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Destructive treatment for bilateral

Discussion in 'Your Living Room' started by Woodsrider, Feb 20, 2020.

  1. Woodsrider

    Woodsrider New Member

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    Apr 16, 2017
    When I was first diagnosed with mm back in 1995 I was always told it will burn out in about ten years. Well that was a joke. Four doctors later I’m now at the Michigan ear institute which is supposed to be the best in the area. I have had the sac surgery twice on the left and once on the right. I have no hearing left on the left side and 89 percent in the right. I don’t get the long vertigo spells anymore but I have frequent 30-60 second spells. When they occur if I’m not sitting they will bring me to my knees very fast. Then they go away and I’m fine. To me it feels like my brain is being shocked. 90 percent of my problems have come from my left ear which rings loud all day everyday also. I have tried joh,antivirals I’m on betahistine and water pill. Last visit doctor suggested possibly doing gent injections in my left ear. I’m hesitant because I’m bilateral. But after all these years I’m getting tired of it. Any one here that is bilateral have a destructive procedure on one one of yours? Also if I have no hearing would a laby be a better way to go instead of the injections? Any help would be appreciated.
     
  2. Kevinb003

    Kevinb003 Member

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    I had a labyrinthectomy prior to going bilateral and now have a cochlear implant in that same ear. Don’t regret the laby one bit—gave me my life back from debilitating vertigo. BTW, I went to the Michigan Ear Institute years ago when I was first diagnosed—it is the best in that area imho (I live in Texas now). Best of luck and happy to answer any questions you might have!
     
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  3. Rebecca

    Rebecca Member

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    Jan 19, 2019
    Kevin, what symptoms still remain in the laby ear? Do you still get fullness, brain fog, etc.? I haven't had really bad vertigo for several years. But, a year ago started having a LOT of fullness, pressure, disequilibrium, brain fog, feeling really weird in the head, and the tinnitus is worse again, and now in the other ear, too. So, is vertigo the only symptom the laby will alleviate? Thanks. BTW, my brother had a cochlear implant about 3 months ago. He is slowly beginning to recognize sounds as words in that ear. But, but it's a process. How are you doing with yours?
     
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  4. Woodsrider

    Woodsrider New Member

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    I really appreciate the feedback. This gives me some hope. It would be life changing if I could live without the fear of a vertigo attack.
     
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  5. Kevinb003

    Kevinb003 Member

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    @Rebecca, the laby gets rid of the fullness also because it destroys the anatomy that causes it. The only symptom I still have in that ear is tinnitus, which is actually caused by the brain. That is slowly getting better, though, as the implant creates the missing stimulation for the brain that normal hearing used to provide. I am a little more than 2 months post activation of my implant and things are progressing well...it’s not for the impatient as progress is slow, but the progress is there. I have a thread on this site, which details my experiences with the implant if you are interested. Best of luck, Kevin
     
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  6. Rebecca

    Rebecca Member

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    Thank you so much Kevin. I truly appreciate your reply. This disease has been in my life for 20 years. First couple years were horrible. Could not drive, work, and didn't want to leave the house. Very depressed. Extremely low sodium diet, water pill, etc., etc., and gradually things got a little better. I was able to return to work, and even though the symptoms, other than the horrible vertigo, continued. I could enjoy my family and do things. A year ago, it decided to take up residence again. The horrible vertigo has not returned, thank heavens. But I've added continual disequilibrium, brain fog, many headaches, (which might be from the meds??), and even though I can't hear in the MM ear, it's extremely sensitive to sounds. And, I now have tinnitus in the other ear, and losing hearing pretty bad. I've worn a hearing aid in the none MM ear for years. But, hearing is worse these last several months. I am scheduled for new hearing test, CT scan, and VNG testing, (not looking forward to that one), in a couple weeks at Loma Linda University Otolaryngology Clinic, with a follow up visit with a specialist. After years of this crud, and then this last year going more South, my ENT referred me. At first I had little hope they would be able to provide any answers or help. But, your post makes me think there MIGHT be some relief. I have no idea if I will qualify for a laby, but, I appreciate your input. Maybe, too, an implant will be an option before my left ear goes completely deaf. .. I sincerely hope your implant will eventually bring you even more of a normal life!! I'm excited for my brother, as well. Another question I have, please. What was the process after your laby, and how long before you could go places, drive, and work, (if you're still working)? I'm in a position where I really rely on my job. Thank you!!
     
  7. Kevinb003

    Kevinb003 Member

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    @Rebecca, it’s been almost 7 years since my laby so I’m not completely sure on time frames. I did have a complication of a cerebral spinal fluid leak so my Oto had to go back in and fix that. It was a while before I could drive again, fortunately my employer was ok with me working from home for a while. What I do remember time wise is that the laby was May 13th and I bought a new car at the end of July to celebrate that I could drive again,lol. For whatever that’s worth, I hope it helps. I was having drop attacks so the laby was a no-brainer decision for me. Happy to answer any questions you may have. Best of luck! —Kevin
     
  8. Rebecca

    Rebecca Member

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    Jan 19, 2019
    Thank you Kevin.
     
  9. Autumninthefall

    Autumninthefall Member

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    Like Kevin, I was forced into the laby due to drop attacks. I had a BAHA implanted at the same time. I wish I’d gone the cochlear implant route! I had complications after my surgery(staph infection, scar tissue) still don’t regret it~drop attacks gone!
    Due to my specific complications I’m still trying to, “recover.” My surgery was in the end of 2016 and my brain still gets exhausted way too easily, I can’t drive yet, and I’m doing vestibular therapy now. There are several people on the site that have had phenomenal outcomes with their laby, however, so don’t get scared off. Remember, people on a support forum are either here to provide encouragement or receive it when needed, so of course you’ll find more negative outcomes being discussed by default.
     
  10. redwing1951

    redwing1951 Well-Known Member

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    I also chose a laby because of drop attacks. Drop attacks are life threatening so as Kevin said it was a no brainier.
    My recovery was quick. One overnight in the hospital. At home the biggest surprise for me was having double vision in the mornings. I hadn't heard of anyone discussing double vision as a possible side affect so it made me anxious. Once I researched it I felt better. The double vision only lasted about a week. I started walking outside immediately. I walked 3 times a day. Walking is the best thing you can do to train your brain to a single vestibular system. I was able to drive 3 weeks after the surgery. I consider myself as being very fortunate that the surgery went so well for me. My OTO told me that the goal to a laby is ending vertigo. If you are fortunate to get rid of fullness and tinnitus then "it's icing on the cake". I still have tinnitus but it's not anything that keeps me from doing things I want to do. I have to pick and choose where I sit in a group discussion and at restaurants. I don't know where sounds come from but again it doesn't keep me from being active. I thank God every day for the surgery. I am able to live a normal active life.
     
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  11. Mustang1

    Mustang1 New Member

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    I too had a drop attack plus many vertigo episodes a year ago, last May I decided for the laby and on Aug. 20 the surgery was performed in Albany, NY. Now 6 months later I am back doing my work, bowling and joined a co-ed volleyball league and having a great time. My bowling average took a big hit as the laby effects my balance as I release the ball but having no vertigo is a blessing. Walking as much as you can after the surgery helps greatly in getting back to a normal life. Its all good.
     
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