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Labyrinthectomy surgery

Discussion in 'Your Living Room' started by Dhorsinround, Nov 22, 2017.

  1. tornadito68

    tornadito68 Member

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    Thank you June
     
  2. tdoak

    tdoak Member

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    Are there any members, or members who of someone who had relatively good hearing in their affected ear and had the labby procedure?
     
  3. Bulldogs

    Bulldogs Well-Known Member

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    me!!!

    I was willing to be deaf (sacrifice my hearing) in my laby ear even though i still had relatively good hearing in that ear.

    What i was not willing to do do is live my life in fear, with my head in a bucket barfing at a moments notice, afraid to socialize, anxiety of my next attack ect.......

    It was a trade off i would make any day of the week, especially after Dr. Rauch and Dr. Mattox told me it is quite common today to put a Cochlear Implant in a laby ear if it is ever needed. I think now they do the laby where they leave the Cochlea/Snail portion of the ear in there in case they need to use it at a later date.

    I acually hear better being deaf in one ear as i don't get the pressure, hypercusis, hissing tinnitus 24/7 ect.....Direction of sound can be an issue but hearing and communicating is so much better for me without my diseased ear.
     
  4. tdoak

    tdoak Member

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    Ok. I did not realize you still had relatively good hearing when you had the labby.

    My other fear is that I am becoming bi lateral, which really complicates things related to a labby.
     
  5. Pupper

    Pupper Active Member

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    Damn Bulldogs, every time I read what you say about your laby I want one!
     
  6. I agree with all of this...I was like this too, 100% for the first 3-4 months after my labyrinthectomy? Unfortunately, all of those bad things seemingly returned in that ear because I developed scar tissue as a result of the surgery. *note, I’m an outlier, as I haven’t seen anyone else on the board mention scar tissue being an issue* since it stopped my drop attacks, I’d have the labyrinthectomy again in a heartbeat.
     
  7. tdoak

    tdoak Member

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    How was your hearing before the labby Autumninthefall?
     
  8. sjw111

    sjw111 Member

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    You will be fine. Dizzy when you wake up. Probably barf. But in a very short time....days. The other ear will totally compensate and you will have your life back. Best decision I ever made. If you have tried all medical management and are still having spins or even worse drops....then this is the fix. You CANNOT have a spin attack if the offending ear is killed. Also they are much more careful to just remove the vestibular organ now. And preserve the cochlear if you ever want an implant. Yes, bone mass does begin to grow in that area after the laby....but Ci not out of the question. Labys are 100% successful for stopping spin vertigo attacks. Good luck. Be a little patient after the surgery. But in weeks or months you will wonder why you suffered so long and not done this before. The board will miss you. Because once done you are free. And won't be back here.
     
  9. tdoak

    tdoak Member

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    You certainly make the labby sound like the way to go. But, if I am bilateral it may not stop all spins.
     
  10. June-

    June- Well-Known Member

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    ^^You have to know the answer to that and whether migraine is invoved first. Also, try antivirals if you have not.
     
  11. tdoak

    tdoak Member

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    I have been on antivirals for over a year, brand name Valtrex, full dose. I also following the migraine diet. I still have symptoms, but not brain fog anymore.
     
  12. Bulldogs

    Bulldogs Well-Known Member

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    The truth of the matter is there is an awful lot of misinformation on this forum and other forums about mm. My advice would be to throw everything you can at it and if all the alternative treatments fail and you are still dealing with the horrific effects of mm including both the physical and mental aspects/anxiety/depression ect.. of mm then you should take the necessary steps to get your life back. Hope is not a treatment plan.

    My Biggest/Best Recommendation is to go to the best teaching hospital you can for your treatment. I traveled the country looking for opinions and treatment from West Coast to East Coast and everything in between for 2 years.

    I Recommend:
    Dr. Rauch at MEEI (Mass. eye and ear institute) / Harvard
    Dr. Douglas Mattox Emory University

    They have seen the worst of the worst cases of mm and they are also two of the very best surgeons in the world if it comes to that. I will never forget Dr. Rauch telling me he has many many patients who have zero function in both ears and live quite normal lives and use a Cochlear Implant for hearing. Dr. Mattox explaining to me that we have 3 different balance systems and only need two to of them to be productive and normal.

    the truth of the matter is there is also many members of this forum who have zero function in both ears and use Cochlear Implants to hear that live quite normal lives including one that practices medicine and others who are financial planners and one who is the president of a bank.

    they don't come around much if ever anymore because they are out living their lives enjoying family, traveling ect....

    I cannot recommend enough to get to the best doctors in the world and let them establish a treatment plan whether you are unilateral or bilateral.

    I recommend
    Dr. Rauch
    Dr. Mattox
     
  13. Bulldogs

    Bulldogs Well-Known Member

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    Here is a link to an article that everybody should read about a Doctor Living without Vestibular Function in Both ears.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC505972/pdf/brjopthal00391-0009.pdf
     
  14. Bulldogs

    Bulldogs Well-Known Member

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    Now ask yourself is his life better than yours? As we worry about bilateral mm, anxiety, depression, social anxieties, afraid to leave the house because of an attack ect........


    In my opinion.....I'll take his life any day and use a Cochlear Implant to hear.
     
  15. jkc

    jkc Member

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    I agree Bulldogs but what if you are bilateral already will these Doctors operate ? I am Atypical no vertigo but if I develop it I want it gone but am told it is bilateral and every Dr. I have seen says they won't operate on someone who is bilateral.
     
  16. tdoak

    tdoak Member

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    Do we know of any members on here who have had a labby in ear ear?
     
  17. June-

    June- Well-Known Member

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    I am deaf/no balance in one ear and have cochlear hydrops in the other. Surgeons were very reluctant to operate. I am glad because i had remission of my symptoms from antivirals and allergy treatment and saved my hearing and balance for these past 9 years.
     
  18. Dhorsinround

    Dhorsinround New Member

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    Good evening every one , i went for my preop for the lamby surgery last Thursday. And when my doc came in the room he asked if i had any questions ?i told him we needed to talk ... as i wanted make sure we were doing the correct ear because i have been hearing ringing and other issues in my good ear. He was rather surprised with this and was pretty sure it was my bad ear .i was sent for hearing test ,pressure test ect . And the one test i dread the most is the balance test . Makes me so very sick but it was the only definativecway to tell if i had MM in the good ear . He told me and my husband there was only a 1% chance it could go to the other war but to make 100% sure the balance test was done . Fun Fun!!!! NOT i tried 2 times to cancel and get out of it. Well after test were done . I am now bilateral and surgery has been rescheduled and Put on antivirals have to go back in 10 days he pulled me from work and told me he highly suggest i go get on disability . Ster we decide what ear if eaither one will have surgery , his office will get all my paperwork together for disabilty.
     
  19. scott tom

    scott tom Active Member

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    What an idiot doctor. It's a good thing you spoke up!

    The odds of going bilateral are closer to 20%.
     
  20. Dhorsinround

    Dhorsinround New Member

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    I am sorry you feel that way , unfortunately you do not know my history from thelast 40 years and the history of thelast 20 something years with him. He and his father Richard and Mark Gacek . I use Mark Gacek and trust him completely but i also know my body as well . He did the tests that were needed, after my concern . and by the way there is only one God doctors are not God they know what they are taught and actually i feel like this. Everyone is different with this horrible thing . Doctors are not perfect and as far as i am concerned they learn as well ,no matter how long they have been in the proffession. Walk a mile in my footsteps and one may can judge !
     

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