tinnitus and hyperacusis. I'm also thankful to learn about the clinical trials for FX322, and hope that one day science will help me restore the loss in my most valued sense...
*** tried to post a link... Google FX322 for more information ***

Hearing for me is like taste for a chef, sight for a painter, muscles for an athlete, etc. It's a crushing and educational experience. I hope to use this as motivation to help other people who suffer from hearing loss and tinnitus. While sound therapy is an unusual tool, I believe that my skills in this arena may be helpful in developing palliative treatments for those who struggle... with tinnitus especially. Maybe one day I can find a way to be useful in that regard. Beyond treatment developments, it's the only positive thing I can offer from this experience.

Jump to this post

@audioman I noticed that you wished to post a URL to a google search with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post are not spam, so allow me to post it here.

- Search results for FX322 https://www.google.com/search?q=fx+322&oq=FX&aqs=chrome.2.69i57j69i59j35i39j69i65l2j69i61j69i60l2.2062j0j7&sourceid=chrome&ie=UTF-8

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@colleenyoung

@audioman I noticed that you wished to post a URL to a google search with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post are not spam, so allow me to post it here.

- Search results for FX322 https://www.google.com/search?q=fx+322&oq=FX&aqs=chrome.2.69i57j69i59j35i39j69i65l2j69i61j69i60l2.2062j0j7&sourceid=chrome&ie=UTF-8

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This study is fascinating. The word 'cure' has not been related to SNHL until recently. Thank you for sharing.

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Last interesting addition...

Obviously my industry is chiefly concerned with hearing. Luckily several LEGENDARY audio engineers had a very deep and detailed conversation about hearing, working with hearing loss, and understanding hearing from the perspective of "audio workers"

PureMix Mentors | Andrew Talks to Awesome People Hearing Health Panel Discussion
https://youtu.be/KTJKsskbTxQ

The panel includes Susan Rogers (engineer for Purple Rain and Prince), Giles Martin (son of George Martin producer of Beatles records), etc.

REPLY
@audioman

Last interesting addition...

Obviously my industry is chiefly concerned with hearing. Luckily several LEGENDARY audio engineers had a very deep and detailed conversation about hearing, working with hearing loss, and understanding hearing from the perspective of "audio workers"

PureMix Mentors | Andrew Talks to Awesome People Hearing Health Panel Discussion
https://youtu.be/KTJKsskbTxQ

The panel includes Susan Rogers (engineer for Purple Rain and Prince), Giles Martin (son of George Martin producer of Beatles records), etc.

Jump to this post

This organization might be of interest to you.
Association of Adult Musicians with Hearing Loss
https://www.musicianswithhearingloss.org

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Hi, I'm 35 year old male with no preexisting conditions. I play the guitar and have done a lot of stereotypical things guitarists do, like playing unreasonably loud.

I had a smaller room I was cranking a 50w Marshall in, and typically I was fine with the foam ear plugs I was using, never noticed any issues at all. Then I tried some ear plugs that were supposed to protect the ears, but not filter out as many frequencies so you hear the amp better. It seemed normal while I was playing.

After about 1 hour of playing I pulled my plugs out and noticed my ears felt really full and inflamed, and they were very sensitive to loud noises now. Typically I'd listen to music in my car stereo at around 20, now I'd have to turn it down to 11 or 12 to listen comfortably. This went on for 4 or 5 months before it finally seemed to resolve itself and hearing was normal again. I could tell my ears were still more vulnerable than before, but I was pretty close to 100%.

About a year or so after I thought this was over, I had another incident helping a friend setup a guitar rig, and he hit a chord on a loud amp that damaged my left ear. I've lost a large amount of the bass frequencies I used to have in that ear, and if I hear anything above a certain volume my ear starts ringing (happens above 85db). In general, my left ear feels more "open and hollow" where my right ear does not.

If I even speak above a certain volume, my ear starts ringing. Another odd thing, if I take my voice and force to the right direction so only my right ear hears most of what I'm saying, it sounds normal. If I do this with my left ear, my voice sounds "hollow" and ofc my ear rings. Also both my ears are now prone to getting that full and inflamed feeling if I listen to music at even moderate levels. It goes away quickly after I stop listening, but still this is happening at 85db which is not sustainable.

My ENT said there's nothing he can do, and it will resolve itself. After a year+, it hasn't resolved itself at all. I was hoping maybe someone could point me in the right direction of the right kind of specialist who may be able to help. Thanks.

REPLY
@jt01

Hi, I'm 35 year old male with no preexisting conditions. I play the guitar and have done a lot of stereotypical things guitarists do, like playing unreasonably loud.

I had a smaller room I was cranking a 50w Marshall in, and typically I was fine with the foam ear plugs I was using, never noticed any issues at all. Then I tried some ear plugs that were supposed to protect the ears, but not filter out as many frequencies so you hear the amp better. It seemed normal while I was playing.

After about 1 hour of playing I pulled my plugs out and noticed my ears felt really full and inflamed, and they were very sensitive to loud noises now. Typically I'd listen to music in my car stereo at around 20, now I'd have to turn it down to 11 or 12 to listen comfortably. This went on for 4 or 5 months before it finally seemed to resolve itself and hearing was normal again. I could tell my ears were still more vulnerable than before, but I was pretty close to 100%.

