Otosclerosis and Tinnitus

Discussion in 'Support' started by aura, Aug 7, 2013.

tinnitus forum
    1. aura

      aura Member

      Location:
      romania
      Tinnitus Since:
      05.2012
      It s been one year since I have been diagnosed with incipient otosclerosis.I don t have hearing loss, but my T is very disturbing. Anyone here dealing with the same thing?
       
    2. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, Aura,

      Yes, I was diagnosed with otosclerosis about 3 years ago. I have some hearing loss, and the otosclerosis was diagnosed based on the fact that I have conductive hearing loss, according to the tuning-fork test.

      I have both hissing tinnitus, and pulsating (heartbeat) tinnitus.

      My doctors suggested having a stapedectomy, but I have not done so yet. I'm a little bit afraid of what might happen if it makes the tinnitus or pulsating even worse!

      Tell me about your tinnitus. What is it like? What are you doing to cope?
       
    3. aura

      aura Member

      Location:
      romania
      Tinnitus Since:
      05.2012
      well, my T was the reason i went to see the doctor. it appeared more than 1 year ago and followed an ear infection ( medium otitis) . For 2 or 3 weeks i had very loud T, dizzines, nausea and of course insomnia , anxiety and the feeling that i was going insane! This was by far the hardest period of my life, i had to take sleeping pills but there were moments when the sound woke me up in the middle of the niht, even though i was sedated! I went to see many doctors, and after lots of tests the diagnosis was incipient otosclerosis. The only abnormal test was my acoustic reflex, that s why i m not very sure about this diagnosis..still hoping it isn t otosclerosis. I have three different sounds in my ears, one of them high pitched and the others like a steam locomotive.i m sorry, i cant describe them very well since english is not my native language:( Anyway, this autumn i will test my hearing again, even though last year it was just fine.
       
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    4. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Wow! You have gone through a lot this past year. I understand your feelings of uncertainty about the otosclerosis, just based on that one abnormal test result. I'm the same way; I am not totally convinced that my problem is otosclerosis, and I'm not anxious to have surgery for it, unless it would really make things better.

      I think you've done an excellent job of describing the three sounds you hear; your English is very good!

      So, you have a hissing sound, a high-pitched ringing sound, and a third sound? So do I; I have hissing, a high-pitched constant ringing, and a pulsating beat that I can only hear at night, in time with my heartbeat.

      Are you able to sleep now? I hope so; I know how hard that is. It's taken me awhile to be able to sleep again. Are you feeling calmer now, too? And are you taking any medication for sleep and/or anxiousness?

      It will be interesting to hear what the results of your hearing test are. Maybe you do have some high-frequency hearing loss, even though it isn't noticeable.

      Best wishes,
      Karen
       
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    5. aura

      aura Member

      Location:
      romania
      Tinnitus Since:
      05.2012
      well, actually there are 2 sounds that i am constantly hearing: the hissing sound, in both ears, witch is the easyest to mask and somethyng in my right ear like electricity high tension wires, it s hard to describe.Loud noise, stress, lack of sleep, hormonal changes exacerbate my T, wich becomes high pitched , but it fades away after a period. I also have 2 other sounds that come and go, pulsatile tinnitus and clicking tinnitus(this one only for a few seconds).The way i m coping with it? Not very well..i tried many drugs, like betaserc (betahistine) b group vitamines and sleeping pills but only for a short period of time, last summer. They are getting worse even when i m using the hair dryer or the blender, but i have 2 ear plugs with me all the time and i m not afraid to use them!:)
      The thing that helps me a lot in masking my T is the sound of refrigerator, the sound of traffic in the summer and the sound of hot water in pipes in the winter( when opened windows is not an option).
      The thing is that 1 week ago i started to hear a new sound in my right ear, something like a mosquito but not so high pitched.I totaly freaked out, thinking that it took me a year to get use to the sounds in my head, this one was just too much!! Taking a trip to the mountains and relaxing for a couple of days really helped me a lot, the mosquito sound disappeared and i can say that in the last week my T was at it s lowest point since this nightmare began! It s so wonderful, it s been the happiest week of my life, i can sleep much better , i don t know for how long is going to last but i intend to enjoy every second of it! I have also been taking 2 magnezium pills each night, maybe this helped me too!
      Have you tried Florical? My doctor said that it coud help me, but it s not available in my country.
       
    6. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      It seems as if your new sound might have happened because of increased hearing loss. Do you think that could be a possibility?

      Yes, I have heard of Florical, and it is available in the U.S. I've attached a link below about otosclerosis, and treatment for it. This article says to take Florical for two years, and that should be enough time to slow the progression of the disease.
      http://www.chicagoear.com/Medical Info/otosclerosis.html

      I'm a little afraid of taking a high dose of fluoride for two years! Have you heard of anyone who has taken it, and did they have good results?

