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Do you have any hearing loss?

Found out when I was 13 I had 50% loss in my left ear. It rings constantly and has only got worse. Guessing from the guns, power tools, and loud cars.
 
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Sign and lip reading.
They had to cut my auditory nerves to remove tumors growing near brain stem. So no hearing aids or cochlear implants. Tried to get an Aiditory Brain Implant but the Implant did not work. I function ok. Deaf people actually are more challenging than hearing :).
Alot of functioning is routine email, IM, and text phones acceptance over the past 15 yrs make things much easier. Crowds and large meetings suck though.
I only have one ear, born that way. One side is fine, and a nub on the other side. Couple years ago I finally got a cochlear implant because I got one of those head colds that settled in my good ear. Couldn't hear shit, and the doctor said it could take up to 6 weeks to clear. For the first 2 weeks I was fine, but one night I woke up having a full on panic attack that lasted 4 days. I was convinced that if I slept, I'd wake up deaf.

Got an emergency tube put in that immediately stopped the panic attack. I have never slept better than that first night after the tube. And scheduled a cochlear as soon as I could. Pretty scary thinking you won't hear ever again.
 
I only have one ear, born that way. One side is fine, and a nub on the other side. Couple years ago I finally got a cochlear implant because I got one of those head colds that settled in my good ear. Couldn't hear shit, and the doctor said it could take up to 6 weeks to clear. For the first 2 weeks I was fine, but one night I woke up having a full on panic attack that lasted 4 days. I was convinced that if I slept, I'd wake up deaf.

Got an emergency tube put in that immediately stopped the panic attack. I have never slept better than that first night after the tube. And scheduled a cochlear as soon as I could. Pretty scary thinking you won't hear ever again.
The movie The Sound of Metal covers that well. About a heavy metal drummer that loses his hearing suddenly. And how everything in his life gets turned upside down.
I can empathize with how u felt. It's a pretty big shock to the system.
 
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The movie The Sound of Metal covers that well. About a heavy metal drummer that loses his hearing suddenly. And how everything in his life gets turned upside down.
I can empathize with how u felt. It's a pretty big shock to the system.
Ok, now I'll have to watch that. It's always in my suggested titles on Hulu or Netflix. Those streaming sites know me better than I do, apparently.

Also, I remember the first few days after the Implant being rough. The world was so loud. Echo location was weird, too. I'd hear a bird that sounded right next to my head, and look up to seeing way up in a tree.
 
Ok, now I'll have to watch that. It's always in my suggested titles on Hulu or Netflix. Those streaming sites know me better than I do, apparently.
The first half is really good. But the second half u know where it's going and well it's sad.
 
Yep. Aggressive form. Brain, spinal, tongue, skin, lungs, kidney, eye chasim, pituitary, Etc.
Sorry about these challenges you’ve been dealt. I hope you get some decent management of it. Are you participating in any studies? Your life would make a very interesting story on the discovery channel.
 
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Sorry about these challenges you’ve been dealt. I hope you get some decent management of it. Are you participating in any studies? Your life would make a very interesting story on the discovery channel.
Originally I went to UIHC for the ABI. Once that didn't work I moved my care to Wisconsin College of Medicine. Live in Milwaukee. My care is managed with about every Specialist under the sun. No studies NF2 research isn't considered a big money maker.
Spent about 3 months in UIHC with meningitis infection. Was near long term rehab area. Some folks that had lost limbs and motor skills. So there's always someone in worse shape than u. Kinda why I get a kick out of posting on here and reading things folks complain about. Different perspectives :)
 
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Originally I went to UIHC for the ABI. Once that didn't work I moved my care to Wisconsin College of Medicine. Live in Milwaukee. My care is managed with about every Specialist under the sun. No studies NF2 research isn't considered a big money maker.
Spent about 3 months in UIHC with meningitis infection. Was near long term rehab area. Some folks that had lost limbs and motor skills. So there's always someone in worse shape than u. Kinda why I get a kick out of posting on here and reading things folks complain about. Different perspectives :)
Exactly my thoughts. It can be difficult not to trivialize peoples issues when you know some people who have to deal with so much more. I’m appreciative how you are so open about your condition (screen name even). Your perspective can help so many people who struggle with more manageable conditions.

I took a quick gander at clinicaltrials.gov. You are right, way too few studies. But it looks like there are 5 or 6 drug studies recruiting. I imagine with all the exciting genetic therapies on the horizon, something will hit soon.
 
Exactly my thoughts. It can be difficult not to trivialize peoples issues when you know some people who have to deal with so much more. I’m appreciative how you are so open about your condition (screen name even). Your perspective can help so many people who struggle with more manageable conditions.

I took a quick gander at clinicaltrials.gov. You are right, way too few studies. But it looks like there are 5 or 6 drug studies recruiting. I imagine with all the exciting genetic therapies on the horizon, something will hit soon.
It's the amount of surgeries that affect the NF2 patient. Honestly the Brain surgeries aren't a huge deal. Anything that involves the spine or motor function system is when it's been hairy for me.
Try not to trivialize others problems. My issue is when it's a reoccurring thing for some folks. Narcissist who don't emphasize with others plight.
 
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