Tinnitus Getting Really Bad — Vestibular Schwannoma

Discussion in 'Support' started by Amy Zing, Sep 3, 2015.

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    1. Amy Zing

      Amy Zing Member

      Tinnitus Since:
      All my life
      Hi hi :)

      I am here as I am struggling with my tinnitus at the moment.

      I have a vestibular Schwanomma. I have always had tinnitus, however lately it is becoming insane. I actually think I know why what's his face artist wanted to cut his ear off for!

      I have had radiotherapy (FSR), and that stopped the trigeminal neuralgia - but this bloody thing is still going. Surgery is next step, but my surgeon is giving me a few years reprieve as I will almost certainly get facial palsy and go totally deaf. I mean, I'm kinda deaf already, so that doesn't bother me. And I have no balance - but I mean, ima used to that - I just have to be careful. Not looking forward to facial palsy tho (shallow I know). Anyhow, my tumour can safely get bigger apparently - will need surgery in a few years.

      But this freaking tinnitus is off the hook. I always had the scary movie high pitched stuff. Now though, I have this really ominous bass rumble that is suffusing everything. It is still present - even in a loud movie - background sound doesn't block it out unless really really loud. I am getting distracted when talking with people and I can't hear peoe over the bass rumble. My life has turned into an evil horror movie soundtrack. I like horror movies, but, gah!

      Anyhow - anyone in a similar boat found treatment that works? I take lorazipam and that can sometimes take a slight edge off it but yeah, I feel helpless. Apparently even if they re-section my nerves and cut them out, I will still have tinnitus.

      Is there anything that can work? Anyone been in a similar boat and found relief?

      Thanks! And hi hi :) ima noob and I'm Amy.

      >^.^<
       
      • Hug Hug x 1
    2. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hi Amy ,
      Do you wear hearing aids as they can help and ones that also have a white noise setting also can help ?
      Hope your tumour is slow growing and regular MRI can monitor it.
      The middle ear houses the facial nerve so thats why their is a risk .
      My son has had two ear operation's and his face is fine so try not to worry....lol glynis
       
    3. Amy Zing

      Amy Zing Member

      Tinnitus Since:
      All my life
      Hi Glynis. Thanks for the reply. Yeah, tumour is slow growing, so good on that front. My neurosurgeon told me i will almost certainly loose some face as I have had radiotherapy already which makes surgery difficult.

      I do have hearing aids. They have little bell sounds which work on the top frequencies - they are the one's I've become accustomed to tho - I mean, always there but I can block them out. Hopefully will be able to block out the bass. It is quite new - only been getting worse over the last month or two. It seems so loud, and I guess I am scared because of my tumour and get anxious so it gets worse lol!

      I had an MRI two months ago, and the tumour is growing slowly. Yeah, am on regular monitoring.

      Wondered if any of these drugs people talk about here could help - bit scared of epilepsy medication tho.
       
    4. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hi Amy ,
      Im not aware of any tablets out yet but lets hope the new trials prove positive .
      My husband and both sons have epilepsy and on medication for it so im not worried about the medication for it.
      Im on lots of medication already with health issues with Menieres,bilateral tinntus and severe asthmatic under the severe asthma unit .

      Our hospital is one doing the tinnitus trials and we had two of their nurses come to our tinnitus group I run with another lady to talk about the trial....lol gynis.

      Stay positive .....
       
    5. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Your neurosurgeon is waiting until the tumor gets big enough ... and in the mean time you have to endure tinnitus that gets progressively louder? That sucks.
      And if it gets large enough and start causing facial issues and other stuff...? Shouldn't such tumors be removed as soon as possible? I am no doctor, just curious.
       
    6. Amy Zing

      Amy Zing Member

      Tinnitus Since:
      All my life
      I know - sounds backwards. The tumour is slow growing and not malignant. The surgery is what will cause the palsy - it can get to twice the size apparently and will still be fine - surgery will be no different. It is just about preserving quality of life for a few years. And the surgery won't stop tinnitus - it may make it worse.
       

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