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Looking for Feedback - interm step before laby

Discussion in 'Your Living Room' started by tdoak, Oct 14, 2018.

  1. tdoak

    tdoak Member

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    Hello members,

    Looking for information. For those members who have had any form of surgery to manage their menieres symptoms, i.e. Mastoidectomy, Endolymphatic Sac Decompression (with or without a shunt), VNS, or laby, etc, and symptoms returned. Did you try gentamicin injections next? If so, how was the experience?

    I had the Endolymphatic Sac Decompression surgery last April and now 6 months later my bad symptoms are coming back. I had the surgery due to a drop attack last November and broke my neck. I required emergency surgery and was very lucky not to be paralyzed. There are prior posts about my experiences.

    I am strongly considering gentamicin injections this week to try and stop the full rotational vertigo or drop attacks from returning. I will be moving to a labby but that surgery will probably not be for 4 to 5 months from now. I need to do something in the interim. One of the signs the gentamicin is working is that it will cause vertigo as it destroys the balance nerve from sending faculty signals to the brain. So, was the vertigo strong? As bad as it was before your surgery? Any warning it was coming? How long did the vertigo last? Any feedback would be appreciated. Thank you.
     
  2. dwaynehoover

    dwaynehoover Member

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    Do you still have hearing in the bad ear? A little bit or quite a bit of hearing? Thanks and good luck to you
     
  3. tdoak

    tdoak Member

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    I still have about 50 percent hearing in my bad ear. But I am willing to sacrifice that if need be.
     
  4. Mac

    Mac Active Member

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    I had the endolymphatic shunt shunt and decompression surgery in 2016. I was 37 years old. Dying for relief. Had a 2 year old and one on the way.

    Was promised 80 percent success rate by the "top doc" in NYC.

    Long story short it didn't work. In fact things got worse. My hearing got much worse. My balance got much worse. Had severe vertigo within weeks of the surgery. Started heavy antivirals 11/2017 and things have calmed down. Not even close to perfect...but manageable.


    I know your story with the broken neck. I feel terrible for you. If your "good ear" is almost perfect I would strongly consider a labby if the vertigo returns.

    Good luck with everything.
     
  5. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    With 50% hearing left, that's a hard choice to make. I was pretty much in the same boat. Normally I'd go as conservative as possible, but FOR ME, I was really at a point of desperation with twice-daily vertigo attacks lasting several hours each. I had many discussions with my neurotologist (as well as my husband, also an ENT). We decided to skip the shots. My doc was pretty convinced they might do a *bit* of good but ultimately I'd end up back in a few months for a laby anyway. I was at the point where I needed for it to be over. I was pretty much house-bound and the anxiety of when the next attack would be, was hard to bear. The shots...while they MAY have preserved some of my hearing on that side, would not have taken away the reality of vertigo attacks. Sure they may have made them less severe, but it likely wouldn't have changed the reality of the restrictions of my life, and my ability to work and take care of my kids' needs. I share this just to let you know what my thought process was. I didn't go that route because I didn't want to prolong what was probably the inevitable. Now, if there's a reason you have to wait many months for the laby, then that kinda changes things and I might consider the shots, if I were in your shoes.

    I hope one way or another, you are able to find long-term relief very soon.
     
  6. tdoak

    tdoak Member

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    Thanks for the feedback. It will probably take 6 months to schedule the laby, and I would get a co implant at the same time. I am in Canada, so there will be no expense to me, but I have to wait and be scheduled in.
     
  7. Clare

    Clare Active Member

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    You are fortunate to be getting a cochlear implant with your laby. In the US it isn't covered for adults with single-sided deafness, so we are stuck with an inferior prosthetic or may choose none at all.
     
  8. tdoak

    tdoak Member

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    I have hearing loss in my non affected ear, normal hearing loss, but makes me qualify for the implant.
     
  9. AnneT

    AnneT Active Member

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    I’m resurrecting this thread as I have a similar question.

