Otosclerosis or ETD... Or Anything Else? Both? Help!

Discussion in 'Support' started by new2this, Aug 15, 2016.

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    1. new2this

      new2this Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      otosclerosis? not sure
      Hey everyone,

      I have had weird ear problems for 1 year now. I have had general health issues (reflux, rhinitis, etc) for 3 years now, ever since having had a nose job which left me with a severely deviated septum.

      Last summer, I was getting dressed for the day when my ear (cant remember which anymore) went CRAZY. All sounds were muffled, peoples voices were vibrating and sounding like robots, and a TERRIBLE ringing. I put my clothes on and rushed to the doctors who gave me antibiotics for swimmers ear and it left almost immediately. Came back a few weeks later after a pool party, so i used it again and felt immediate relief.

      Fast fwd to this summer, in March. MOST. ITCHY. EARS. EVER! I couldn't even sleep cos I would want to scratch my ear out (ear canal). I would wake up to the worst itch and with a bit of fluid. This persisted until now. However, things got worse 2 weeks ago. I experienced on and off tinnitus in my RIGHT ear that I could hear when I slept, until one night it just stayed. Never left. Went to the ENT quickly after and he said it's probably otosclerosis because I have some hearing loss in my LEFT ear (still within normal, just borderline). I also lost a bit of my high pitched frequencies in BOTH ears. Because of the popping/crackle when I swallow, the itchiness, and the sudden onset of ALL these weird ear symptoms that dont particularly match with otosclerosis, I'm starting to think there might be something more. I went to my GP at the same time as the ENT, and she gave me antihistamines and nasonex for those two weeks. It feels like it got better, however the ringing is still there, the itch is still there, and the crackling.. still there. Just not as bad as it was.


      If this is otosclerosis, could someone with otosclerosis tell me if they've experienced the same ODD symptoms that kind of go against the common symptoms for otosclerosis? Or if this could maybe be something else?

      I dont know if I trust this ENT specialist. He didn't even ask my symptoms and just determined its otosclerosis because of the hearing loss in the LEFT ear (despite ringing being in right) and shrugged me off in 5 minutes.

      Im 24 yr old Female, no family history of otosclerosis, btw.
       
    2. new2this

      new2this Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      otosclerosis? not sure
      BTW, i also am having a terrible outbreak of sebborhea on my head which spread a bit to my face this year. it is also on the outsides of my ear I assume because the skin there is always flaking off. It is a fungus. I had suspicions that it could be causing the itchiness in my ear but am not sure.
       
    3. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Get it properly checked. Otosclerosis is often hereditary, but not always (ask me how I know).
      The following tests are usually done to come to a diagnosis:
      - tuning fork -> check lateralization
      - audiogram -> check conductive losses (air-bone gap)
      - CT scan -> check bone demineralization or active foci

      It can come with horrible T (again, ask me how I know), often in the low frequencies, but not always.
      If you are unlucky, if can attack your inner ear in addition to your middle ear (and again, ask me how I know). If that's the case you can have a mixed type of hearing loss (sensorineural + conductive), and bad tinnitus.

      Try to catch it early. There are things you can try to attempt to arrest its progression. So get a diagnosis soon (or rule it out, if you're lucky!).
       
    4. new2this

      new2this Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      otosclerosis? not sure
      He told me I had done all the tests I needed to do since I went to get my hearing tested prior to the appointment (I know they put me in the sound booth, repeated words, checked my pressure and nerves which were all normal apart from the hearing), I didn't know about audiogram. I should have asked if it was done. He also told me a CT scan won't help and the only way I could determine if it is 100% is with a biopsy through surgery. I feel like I have no lead.

      EDIT: audiogram just lets you know which frequencies you have trouble with right? I learned that both my ears cant pick up on the high pitch frequencies. The rest is ok. Left ear is just overall lower on hearing though.
       
    5. new2this

      new2this Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      otosclerosis? not sure
      I really wonder how my right ear is the one ringing but has no signs of hearing loss and my left ear has hearing loss, apparently, yet is fine. I just wish I had answers.
       
    6. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      The audiogram is the document you are supposed to get out of the sound booth session you underwent.
      From that document you should see if you have conductive losses.

      I think he's glossing over details there. It is true that you can only confirm a diagnosis through exploratory surgery, but you typically don't go through exploratory surgery (they go through your eardrum - it's fairly invasive) unless you have a strong suspicion that you have otosclerosis.
      CT scan can provide you with that suspicion (there are areas of translucency that can be seen on CT), along with the other tests I mentioned.

      Otosclerosis typically presents losses in the low frequencies.
       
    7. Enrique
      Dreaming

      Enrique Member

      Location:
      San Diego, California
      Tinnitus Since:
      05/20/2014
      What things can you do to slow the progression of otosclerosis?
       
    8. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      The options I know of (none of these are guaranteed, but they have a chance of helping):
      1. stapedotomy (the surgery)
      2. fluoride
      3. bisphosphonates
      #2 and #3 are mutually exclusive. I think you either try one or the other. Traditionally it's been fluoride, but recent developments are pretty positive about third generation bisphosphonates. They are meant to try to stop the bone remodeling process that is happening in your ear.
       
    9. Enrique
      Dreaming

      Enrique Member

      Location:
      San Diego, California
      Tinnitus Since:
      05/20/2014
      Great! I've read a bit about it. I have otosclerosis but it is still somewhat in the early stage (-30db conductive loss in the lower frequencies). Any brand recommendation on brands for the fluoride or bisphosphonates?
       
    10. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      This is what I take. Talk to your doctor about dosage. I take 2 pills in the morning and 2 at night. Some people don't tolerate it well.
       
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