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Thread: hearing and vision loss

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    Wink hearing and vision loss

    Has any one here lost all their vision or hearing from
    Wegs. Or know any one who has anyone got a Cochlear implant for hearing.

    I lost most of my hearing at time my diagnosis. It wiped out hearing in my only good ear that had only mild or moderate loss, along with my balance. The other ear had serious hearing loss from years of infections and surgeries and was missing all the bones of middle ear so conduction of sound was very limited.

    Once i was able to attain a drug induced remission I was able to get a BAHA on my deaf ear side that sent sounds through my skull to the inner ear on the side that had some limited hearing even with a strong behind the ear (BTE) hearing aid. With the BAHA my hearing greatly improved.

    My vision loss is attributed to glaucoma which is side effect of diabetes, Wegs and the meds used to treat both. My vision is also impaired by dry eye caused by inflammation of eyelids from Wegs and side effects of meds I have to take to try reduce high eye pressure causing glaucoma. Pred meds increase the eye pressure. Trying to save some hearing by increasing pred meds might cause more vision loss so it is a tough balancing act.

    After my flare caused by over reaction to two Covid vaccination I experience some brief period of total hearing lost. My pred meds were increase and much of the hearing returned but with a significant decrease. Some of the decrease might be attributed loss from aging. I am 80now.

    My word discrimination since Wegs has declined from around 80% to about 45% at last testing a couple years ago. I am waiting to get test again since I had another episode of total hearing loss last week. My pred meds were increased again to 60 mg day and enough hearing returned so I can hear most conversations in a quiet setting if I have my BAHA on. Other wise the world is almost total silent.

    Like one cartoon I received stated. I don't mind aging but the side effects do bother me. The wink sign belongs here.
    Last edited by drz; 01-29-2024 at 12:51 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: hearing and vision loss

    Quote Originally Posted by drz View Post
    Like one cartoon I received stated. I don't mind aging but the side effects do bother me. The wink sign belongs here.
    I think you 're doing great at the age of 80

    About the hearing loss: I once lost my hearing for about three weeks. That was years prior to the diagnosis of Wegs.
    Luckily I got all my hearing back, but I remember this period as a very strange, somewhat alienating time.
    To sit in the company of several people, not being able to determinate any of the words they say is something I will never forget!

    I'm curious to know if you already got the test-results back...
    Living with WG/GPA since june 2010...

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    Default Re: hearing and vision loss

    My hearing will be tested again next month. So far it is still adequate for most things.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: hearing and vision loss

    I lost 30 percent of my hearing after I was diagnosed with Weg's. I wear hearing aids now, but I still miss quite a bit. I have real bad titanites, and that blocks a lot. My left ear is the worse my eustachian tube collapsed and will not open up. This causes lots of ear infections, and I have had six tubes put into my ear. I did try a balloon dilation procedure, but it unfortunately did not work for me.

    My brother in law has a Cochlear implant and had no problems with it. After a couple of weeks he was more used to it. Now he has a head full of hair and it covers it up a bit. He definitely has a better quality of life now.

    Hope all goes well with your hearing test.

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    Default Re: hearing and vision loss

    Hi drz

    I would be very interested to know what symptoms you (or others) are having with their eyes. I am flaring and my eyes are somewhat blurry, not all the time and wearing my reading glasses is not resolving it. Could this be vasculitis related?
    Vadculitis hasn't affected my eyes before.
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

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    Default Re: hearing and vision loss

    Quote Originally Posted by freakyschizogirl View Post
    Hi drz

    I would be very interested to know what symptoms you (or others) are having with their eyes. I am flaring and my eyes are somewhat blurry, not all the time and wearing my reading glasses is not resolving it. Could this be vasculitis related?
    Vaculitis hasn't affected my eyes before.
    Inflammation of eyes and eyelids is one of my main symptoms of Wegs. When i took higher dosage of pred meds to try preserve my hearing my eyes were much better along with other symptoms like nasal bleeding and crusting. Those problems came back as I cut my pred meds down to 30 mg day. The meds i take for glaucoma also make my vision worse, lot of blurring and excess tears from dry eyes.
    Knowledge is power! Wisdom is using it to make good decisions!

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