← Return to Audio engineer with SSHL *** Mid diagnosis. Learning. Searching

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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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Replies to "Just a follow up to complete this story.... I had an MRI last Friday and ENT..."

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

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.

@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