      Have you considered stapedectomy, and are there doctors in Romania who will perform that surgery?
       
    7. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Aura,

      I just re-read your post. So, you have pulsating and clicking sounds, too? Did all of your sounds develop gradually, or did they start suddenly?

      I had mild tinnitus and hearing loss for a number of years, but my tinnitus got much worse after taking a blood pressure drug. That's when my pulsating started, and my loud hissing, and high-pitched ringing. I just wondered if yours got worse after a specific event.

      It sounds like we're experiencing a lot of the same things, so maybe it is all related to otosclerosis!?
       
    8. aura

      aura Member

      Location:
      romania
      Tinnitus Since:
      05.2012
      I don t think stapedectomy is an option for me, or at least not yet, since i don t have any hearing loss! My T started suddenly after i had an ear infection and my ear wax removed.I don t know exactly what was the trigger ( otosclerosis/otitis), but the doctors assured me that my T will last forever:(The clicking sound lasts for 5-10 seconds ( maybe it s palatal myoclonus); the hissing and the high pitched sound all day long!!
       
    9. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      I've heard of so many people whose tinnitus started after an ear infection and/or ear wax removal! It's hard to say what the actual trigger was, but the end result is that you have the PT and the hissing/ringing and clicking.

      Yes, stapedectomy is an option for people who have conductive hearing loss, which is what I have, based on the testing. There is no evidence, however, that stapedectomy would help PT. I've heard that, in some cases, it may improve regular tinnitus.

      As far as coping with it, the things that have worked best for me are adequate sleep (when that's possible!), remaining calm and relaxed, finding ways to distract myself, exercise, and keeping my blood pressure low. For me, blood pressure has been a component in the onset of the PT, so I'm doing everything I can to keep my blood pressure under control --- naturally, without drugs. So far, it's working!

      Aura, I wish you the best, and hope you'll keep us posted on how you're doing. Here's hoping we both find a cause for our PT, or at least a reduction in the noises in our heads!
       
    10. NikoD
      English

      NikoD Member

      Tinnitus Since:
      11/2012
      After reading how MIT are researching the use of nanotechnology and bone-repair surgery. I began searching to see if I could find any papers or research on using Nanotech for Ostosclerosis.

      Nanotech is currently in its early stage. Ostosclerosis is a condition which causes hearing loss and is quite common. Here is an excerpt taken from patient.co.uk.

      Abnormal bone growth is the cause of hearing loss which reduces the movement of the stapes and affects how much sound is transferred to the cochlear.

      So why is it a good candidate for nanotech?

      Surgery is the only form of treatment for this condition. It has some risks - although very low. Involves removing the stapes and replacing it with a metal or plastic shaped stapes. In some cases there is improvement of 50%+.

      Nanotechnology is currently being used for targeted drug delivery and may be used for this condition to aid the delivery of drugs to the middle ear targeting the stapes directly. The payload is something which should be discussed next.

      Could Sodium Fluoride be a suitable payload as it causes osteoporosis?
       
    11. Tara721
      Depressed

      Tara721 Member

      Location:
      USA
      Tinnitus Since:
      08/01/2013
      Cause of Tinnitus:
      Otosclerosis
      I have otosclerosis in both ears, which has lead to my having T. I read a few things online (I know you can't believe it all!) about how a stapededtomy can sometimes reduce or eliminate the T completely. Anyone have any experience with that? I also read in my research that the use of hearing aids can sometimes reduce the T because the hearing aids allow you to hear much better which "drowns" out the T I suppose?
       
    12. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, Tara,

      It is possible that hearing aids might work for you. I tried them, but they didn't work for me, because I also have pulsating tinnitus, and the hearing aid amplified it. For you, it might be worth a try. There are so many hearing aids out there on the market today; you might find success with one of them. There are some people on this forum who have Widex hearing aids with Zen chimes; that is supposed to mask tinnitus.
       
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    13. Tara721
      Depressed

      Tara721 Member

      Location:
      USA
      Tinnitus Since:
      08/01/2013
      Cause of Tinnitus:
      Otosclerosis
      :nailbiting:Hi- I have otosclerosis in both ears. I went to my ENT this morning and was told my hearing has rapidly decreased in just 9 short months. Previously it was just decreased in my right ear, now it is both, which makes sense as I have noticed new T in my left ear (I've had it in my right since last summer) Anyway, he gave me 2 options: hearing aids, or a stapedectomy. Just curious if any fellow T sufferers have any experience with either one of these. Obviously neither option is a guarantee my T will go away. I'm thinking the hearing aids may help to mask the T, I've read a few things online about the stapedectomy, some patients have decreased T, some have new T, some have more T than they did before the procedure.

      So, what would you do?Hearing aids or ear surgery?
       
    14. NeoM
      Moonlighting

      NeoM Member

      Location:
      America
      Tinnitus Since:
      10/31/2013
      I don't know. Hearing aids don't require surgery, but I read supposedly surgery can provide 20db improvement which is pretty significant.

