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Is it possible to get Meniere's Disease After Having Surgery for Removal of a Acoustic Schwannoma

Discussion in 'Your Living Room' started by Cynj, Mar 17, 2021.

  1. Cynj

    Cynj New Member

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    Mar 17, 2021
    Please forgive the length of this post. I am desperate for answers and help.
    I am a 63 year old woman. I had a small vestibular schwannoma removed from my left side on 10/5/2020. Part of the process involved cutting the 8th cranial nerve. The Neurosurgeon said my right side would learn to compensate for the new balance and hearing problems I was experiencing. He said my pain would go away. I have attended 20 sessions of Vestibular Therapy which have helped me compensate. Six months later I feel little progress. Instead other symptoms appeared.
    My daily symptoms are:
    *
    Headaches, on a good day at a level 4 or 5 on pain scale, average is about a 6
    *I have some level of tinnitus and fullness in my left ear, as I write it is about a 6
    *Sensitive to sounds (like traffic or the garbage truck), bright light, and rapid movements like blowing tree branches or someone talking with their hands can make me off balance
    *loss of hearing, 50% on left side and 25% on right side. I find it hard to distinguish words
    *if I move too quickly I can get dizzy
    *brain fog, nothing comes automatically, i am unfocused
    *I get frustrated easy
    *being on a phone or computer for too long will exacerbate the problems

    With a major flare up my symptoms are:
    *All of the above but much worse.
    *Very Disorientated, off balance
    *debilitating dizziness that can last for short periods or all day
    *I break out in cold sweats
    *The pain in my head is excruciating, head feels like a bowling ball
    *The pain will go down the back of my head into my neck
    *tinnitus and fullness increases to a point of thinking my head will explode. the head pain can be very intense, it doesn't happen often but the pain in my head has rolled me into a ball crying
    *my left eye gets blurry
    *The pain goes into my cheek, jaw, and I get a metallic taste in my mouth. This use to be only on the left side but now I swear its traveling to the right side.
    *hearing gets worse
    *a complete loss of coordination, concentration
    *extreme fatigue after I regain calmness

    I swear i now feel my right ear is starting to have tinnitus and fullness.
    I have told the surgeon and my PCP all of this information. I have now been prescribed Gabapentin. The surgeon says he has never had anyone with these symptoms being permanent, I am just taking longer to heal. He is unsure why my right ear/side is not compensating. I am not crazy.

    My mother experienced balance, dizziness and hearing loss issues all her life but was never given any formal diagnosis.

    Can anyone shed light on my opening question and condition?
     
  2. Ledwards

    Ledwards Member

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    Jun 7, 2020
    I’m not sure you can get it after a surgery. Have you had an mri done yet?
     
  3. Cynj

    Cynj New Member

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    Mar 17, 2021
    thank you for your response. I am being scheduled for another. I also have an appointment with a Neurologist who treats vestibular issues.
     
  4. IvanNew

    IvanNew Active Member

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    Jan 18, 2021
    It is highly unlikely and you would be a very unlucky person. The chances of having the misfortune of having two different and complicated diseases in the same organ and almost at the same time are remotely low, but not impossible.

    However when I did not know what I had in my ear I also thought I had a Schwannoma and from what I read:

    1-Produces the same symptoms as Meniere.

    2-Surgery is necessary to remove it and not die, but it does not imply the total recovery of the patient in all his symptoms. That is, you can regain much, little or none of the lost hearing, the tinnitus can disappear, decrease or stay the same, and dizziness and instability as well.

    3-The time of rehabilitation and recovery and improvement in the previous symptoms can be one year or more.

    4-It is almost 99% certain that the dizziness will go away with time (all clinical trials I saw had an almost total cure rate for dizziness and vertigo in the long term), you have about a 50% chance of recovering some hearing (Very rarely do you recover much and very rarely lose much from surgery) and you have an 80% chance that the tinnitus will remain the same or slightly less forever, it is very rare that it will get worse or disappear.

    If you had surgery in May, you should be patient and continue with vestibular rehabilitation, both by going to a professional and with exercises at home that your rehabilitator should give you.
     
  5. June-

    June- Well-Known Member

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    May 12, 2014
    Yes, I answered on the other forum. I was told by my doctors that it is a known phenomenon that surgery for acoustic neuroma in one ear can cause MM in the non operated ear due to the release of sequestered proteins during the surgery in the operated ear.
     
  6. Cynj

    Cynj New Member

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    Mar 17, 2021

    Thank you so much for the reply. This is so frustrating especially since i now swear i am having similar, much milder symptoms, on the right side, the non surgical side.
     
  7. IvanNew

    IvanNew Active Member

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    Jan 18, 2021
    The symptoms on the right side can be the result of stress, however we cannot rule out Meniere of course either. It would be very weird, but not impossible.

    I don't know if it will help, but perhaps for a better recovery of your acoustic nerve taking magnesium, zinc and vitamins will go well.
     
  8. Autumninthefall

    Autumninthefall Active Member

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    Aug 10, 2019
    Yes, apparently it is. I'm so sorry for you suffering. NO, you are not crazy. Many people on this website have felt like they were going crazy at one time or another. You're in good company.

    Secondary Endolymphatic Hydrops (SEH) - VeDA
     

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