Just diagnosed with Otosclerosis

Hello there! Newbie here. Been suffering with tinnitus for 7 months now. I went quite deaf in one ear over a few days in May '16 and then this loud hissing noise started in one ear a few days after that. I was initially diagnosed with fluid in my ear after a cold but after 2 months the fluid cleared but no difference to my hearing or tinnitus.

Anyway I was referred to ENT, had a CT scan and finally got my diagnosis of otosclerosis last week, I'm only 37. Really struggling with the tinnitus to be honest it's very volatile, there's always a hissing noise, can be loud or quiet but sometimes there's a ringing too and a head pressure, it's bad today. I can hear it above everything, it doesn't help that I'm almost deaf in my bad ear.

Anyway treatment wise I was told there's an operation I can have to help with the hearing but it may not help the tinnitus so I'm waiting to try out a hearing aid first and see how that goes. I'm feeling quite down about the future to be honest, I have 2 young children at home.

Thank you if you've read this far! Sorry if I've gone on a bit I'm new to this!

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23 Replies

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  • Hello and welcome to the forum! Please don't apologise for posting - you've come to the right place for sharing how you're feeling, and hopefully you will find this community supportive and helpful.

    I don't know how much reading you've already done on otosclerosis, but you might find our factsheet helpful if you haven't already read it - it can be found at tinnitus.org.uk/otosclerosis

    Best wishes

    Nic

  • Hi there and thank you. I've just read the fact sheet, very intetrsting, though I have done a fair bit of reading up these last few months.

    I suppose what I really want to know is whether or not the tinnitus will improve when I get my hearing aid and also any advice on deciding whether or not to go for the op. I'm seeing my consultant again in 6 months time to take it from there.

    Can't believe this is happening to me! But I suppose we all feel like that! Seems unfair so young, but who said life was fair eh? X

  • Hi Mrs Hanson, I can't help with advice for otosclerosis but I can say that my hearing aid definitely quietens my T - when I take it off before I go to bed my T gradually reappears. I wear it all day plus a masker on my other ear - white noise. T is a very difficult and unwanted intrusion into our lives so vent your feelings all you want on here! Love Angela xx

  • Welcome to the community Mrshanson.

    My son had his ear bones taken out at the age of 7.

    He can hear from it about 30-40db

    He is now 21 and doing great.

    I would ask your doctor about Nortryptaline as it as helped me a lot and stopped head tinnitus and low drone but still have a high hiss in both ears.

    ..lots of love glynis

  • Hi Angela hi Glynis thank you for replying. Angela that's really good to know the hearing aids help your tinnitus, my consultant says an aid will definitely help mine, if only while I'm wearing it. It will definitely help the hearing loss which is quite severe.

    It's just the thought of having it for the rest of my life I'm struggling with. Like I said I'm only 37 (38 next week)

    Glynis i think I'd be really nervous about taking medication, I've always been really healthy, barely even get colds, think that's why I'm struggling so much with this.

    Please tell me you get used to tinnitus? Or it gets better? It's been nearly 8 months and no improvement yet x

  • Hi Mrshanson, My hearing aids definitely help me both with hearing and tinnitus. I feel so much better when I am wearing them. As for getting used to the tinnitus I can only speak from my own experience. In October 2014 following a cold virus I lost 40 to 50% of my hearing and developed tinnitus. My main noise is pulsatile but I also have droning and hissing. I was a complete mess at the beginning - depressed, anxious - thinking life not worth living. Now I have my life back - I have learnt to live with my noises although they are nowhere near as bad as at the beginning - made worse, I believe, by the stress of it all. I`m now at a point where even when I hear the noises they don`t bother me anymore.

    Things that helped me - counselling, joining the BTA and this forum and I also go to a support group every Wednesday - the one that Glynis helps to run.

    It`s early days for you - give it time and hopefully things will get better for you too. The counsellor once said to me - "one morning you`ll wake up and tinnitus won`t be the first thing you think about" - and she was right.

    Love Lynne xx

  • Thank you Lynne and hello. Your post gives me hope. I really hope I can start to get used to it and move on when I get my hearing aid x

  • I wholeheartedly agree with all of Lynne's post. It's almost 2 yrs since my T appeared and I don't think about or hear it for much of the time. When I do hear it, I am nowhere near as bothered as I was, say, 8 months into it. Time and patience heals. Of course, we have to take care of our hearing too and avoid loud environments - unless wearing the BTA earplugs. Love Angela xx

  • Hello Mrs Hanson

    I would like to chip in with my experience of hearing aids, as most have said already they really do make a difference and i can only agree. I have moderate hearing loss in both ears and needless to say my T is sometimes rather bothersome, but all is not lost, although my T is constant /loud most of the time , as soon as i put my little beauties in as i affectionately call them my T is somewhat reduced and on good days when my T is behaving its almost none existent, so any doubts you have about wearing hearing aids i would say you have nothing to fear.

    Lastly your aids will help you cope better from day to day and you wont feel so agitated or stressed about your T and in the long run that's a bonus, these little devices once gotten used to will benefit you no end, i have been wearing both of mine now getting on 3 years and i can honestly say they are a god send and i wouldn't want to be with out them

    All the Best

    Dave

  • Thank you Dave and hello. It's really good to hear some positive stories, I feel more like there is light at the end of my tunnel now

    It's good to hear from other sufferers to be honest, I don't feel my family or friends really understand though they try to be sympathetic. I feel as though I'm dealing with a life-changing condition, but maybe those around me find that a bit dramatic, as I've not got a terminal illness or lost a limb etc..