About a year or so after I thought this was over, I had another incident helping a friend setup a guitar rig, and he hit a chord on a loud amp that damaged my left ear. I've lost a large amount of the bass frequencies I used to have in that ear, and if I hear anything above a certain volume my ear starts ringing (happens above 85db). In general, my left ear feels more "open and hollow" where my right ear does not.

If I even speak above a certain volume, my ear starts ringing. Another odd thing, if I take my voice and force to the right direction so only my right ear hears most of what I'm saying, it sounds normal. If I do this with my left ear, my voice sounds "hollow" and ofc my ear rings. Also both my ears are now prone to getting that full and inflamed feeling if I listen to music at even moderate levels. It goes away quickly after I stop listening, but still this is happening at 85db which is not sustainable.

My ENT said there's nothing he can do, and it will resolve itself. After a year+, it hasn't resolved itself at all. I was hoping maybe someone could point me in the right direction of the right kind of specialist who may be able to help. Thanks.

Jump to this post

Hey @jt01, I moved your post about low-frequency hearing loss and hearing sensitivity to this existing discussion:
- Audio engineer with SSHL *** Mid diagnosis. Learning. Searching https://connect.mayoclinic.org/discussion/audio-engineer-with-sshl-mid-diagnosis-learning-searching/

I did this so you can connect with fellow musician and audio engineers @mark888 and @earlyaudio @audioman as well as read the past helpful posts from members like @julieo4 @joyces and others.

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@joyces

Is audioman's description on what he believes he's hearing best for an ENT...or someone higher up, like a neruotologist?

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Hey I’m sorry for what you are going through. My career was destroyed by hyperacusis. The tinnitus in my left ear is like a dentist drill and I’m deaf above 4kHz. My hyperacusis makes it difficult to carry on a conversation indoors. I’m better outside without reflective surfaces. My right ear is still good. I went for corrective surgery at the Silverstein Institute and they said that I have a hyper mobile stapes bone, the result of acoustic shock. In my case it was an explosion on a film set that did the initial damage. Then I shot a deer without hearing protection a few months later. The symptoms started about a day later with sudden onset hearing loss, tinnitus and hyperacusis during a conversation. My surgery was not successful and I’m still suffering hyperacusis which is much worse than the dentist drill in my ear. I cannot go inside a room with people inside without hearing protection. S and t plosives during conversation are like starting at the sun. Just painful. I also am a musician with a recording studio and have a mixing room tuned for my needs so that I can still play amplified music on the other side of the glass.
Good luck, it’s been almost ten years for me and I’m getting better mentally, and noise canceling AirPods with a little white noise or rain sounds help if I have to go inside a room full of people.

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@jt01

Hi, I'm 35 year old male with no preexisting conditions. I play the guitar and have done a lot of stereotypical things guitarists do, like playing unreasonably loud.

I had a smaller room I was cranking a 50w Marshall in, and typically I was fine with the foam ear plugs I was using, never noticed any issues at all. Then I tried some ear plugs that were supposed to protect the ears, but not filter out as many frequencies so you hear the amp better. It seemed normal while I was playing.

After about 1 hour of playing I pulled my plugs out and noticed my ears felt really full and inflamed, and they were very sensitive to loud noises now. Typically I'd listen to music in my car stereo at around 20, now I'd have to turn it down to 11 or 12 to listen comfortably. This went on for 4 or 5 months before it finally seemed to resolve itself and hearing was normal again. I could tell my ears were still more vulnerable than before, but I was pretty close to 100%.

About a year or so after I thought this was over, I had another incident helping a friend setup a guitar rig, and he hit a chord on a loud amp that damaged my left ear. I've lost a large amount of the bass frequencies I used to have in that ear, and if I hear anything above a certain volume my ear starts ringing (happens above 85db). In general, my left ear feels more "open and hollow" where my right ear does not.

If I even speak above a certain volume, my ear starts ringing. Another odd thing, if I take my voice and force to the right direction so only my right ear hears most of what I'm saying, it sounds normal. If I do this with my left ear, my voice sounds "hollow" and ofc my ear rings. Also both my ears are now prone to getting that full and inflamed feeling if I listen to music at even moderate levels. It goes away quickly after I stop listening, but still this is happening at 85db which is not sustainable.

My ENT said there's nothing he can do, and it will resolve itself. After a year+, it hasn't resolved itself at all. I was hoping maybe someone could point me in the right direction of the right kind of specialist who may be able to help. Thanks.

Jump to this post

Your situation sounds unusual. Most likely the ringing you are getting is tinnitus that is brought on by certain stimuli. You probably know that loud music and/or other loud sounds can damage the inner ear hair cells that send sound signals to the brain.

If you live in an area where there is a hospital affiliated with a graduate level audiology program, you might want to go there for testing. They are more likely to have experience with unusual situations, and they are inclined to want to do research on those cases.

Have you talked to your ENT recently?

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