Otosclerosis and Tinnitus

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

    1. aura

      aura Member Benefactor Ambassador Hall of Fame

      Location:
      Romania
      Tinnitus Since:
      05/2012
      Cause of Tinnitus:
      Unknown
      It has been one year since I was diagnosed with incipient otosclerosis. I don't have hearing loss, but my tinnitus is very disturbing. Anyone here dealing with the same thing?
       
    2. Karen
      Talkative

      Karen Manager Staff Benefactor Ambassador Hall of Fame

      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. AUTHOR
      AUTHOR
      aura

      aura Member Benefactor Ambassador Hall of Fame

      Location:
      Romania
      Tinnitus Since:
      05/2012
      Cause of Tinnitus:
      Unknown
      Well, my tinnitus 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 tinnitus, dizziness, 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 night, 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 is 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 can't 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 Ambassador Hall of Fame

      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. 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?
       
    6. 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...

      I'm 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 looking into hearing aids and surgery. Just looking for others going through this same annoying and life altering journey.
       
    7. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Yes, you're not alone. Bad tinnitus here too. I did surgery, it did not get rid of tinnitus (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).
       
    8. 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?
       
    9. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      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.
       
    10. Jambalaya

      Jambalaya Member

      Tinnitus Since:
      Sep 2015
      Cause of Tinnitus:
      Otosclerosis
      Hi folks,

      I’m a 31 year old male living in San Diego,CA and recently diagnosed with otosclerosis in both ears. I’ve been given the option of going through the stapedotomy surgery or using hearing aids. Since I have mild tinnitus in both ears, which I am able to bear, though it is more noticeable at night, I wanted to go ahead and get an opinion from a surgeon.

      I met with Dr. Harris at UCSD who seems to have considerable experience with this surgery. I’m still in two minds about going for the surgery because of the 1% chance of failure and complications. So, I’m reaching out to see if anybody else has got the surgery done in San Diego, through him or someone else and how the experience was or if you faced any complications or lasting discomforts.

      If the surgery was successful, how soon did the improvement in hearing show up?

      Thanks for all the support and info on this forum.
       
    11. Anima

      Anima Member

      Location:
      Mallorca (Illes Balears) EU
      Tinnitus Since:
      Feb/2004(Serious aggravation)April 2017
      Cause of Tinnitus:
      Antibiotics. Anaesthetic.
      Hi, I would recommend you a middle ear high-resolution computed tomography before any middle ear surgery is done. I was diagnosed otosclerosis 25 years ago, I had visited a myriad of ENT’s and they all confirmed that I had otosclerosis. Well, a few months back I had a high-resolution CT and it showed that my middle ear was absolutely perfect. No calcification of middle ear bonds at all, so a surgery would have only made things worst. Don’t give for granted you have otosclerosis despite the conventional tests done by your ENT, go for a high resolution scan to confirm the diagnose, then take your decision. I’m now so glad that I refused a stapedectomy that I didn’t need, knowing the nasty side effects it has when things go wrong. Good luck!
       
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    12. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      You make a good point about doing a high resolution CT before surgery, but the surgeon isn't going to proceed with a stapedotomy/stapedectomy if there are no signs of otosclerosis when he opens up your ear, so you aren't going to risk the "nasty side effects" as you mention.
      The beginning of a stapedotomy is much like exploratory surgery after the ear drum is lifted. If there are no signs of otosclerosis (it is visible to the surgeon), the surgeon will seal the ear drum back and abort the stapedotomy. He won't swap your perfect stapes bone for a prosthesis just "for the fun of it".
       
    13. dm222
      Fine

      dm222 Member

      Tinnitus Since:
      2018/02/23
      Cause of Tinnitus:
      after cold and ear syringing 20-30% of volume 06/2018
      Do you know the thing that vibrates and the doctor puts on the back of the ear and the in front of ear?
      I could hear the same in both in my left ear... Could this be the cause?
      My right ear it was much louder by the ear than in the back.

      Tympanogram says 0.28 left ear snd 0.5 right ear...
      The normal is above 0.3, should I be concerned?

      How were you diagnosed?
       
    14. Anima

      Anima Member

      Location:
      Mallorca (Illes Balears) EU
      Tinnitus Since:
      Feb/2004(Serious aggravation)April 2017
      Cause of Tinnitus:
      Antibiotics. Anaesthetic.
      A high-resolution CT is anaesthesia and antibiotics free, and non invasive at all. Do you mean you would let a doctor open up your ears when a CT can do the job safely and simply in a few minutes?
      I went through all kind of tests dozens of times, including the diapason, like yours, and the diagnosis was always OTOSCLEROSIS, which I didn’t have as the high-resolution CT has proved. So, take the shortest way and get a high-resolution CT, then you will know for sure if the problem is your middle ear. In my opinion, this will give you an accurate diagnosis and will save you time and money.
       
    15. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      No, that's not what I meant. I was reacting to:
      The stapedotomy would have been aborted when the surgeon would have realized that you didn't have signs of otosclerosis, so the surgery wouldn't have made things worse.

      Still, it is - of course - much better to do a CT scan beforehand to have another data point, but realize that high res CT doesn't always show O foci very clearly (it didn't in my case), and so one shouldn't think that going into surgery means the surgeon is going to replace your stapes with a prosthesis no matter what. S/he will only do it if it's necessary, as the beginning of the surgery process is of exploratory nature.
      It's not that obvious. Like I mentioned in a prior post: I did a high res CT and half a dozen doctors failed to diagnose otosclerosis from it.
      It's still a great tool, and like you, I'd always recommend to do it before undergoing any type of surgery (even exploratory).

