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

Posted by audioman @audioman, Mar 8 7:19am

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.

I should also add… I've had a strange numb sensation around my ear lobe or on parts of my outer ear. Like lidocaine injections when it's bad… but less sensitive to touch in general.

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My heart goes out to you, not just as a SSHL person, but also because music is your passion.

My first thoughts are, your immune system was jeopardized because of the infection, and you were even more at risk than usual for damage to hearing caused by noise.

Unless something soon brings that hearing back, I suggest you muster up your advocacy skills and find out best ways to deal with tinnitus, which is often the brain's way of making up for lost sounds, and hearing loss advocacy. Kudos for starting your search about this and getting to help!

In the future, you may want to consider lip reading with facial expression and body language skills. I love watching musical performances for the emotions almost as much as the music.

Please keep me posted about your progress. Thanks for sharing.

Cheryl

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Hi @audioman, allow me to introduce you to fellow musician and audio engineer @mark888 and @earlyaudio, who are also living with hearing loss and threats to their careers. It is a massive and overwhelming world that you've been thrown into, but you're asking the right questions and you've come to a community that can help guide you through with members like @th1 @julieo4 @tonyinmi and more.

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I am so sorry to hear this and imagine this must be devastating. SSNL is different than typical sensorineural hearing loss because typical SNL happens gradually over time. That doesn't make it easier, but it gives a person time to get used to it. Here is a link to an organization of adult musicians with hearing loss. The members of this group may be able to provide some supportive information. https://www.musicianswithhearingloss.org Please keep us posted.

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@audioman You may be interested in the Association of Adult Musician's with Hearing Loss. They've hosted several virtual meetings. You can find out more about them here: https://www.musicianswithhearingloss.org/wp/
Tony in Michigan

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Thanks all for the replies and links. Will check these out.

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Another question… perhaps an audiologist or experienced researcher could help…

When doing pure tone tests, why does sound from my right ear seem audible in my left? This also occurs with noise masking the left ear. Above my "break point" of 7000Hz sounds entering the right ear are apparent in either the center of my head or left. This diminished above 12kHz… but even at 14kHz on a right ear test, some of the sound is present in the center/left of my head.

One more question… When listening to these pure tones above the 7000Hz range, it causes an increased feeling of pressure in my inner ear, sinus cavity, and behind my right eyeball. Seems weird. Would love to ask my ENT but the nurse hasn't called back.

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@audioman

Another question… perhaps an audiologist or experienced researcher could help…

When doing pure tone tests, why does sound from my right ear seem audible in my left? This also occurs with noise masking the left ear. Above my "break point" of 7000Hz sounds entering the right ear are apparent in either the center of my head or left. This diminished above 12kHz… but even at 14kHz on a right ear test, some of the sound is present in the center/left of my head.

One more question… When listening to these pure tones above the 7000Hz range, it causes an increased feeling of pressure in my inner ear, sinus cavity, and behind my right eyeball. Seems weird. Would love to ask my ENT but the nurse hasn't called back.

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The fact that you are able to describe all of these changes should be a huge help in getting the support you seek. The question is whether it will come from an audiologist or an ENT. Keep documenting everything.

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@julieo4

The fact that you are able to describe all of these changes should be a huge help in getting the support you seek. The question is whether it will come from an audiologist or an ENT. Keep documenting everything.

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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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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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@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

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.

Jump to this post

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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