    So far, my hearing loss (now profound) and vestibular loss (more than 50% gone) are all on my right side.

    I’ll see an otologist here in Calgary May 21. (Our only neuro otologist, Beth Lange,just went on extended medical leave.) She can do gentamicin shots, but I don’t know yet the timeframe on that.

    Another ENT, Dr. Phil Park, can do a labyrinthectomy. When I saw him years ago, when the diagnosis was unclear, I had to wait 9 months to get in to see him to rule out acoustic neuroma (mri normal).

    I suspect that I’ll be encouraged to jump through the gentamicin hoop, and see how that goes. The questions running around my head, that maybe some of you fine Menierians can weigh in on:

    1. With drop attacks now being part of my Menieres, will gentamicin be enough to allow me to drive? How will I know?

    2. Should I go to my family doc to get a referral to get in line for Dr Park, or allow the process to unfold?

    3. Do those of you who have gone through gent and laby - do you wish you’d skipped the gentamicin, and gone straight to laby?
     
  10. redwing1951

    redwing1951 Well-Known Member

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    AnneT drop attacks as you know are life threatening. You absolutely should not be driving. I am not sure if gent shots would end your drop attacks. I do know that a laby will end vertigo and drop attacks. If I had it to do over again I would skip the gent and go directly for the laby. Gent made me feel like I was floating on water every day. It did stop vertigo for about 8 months. The overall feeling like crap and the anxiety of not knowing when my next drop attacks would appear helped me to forgo another gent and schedule the laby.
    I think it wouldn't hurt to get in line to see Dr. Park. I hope you are able to get to see him sooner than later. Best of luck to you.
     
  11. June-

    June- Well-Known Member

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    In my experience, the worst thing about losing hearing in one ear (if the other ear has very good hearing) is you lose the ability to echo locate. You dont know where that siren you hear is coming from. What kind of job you have may determine the impact. For me, i wish i could echolocate but not a huge deal.

    Also, ask if you will be eligible for a cochlear implant in the laby ear down the road if the need arises. Depends on how the op is done in your case. Do not rely on a general answer from others or the web. Good luck!
     
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  12. AnneT

    AnneT Active Member

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    Redwing,
    that’s my gut feeling too. And the system here is moving so slowly, once I’m in I want something real DONE. Otherwise, if it goes silent for more than a year, and recurs, I’ll be back on the bottom of the referral heap again.

    June
    Yes, I’ve already lost my echolocation and it sucks! I’ve trained my family members... when I call out “where are you?” that “right here” is useless to me. Tell me what room you’re in! Lol. So I don’t think I’d be losing much. Even without destructive procedures, my audiologist figures my next visit we will be moving from a regular hearing aid to the one that loops from the deaf side to the hearing side.

    Regarding work...
    I stopped working as a family doc due the magical mix of MM, CFS and rising artistic urges. With the drop attacks, i e dropped out of art school - that’s the lovely thing I’d like to get back to. And just the freedom to drive. I don’t tolerate transit well.

    I’ll add the CI question to my ever growing list.

    Thanks guys!
     
  13. AnneT

    AnneT Active Member

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    PS I’ve felt like I’m floating on water, or on a boat, for a few years now, some days worse than others. Always worse before and after vertigo attacks. So who knows how gent or laby will affect that.
     
  14. June-

    June- Well-Known Member

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    Do you think you could train my husband to not answer ‘where are you’ with ‘in the room’? Its only been 22 years now

    Good luck going forward!
     
  15. redwing1951

    redwing1951 Well-Known Member

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    My experience with the laby....except for asking people "where is that noise coming from" or what June said above I live a very active, normal (whatever normal is?) life! I hope the same for you Anne if you go the laby route. Many folks on this forum who have had the laby are very thankful they did.
     
  16. AnneT

    AnneT Active Member

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    June - haha! I guess after 22 years you have to settle for doing the follow up question “which room?” Lol

    Redwing and June thanks for the well wishes
     
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