    It's an invisible condition so I suppose I'm expected to just carry on regardless, especially as a mum to young children, they don't care! Lol.

    Thanks everyone for taking the time to reply, it really does help x

  • Hi There

    Its funny most sufferers will tell you the same thing regarding family and friends they don't really understand what you are going through or whats going on , that doesn't mean to say they don't care, its a job for us to get our heads round it at the best of times let alone trying to explain to others how we feel, we all deal with this condition differently some just shrug it off, others find it difficult to deal with at the start, but rest assured as time passes it does get a lot easier to accept it and move on with life, we all have our ups and downs that's true life is never simple.

    Only other advice i can give is don't treat as a life changer merely as a minor re-adjustment, you will in time soon adapt and find ways of coping better just give it a little time , remember life is never over.

    Take care .

    All the Best

    Dave.

  • Hi again Mrshanson, Yes success stories were the beginning of recovery for me. I had hope at last. If you join the BTA you will get a quarterly magazine which contains success stories. I found these most beneficial and whenever I was having a bad time would read and reread them. There may still be some on the new BTA Website - I know they were on the old site. Worth having a look. Love Lynne xx

  • To my knowledge N.H.S hearing aids don't do much for Tinnitus, on the other hand, Spectsavers are about the best but they are expensive at around £ 700. They filter out all background noise, including Tinnitus. My wife is almost deaf in one year and she is on the waiting list for a Cochilar Implant ( N.H.S ) She has severe Tinnitus including Hissing or roaring sound as you have. I've read the the literature about these implants and it is impressive: many people report complete silence from Tinnitus after their op.

    Hopefully things will improve for you. Best Wishes.

  • Hi not sure if you are still on the forum but I have just been diagnosed too. Did you know that pregnancy can make the condition a lot worse? How are you getting on?x

  • Hi there! I'm not around here much nowadays but still get notifications. I did know that pregnancy can make otosclerosis worse, something to do with hormones. I've had 2 pregnancies and can't say my hearing was worse while pregnant, but then I wasn't diagnosed until my youngest was 3.

    I'm doing great at the moment, I was fitted with nhs hearing aids in February and they're fantastic! They help a lot with the tinnitus as well as hearing loss.

    So have you had all your options explained to you?

    Congratulations on your much longed-for pregnancy too, it's a shame for this to happen at this time but it's totally manageable - Bev x

  • Hi Bev, thanks so much for the speedy reply! I have only found out I got it this week that I have it so am at early stage. I am going to see if I can get hearing aids this week and am very excited about it. Never thought I would be excited about having hearing aids but after having tinnitus for a year now, I am hopeful it might help. Do you get pain in your ears too? I get a thickness and a sort of uncomfortable feeling deep in my ears that I could describe a bit like swollen glands. xx

  • I get like a congested feeling in my ears sometimes, like with a cold, it's just my left ear effected with otosclerosis and I get a strange creaky sound/feeling in it.

    So how did yours start? Did you notice hearing loss first or the tinnitus? I know what you mean about never expecting to be excited about hearing aids! I'm 38 and it's last thing I expected at my age -Bev x

  • Hi

    I noticed the tinnitus first I think, then the hearing loss. It has got a lot worse over the last 2-3 weeks and I now have substantial hearing loss in my right ear with tinnitus also starting in my left ear 2 weeks ago. Its been life changing and I am learning to adjust but some days I just feel like crying why me? xx

  • I know just what you mean, I've done a lot of 'why me?' crying. So your hearing is getting worse as your pregnancy progresses? How far along are you?

    I lost my hearing first, quite suddenly, though with hindsight my hearing had been going for a while, then the tinnitus started a few days later. I thought my other ear was fine until I had a hearing test but I'm told that's just standard hearing loss and not otosclerosis.

    I really turned a corner when I got my hearing aids though, it took a few more months but now I can honestly say it doesn't bother me 99% of the time, I've learnt to tune it out mostly-Bev x

  • I am 14 weeks so early days really but my hearing and tinnitus seems to be getting worse each week. Just when I think it can't get any worse it seems to step up another gear. How did you find out about your otosclerosis, did it take a while to get diagnosed and where did you get your hearing aids from if you don't mind me asking? I have not been recommended anywhere and am in the early stages of exploring hearing aids but have 2 appointments this week at different places about them. You give me hope when you say they have really helped you. Would you consider surgery as an option? xx

  • Are you in the U.K.? If you are you will get them on the NHS from your local hospital audiology department.

    I was 9 months from first symptoms to getting a diagnosis, I had tests and a ct scan to diagnose, plus my mum has otosclerosis and lost her hearing in one ear at the same age as me -Bev x

  • Yes in the UK but saw a private consultant so not sure how to get an NHS referral unless I start process again?x

  • Not sure to be honest? If you started again with a gp referral it might set you back again?

    I'm really happy with my NHS aids and you get free batteries and maintenance which you don't when you go private.

    I've thought long and hard about the stapedectomy operation, it was offered, but I've decided it's too risky for me just now, but maybe in the future? Who knows -Bev x

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