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Newb - Trying to figure this out

Discussion in 'Your Living Room' started by sleestak, Aug 10, 2021.

  1. sleestak

    sleestak New Member

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    Aug 10, 2021
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    Hello to you all, I am a new member to the boards and thought I would say, "Hello" and share my situation with whoever cares to read it. I'm currently floating somewhere between SSCD and Meneire's and trying to find my direction. In my searches, this site came up and I found some useful things thus far, so I figured I would join up and take the ride.

    I'm a 47 and have been having problems with my right ear for a number of years now. Only these past 6mo have I been seeing a Neurotology Specialist because of dizziness and vertigo....but let me start from the beginning.

    About 8yrs ago - I got tinnitus in my right ear. Constant, steady, never-ceasing.

    6yrs ago - I went to my primary due to fullness in my ear, loss of hearing. There was fluid in my ear and I was prescribed meds to clear things up. The fluid cleared, but my hearing started getting wonky and by the time I got an MRI (showed nothing) and to an ENT, I had lost 60% of my hearing and was given an aid.

    5yrs ago - Complete hearing loss in that right ear.

    Just under 1yr ago - Woke up to lightheaded/dizziness that persisted for days. Turning my head towards my right gave a weird sensation, like my brain was a second behind the motion. Was back to the ENT for BPPV and when nothing worked, sent to vestibular therapy.

    Vestibular therapist tried a number of tests showing slight loss of balance and eventually ordered a CT scan when I mentioned my dog barking started aggrevating my symptoms. I was found to be bi-lateral SSCD. Great, now I thought I had something to work with....off to the specialist who gave me a VEMP test that showed nothing for sound sensitivity at the time.

    Last Week - during my recent follow up with the specialist, I mentioned that my dizziness has increased. I am effected by the weather and dizziness can last weeks at varying degrees with episodes of vertigo sprinkled in. Vertigo will last 20min - a few hours, till I get it calmed down and then I am very dizzy for a while. During these periods, my balance can get wonky - I'll swerve a little while walking down the hall.

    Now the specialist believes my symptoms are caused by Meniere's and that the SSCD is playing very little part in it all. He told me I could try to manage or we could do a labyrinthectomy, since I am already completely deaf in that ear, and I'll get a cochlear to boot.

    Since SSCD and Meniere's share the same symptoms, I am trying to be sure of his diagnosis because I might actually entertain just getting this over with and doing the surgery and getting back to life and hearing....hence my visit here to learn more.

    Thanks for reading all this and to any and all who contribute their experiences and knowledge here on these boards.
     
  2. Brian

    Brian Member

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    Jun 20, 2021
    This is way beyond my pay grade. How sudden was your hearing loss?
     
  3. sleestak

    sleestak New Member

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    Aug 10, 2021
    Colorado
    Lost 60% within 3wks and the rest a year later.

    Yeah, I’m a complicated case.
     
  4. Jimii

    Jimii Member

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    Apr 10, 2019
    I had never heard of SSCD. Thanks for sharing. Something new to research and ask my Dr. about.
    Thanks
    Jim
     
  5. jose suarez

    jose suarez Member

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    Nov 2, 2020
    Thats really sad. Hope you feel better now
     
  6. Punture

    Punture Member

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    Sep 4, 2021
    Any update on what you decided to do?
     
  7. jose suarez

    jose suarez Member

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    Nov 2, 2020
    Before i got the mernier diagnosis my doctor verify if i got sscd That is a defect of the bone inside the ear. Also i hear from my Ent that mernier patients loss hearing every time we got an episode of vertigo. So for me that means if we control the episode we should not loose hearing. Correct me if im wrong
     
  8. IvanNew

    IvanNew Active Member

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    Jan 18, 2021
    SSCD: Produces imbalance. Without vertigo.
    Meniere: Produces vertigo attacks, at least 2 a year approx.

    On trying things out before trying surgery:
    -Antivirals or / and JOH regimen.

    Search the forum database for more information.

    Good luck!
     
  9. Cheryl

    Cheryl Active Member

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    May 23, 2014
    IvanNew, It's my understanding that SSCD can, indeed, cause vertigo along with imbalance. It can also produce oscillopsia which is a feeling that things are moving when they are not.
     

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