      But I don't have otosclerosis though.
       
    15. Rochelle
      Fine

      Rochelle Member

      Location:
      California
      Tinnitus Since:
      06/2008
      I got hearing aid a couple of years after being told I probably have otosclerosis in both ears. The tinnitus never bother me then- so maybe they did help. I also say think this is true because as my hearing has gotten worse- by tinnitus is louder and now it DOES bother me. So now, I'm seriously looking into surgery once my condition has been confirmed.
       
    16. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Rochelle,

      I've been told I have otosclerosis, too, and will be interested to hear what you decide to do about the stapedectomy surgery. From what I've read, the doctors recommend doing one ear at a time. Which ear would you choose to have it done to first?
       
      • Like Like x 1
    17. Aerosaz

      Aerosaz Member

      Tinnitus Since:
      01/2013
      Hi,

      I've just got back from an appointment with my consultant where I've agreed to go for the surgery - Stapedectomy to treat the Otosclerosis in my right ear which is significantly worse than my left ear. The Otoscelrosis started probably around 18 months ago and gradually, with me only going to see a doctor when I finally noticed my hearing was worse in my right ear (noticeable when talking on the phone and I hadn't noticed for so long that I had, without realising, been relying on lip reading for some time and also that the annoying whooshing-type tinnitus was getting worse and was related to that)
      I haven't tried hearing aids, the consultant did ask if i would be happy to but I just feel like i already know i won't like them, I'm a dancer and a musician and would feel like i'd have to have my hair covering my ears all the time. I've agreed to go for surgery but it won't be until probably january but I'm not sure i'm doing the right thing, as i know there are a lot of risks with the surgery and it's scary just how long the recovery time. I am a very active person and i train hard so the thought of no heavy lifting etc for 3 weeks or more post op is scary, as is the complications that could happen. But also i feel like i have no choice as i don't want hearing aids and equally i can't just remain like this. I want a chance to hear properly again. I'm just a bit scared and confused right now, don't know if i'm making the right choice going for surgery, I did ask him a lot of questions but since coming home i feel like i have loads more questions still to ask....
      has anyone been through this and the surgery that i can talk to please....any advice??
       
    18. Tara721
      Depressed

      Tara721 Member

      Location:
      USA
      Tinnitus Since:
      08/01/2013
      Cause of Tinnitus:
      Otosclerosis
      I, too, have struggled for the past year on what to do about my otosclerosis. I wasn't sure what direction I wanted to take. I have come to a decision that I am going to have a stapedectomy done in my right ear, and hopefully my left at some point in the future. If you are thinking of having this procedure done the best advice I can give you is not to settle for the first surgeon you talk to. My Ent referred me to a local surgeon and I was not impressed, so I went to see another surgeon in Boston at an eye & ear hospital and was really pleased with him. Not sure if it's related or coincidence but the worse my hearing becomes the louder my T is. Hoping that once I get the surgery and can hear better the T will become "masked".
       
    19. Carmen Lowe

      Carmen Lowe Member

      Tinnitus Since:
      08/2016
      Cause of Tinnitus:
      Otosclerosis
      I know this is an old post, but i would have posted questions about many of these topics.... wondering if anyone else out there is dealing with tinnitus due to otosclerosis. My hearing loss seems to be increasing and the tinnitus getting louder. Hard to concentrate in my quiet office and am looong into hearing aids and surgery. Just looking for others going through this same annoying and life altering journey .
       
    20. GregCA
      Frustrated

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Yes, you're not alone. Bad T here too. Did surgery, did not get rid of T (but it did change its characteristics). I have a hearing aid, it doesn't do much.
      I have cochlear otosclerosis too: mixed conductive & sensorineural losses. The surgery addressed the former reasonably, but not the latter of course.

      I hope you're on a treatment to arrest the progression of the disease (commonly, Fluoride).
       
    21. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Greg, what happens to the cochlear with this? Can changes actually be seen or are they inferred from other test results?
       
    22. GregCA
      Frustrated

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      The cochlea (no r) gets affected as well, which brings sensorineural losses, which are not repairable (unlike the conductive losses).
      I don't know what you mean by "can be seen" because you don't typically "see" a cochlea in a living human, but you can run imaging (CT) where you can spot specific patterns, and the audiogram will show sensorineural losses.
      I suppose you can take a look at a cochlea on a dead body and see it there yes.
       
    23. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      By seen, I did mean imaging. That's what I most wondered: could it be visualized. So, would it be specific patterns noted on imaging matched with the presence of HF loss? I imagine this is neuro-otology level stuff?

      I suspect the best otology occurs at autopsy. Lucky us.
       
    24. vegasjon

      vegasjon Member

      Tinnitus Since:
      2012
      You and me both. Ain't we lucky.
       

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