newbie with AIED

Taavinen

Taavinen

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Hi all. My name is Dave. Im 35yo. I'm a Registered Nurse at my local hospital. I've been battling vertigo and hearing loss for 2.5 years. When I first fell I'll in 2011 I suffered severe vertigo attacks and lost all my hearing in my R ear in only 4 months. I had suffered severe vestibular damage but I kept having vertigo attacks so I eventually I was given Gentamicin ablation of my right ear to stop the attacks.
Unfortunately this Easter I suddenly went totally deaf. It returned when I took myself to work and was given a 1 gram infusion of methylprednisolone.
I had every single diagnosis excluded including vestibular migraine, susacs, cogans, lupus, syphilis, vascular issues, neuroma, meniere's disease, MS, sarcoidosis, the list goes on.
Given that I went totally deaf in only 4 months in my right ear, odd vestibular damage (only my posterior loop was severely damaged) and my very good response to corticosteroids, my Dx of autoimmune inner ear disease was given.

I am unable to maintain my remaining hearing or vestibular function without prednisolone and am still going deaf so 7 weeks ago I had a right sided cochelar implant put in. I'm currently learning how to hear thru it :)

Before my operation we had commenced me on imuran but after ceasing it for surgery I unfortunately got severe vomiting on restarting so I am now on methotrexate. If this does not work there is talk of me trialling infliximab.
 
Well this is a quiet start lol.
Who else has a cochlear implant out there? It's a big learning curve for my brain but I have a lot of confidence in neuro-plasticity. It's sounding smoother by the day which is fantastic.
I'm actually in hospital at the moment on IV AB's as I got a bit of an infection after a head cold. My surgeon was concerned given that I'm immune suppressed we'd better be safe than sorry. I work at the hospital so I just go down stairs and visit my friends I work with lol.

I'm made keen on exercise. Can't wait to get back to the gym next week!
 
Taavinen said:
Well this is a quiet start lol.
Who else has a cochlear implant out there? It's a big learning curve for my brain but I have a lot of confidence in neuro-plasticity. It's sounding smoother by the day which is fantastic.
I'm actually in hospital at the moment on IV AB's as I got a bit of an infection after a head cold. My surgeon was concerned given that I'm immune suppressed we'd better be safe than sorry. I work at the hospital so I just go down stairs and visit my friends I work with lol.

I'm made keen on exercise. Can't wait to get back to the gym next week!
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Well, no CI here, but my daughter is a hoh RN. Working on her doctorate at the moment.

:wave:
 
Hello and welcome! Wow, that seems a lot to take on for being only 35 years old. :shock: I don't wear a CI, but hearing aids on both ears so I can't really help you there. It is indeed a long process, but I'm glad it's going well for you so far. :thumb:
 
blackhawksgirl said:
Hello and welcome! Wow, that seems a lot to take on for being only 35 years old. :shock: I don't wear a CI, but hearing aids on both ears so I can't really help you there. It is indeed a long process, but I'm glad it's going well for you so far. :thumb:
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Thanks!
I'm very much in the stage of acceptance with the illness now. Just take each day as it comes and focus on what I can do :)
 
Welcome Dave, I lost all my hearing overnight a little over 2 years ago due to illness. No warning what so ever. I have a CI in my left ear, totally deaf unaided in the right ear.
I have brutal tinnitus and get light headed all the time. With my CI, I can hear ok one on one with no background noise. In noisy situations I still have a lot of trouble. I still can not hear the tv, phone etc. I can totally relate with what you are going through.

I wish you the best and again welcome to AD.
 
Angel1989 said:
Welcome Dave, I lost all my hearing overnight a little over 2 years ago due to illness. No warning what so ever. I have a CI in my left ear, totally deaf unaided in the right ear.
I have brutal tinnitus and get light headed all the time. With my CI, I can hear ok one on one with no background noise. In noisy situations I still have a lot of trouble. I still can not hear the tv, phone etc. I can totally relate with what you are going through.

I wish you the best and again welcome to AD.
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Thank u. It's definitely a learning curve!
 
Wow! The MEDS!! Welcome, and good luck getting that CI tweaked. It's not for everyone, but you seem to have an attitude that will help you adapt. Namely, patience.
 
CyberMike said:
Wow! The MEDS!! Welcome, and good luck getting that CI tweaked. It's not for everyone, but you seem to have an attitude that will help you adapt. Namely, patience.
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Thanks mate :)
Yeah this illness has definitely taught me to be patient! Lol
I love my CI. Yes it's a big learning curve but I have a lot of knowledge into the ears of the brain and have read many articles on neuro plasticity so I have faith it will only get better.

I'm still in hospital on IV AB's at the moment and using my iPhone.
Can someone tell me how u 'like' a post on this forum please??
 
Not sure how it shows up on iPhone, but in the desktop version, there is a link with the word 'Like' as a label. It shows up when you hover the mouse over the post. In my browser, it shows up simply as the word 'Like' with an underline signifying it is a hyperlink. It kind of 'floats' over the page.
 
Taavinen said:
Thanks mate :)
Yeah this illness has definitely taught me to be patient! Lol
I love my CI. Yes it's a big learning curve but I have a lot of knowledge into the ears of the brain and have read many articles on neuro plasticity so I have faith it will only get better.

I'm still in hospital on IV AB's at the moment and using my iPhone.
Can someone tell me how u 'like' a post on this forum please??
Click to expand...

On the iPhone, just touch the screen within the post you want to like. The "like" button will show up at the bottom right.
 
Wirelessly posted

Hi Dave, welcome to AD!
May I ask from which part of Canada you're from?
 
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