      Just don't get fooled into thinking it's bullet-proof: absence of evidence isn't evidence of absence.
       
    16. Anima

      Anima Member

      Location:
      Mallorca (Illes Balears) EU
      Tinnitus Since:
      Feb/2004(Serious aggravation)April 2017
      Cause of Tinnitus:
      Antibiotics. Anaesthetic.
      GregCA, Yes, I agree on that, but I assume that the CT will be taken the right way and that the doctor/s will interpret it correctly, which is not always the case, I know. Thanks for your valuable opinion, Greg.
       
    17. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I was surprised how big of a difference doctors make: mine got reviewed by a radiologist (the first one to write the report after the images are taken), about half a dozen ENT doctors (who took somewhat blindly the written words of the radiologist as truth and were very reluctant to question it even with strong nudging on my part), and then an independent (out of my medical insurance network) neurotologist, who specifically asked me to bring my CT images and "not just the interpretation". This last doctor is the one who saw what all others didn't see.
       
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    18. Kriszti

      Kriszti Member Benefactor Hall of Fame

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      @aura, did it turn out to be otosclerosis? Given your recent posts, I guess that maybe it's not otosclerosis.

      You mention an abnormal ART result. In what sense was it abnormal?
       
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    19. AUTHOR
      AUTHOR
      aura

      aura Member Benefactor Ambassador Hall of Fame

      Location:
      Romania
      Tinnitus Since:
      05/2012
      Cause of Tinnitus:
      Unknown
      Hello.

      It wasn't otosclerosis after all.

      I have no idea what caused this.

      I have absent acoustic reflex. Well sometimes it is absent, sometimes present. Very strange.
       
    20. Kriszti

      Kriszti Member Benefactor Hall of Fame

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      Thanks, that's really strange. Could someone explain you why this may be happening?

      I also have absent acoustic reflex on the worst side which gives me low hum from time to time. I did not check it again when the low him was not present, because I suspect that ART may have contributed to developing UHF tinnitus as well.
       
    21. Stacken77
      Wishful

      Stacken77 Member Benefactor Hall of Fame

      Location:
      Sweden
      Tinnitus Since:
      10/2020
      Cause of Tinnitus:
      Noise (likely headphones & cars), Acoustic trauma did me in
      Just curious; what does it mean to have an "absent" acoustic reflex? That the stapedius or tensor tympani muscles doesn't contract and protect properly?
       
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    22. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Have you run enough tests to rule out otosclerosis?
       
    23. Kriszti

      Kriszti Member Benefactor Hall of Fame

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      No. I planned to get a HRCT, then postponed due to COVID-19. I went to quite some ENTs and they told me that it might be otosclerosis, but my hearing loss is too little to benefit from a surgery. Also, I think my low hum can be atypical MEM or middle ear related. I don't think that otosclerosis causes intermittent humming.
       
    24. Kriszti

      Kriszti Member Benefactor Hall of Fame

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      I guess so, but in a MEM group where people as a last result get tenotomy to cut their middle ear muscles I was told that it's not that clear that the stapedius reflex is there to protect from loud noises, but literature says that its main purpose is protection.
       
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    25. AUTHOR
      AUTHOR
      aura

      aura Member Benefactor Ambassador Hall of Fame

      Location:
      Romania
      Tinnitus Since:
      05/2012
      Cause of Tinnitus:
      Unknown
      I guess so. The strange thing is they found my AR to be present from time to time. In 80% of the medical clinics i've been to they couldn't find my AR.

      I don't know if there is something wrong with my ear or with the medical equipment they were using.

      I remember one time in particular, when the AR testing was EXTREMELY loud. Even with that intensity they didn't get a response.
       
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    26. AUTHOR
      AUTHOR
      aura

      aura Member Benefactor Ambassador Hall of Fame

      Location:
      Romania
      Tinnitus Since:
      05/2012
      Cause of Tinnitus:
      Unknown
      It was "designed" for protection indeed, but from what I've read it doesn't help much. It's not something that you can count on when exposing to loud sounds.
      Measuring the AR provides information about the integrity of the middle ear muscles and the ossicular chain, but also about the nervous pathways involved in this reflex.
       
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    27. Kriszti

      Kriszti Member Benefactor Hall of Fame

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      This is my ART result, and I was told that on the left side, I do not have stapedius reflex, but for me it's not that clear, because the lower frequencies and the higher ones look different. Tried to google it, but did not really understand how I should read the results.

      IMG_20200422_202419.jpg
       
    28. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Otosclerosis is a middle ear disease (mainly - there's a "cochlear" variant too).
      I experienced intermittent humming.
       
    29. Kriszti

      Kriszti Member Benefactor Hall of Fame

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      Yes, you are absolutely right, I know that and worded it wrongly. I don't rule it out, but I don't really understand how a fixed stapes would cause low vibrating humming every year for a 2-3 week period (while it is still on/off, one day it's there, the next it's absent.). This has been going on since 2016 (2018 no low sound, 2020 6-month-period of low hum, 2021 up until now no humming.) But I absolutely don't know and none of the ENTs could provide even an educated guess.

      Was yours behaving similarly?
       
    30. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      In terms of coming and going, yes.

      The bizarre thing is that I only noticed it post-stapedotomy. It could have been there pre-stapedotomy too, just covered by the pre-op tinnitus (it used to cover a wider range of frequencies) and thus, not as noticeable.

      Now, there aren't that many tests that you should be going through to get you an idea of otosclerosis likely: Rinne/Weber fork tests, audiogram data (ABG, stapedial reflex), Carhart Notch, Schwarz sign, radiolucencies in CT... I don't know if you've gone through them, but if you haven't, it's a pretty simple next step.
       
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