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Best options for bilateral meniere's?

Discussion in 'Your Living Room' started by Cricket, Apr 2, 2018.

  1. Cricket

    Cricket Member

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    Hi,

    Has anyone gone bilateral and then opted for a destructive surgery? Mine started on the right 9 years ago and then I was diagnosed bilateral about 2 years ago. I've tried a diuretic, betahistine, oral prednisone, antivirals, humira, simponi, steroid shots in the worse ear, cut out caffeine, chocolate, alcohol and keep to under 1500mg sodium/day.

    My hearing fluctuates a lot in my better ear, but has been nearly as bad as my worse ear over the last three weeks, with daily imbalance,dizziness and vertigo nearly every other day. I usually take a valium or clonazepam to sleep off the vertigo, and have thankfully not been acutely nauseous since I use some cannabis in the evenings. I don't feel safe to drive most days and have headaches (yes, I have cut out some know migraine trigger foods) often.

    The last time I saw my ENT he suggested Gentamicin injections as a possible next step or even a Labyrinthectomy with cochlear implants, but didn't sound too sure on what side to work on first (leaning towards the better ear on the theory that the better ear is causing the most problems). And hasn't given me a clear, definitive explanation on how well I could walk, hear, read, drive etc... after such measures.

    Maybe I need a second opinion, but that would be difficult since I already have to be driven 1.5 hours to see my current ENT, the next largest city is 6 hours away, and I can't make it there on my own.

    I also wonder if I will really be in better condition after a series of Gent shots, as this would lower my balance function further. Yet, now I don't feel well most days and have very limited abilities, not be able to drive or hear, walk my dogs, do much housework most days, or even go out of the house... It feels like the darkness is closing in.

    Any suggestions?
     
  2. jkc

    jkc Member

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    If possible i would got to Boston and see Dr. Rauch. Contact Bulldogs on this forum he may be able to point you in right direction. Good Luck.
     
  3. June-

    June- Well-Known Member

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    Where do you live? Yes, when something impacts your life this much, you deserve a second opinion.
     
  4. Clare

    Clare Active Member

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    Circket, I'm glad you posted this question, and I'm sorry to hear what you're going through. I have the same question too. My doctor has not diagnosed bilateral MD but brought it up as a consideration at my last visit. Previously she was going to recommend destructive surgery on my bad ear, but because of the bilateral concern thought that gentamicin might be a better option. Her thought was that gent could be given in only as many doses (low and far apart) as needed to treat the vertigo, hopefully retaining a bit of balance function in the bad ear in case the better ear declines. It would be accompanied by vestibular therapy for a few months to retrain the brain to rely on the better ear for balance function. A labyrinthectomy removes all balance function completely; I think it's the same with vestibular nerve section, but you might check Pupper's posts for more info on that.

    Prior to the discussion of options, my ENT had me do a VNG test to see how much balance function was being provided by each ear. That seems like a prudent approach before doing anything destructive, to understand how much balance ability you may have afterward depending on which ear gets the treatment.

    Part of the VNG is caloric testing with warm and cold water or air used to stimulate a reaction while they measure eye movements. I think adverse events are very rare, but when the audiologist did the warm water, it punctured my eardrum, which got infected a few hours later. I also lost all hearing -- "fortunately" it was not very usable in that ear anyway -- and have had multiple vertigo episodes a day along with constant imbalance. It sucks being unable to drive or even do minor tasks of housekeeping, as you well know. Long story short, my advice would be to have the VNG, but opt for air rather than water calorics, if you have a choice and the data will be as useful.

    Good luck, and hang in there. You're not alone.
     
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  5. Cricket

    Cricket Member

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    Clare, Thank you for your post. I did have a VNG test almost 2 years ago, before I was diagnosed bilateral. So, on my next visit I will ask about that, and the possibility of air instead of water. Sorry to hear about your bad experience with the water treatment, and I hope you can have the clinic compensate you at least for your expenses.

    Yes, I think Gentamicin is the best option in my case. My ENT doen't think the Endolyphatic Sac Decompression isn't effective long term, and the Laby would destroy any balance and hearing, leaving me with only one weakened side and my eyes to balance. Yet, I am hopeful that this is just another cluster of bad days, as I usually recover back to a better situation, but this has been longer than normal for me. I view the destructive treatments as a last resort, especially since going bilateral is a very real possibility and the unknown effects on balance worrisome.

    Best of luck to you and everyone. Keep us posted if possible.
     
  6. ckdk

    ckdk Member

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    hi, how do you know if it's started to go to the good ear? what symptom does it start with? .

    lately, sometimes i felt tinnitus on my good ear but I'm not sure whether it came from my bad ear that is loud lately. fortunately the audiogram in my good ear is still normal.

    thanks
     
  7. June-

    June- Well-Known Member

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    Antivirals might work on the new ear where they didnt work on the established case in the old ear. I would give that a real serious try in that situation. I am bilateral the only difference being the one ear lost hearing and balance ten years ago due to surgery. I can tell though by sensations in that ear that it is in that ear too. I have only one fuctioning ear so i do think about these aspects a lot.
     
  8. Clare

    Clare Active Member

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    Cricket, where are you in your decision about destructive treatment? Have you found a magic decision tree that can tell us how to come up with the best answer?

    Since my last post on your thread I had another VNG with air calorics. The downside is that the results were so imprecise I'm not sure useful information was gained from them. I now understand why water calorics are typically used -- they can tell clearly how each ear is performing for balance, and that can help to know which ear to treat.

    After the air VNG I received a copy of the audiologists test summary, but it references so many anomalies and abnormals that I can't make sense of it. When I called the nurse line, I was told that the doctor will go over it all with me at my visit in two weeks, and that she will also be offering me a gentamicin injection to do at that same time. My biggest fear is having permanent imbalance if my good ear declines after killing off the balance function in my bad ear. I don't like feeling pressured to make the decision at the same time I am asking questions about it. I know I can put it off, but I'm really struggling with sudden vertigo attacks several times a week, and two just yesterday. The attacks aren't the fierce spinning and vomiting that went with the inflammation, but they are immobilizing and nauseating.

    If anyone has posted here about gent + bilateral, it would be helpful to read their threads, but I don't know how to search for that. Maybe some people who've been around a while can think of people who've posted about that.

    Best of luck to you.
     
  9. Cricket

    Cricket Member

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    Clare,

    I went back to see my ENT surgeon last week and he surprised me by now recommending the endolymphatic sac decompression surgery(ESD) on my better ear. He said that I would have a 75% chance of eliminating the vertigo coming from that ear and most people benefit only 1-3 years. There would also be a 5% chance of losing more balance and hearing in that better ear. He said if he did the worse ear, I would see little benefit as he thinks most of the vertigo is coming from the better ear, since it has more balance function left. He didn't recommend another series of balance testing, and seemed to get enough information from my audiogram and personal report.

    I have signed a consent form, and the scheduler has called, but I haven't called back or decided if it's worth the risks. It would involve grinding down a large portion of bone behind my ear, have the 5% chance of losing more balance and hearing and smaller risk of damaging a facial nerve (that one worries me most), infection etc.

    In the best outcome it could stop the vertigo coming from that better ear for a few years, maybe longer from some accounts I've read, but I could still be getting some vertigo from migraines or possibly the worse ear. I don't think there is any way to be sure where it's coming from or why. It does make sense that the better ear should be treated, but not damaged at this point.

    The destructive measures like Gentamicin or Labyrithectomy weren't brought up. The Gent has a higher chance of damaging hearing and is designed to destroy some balance function, and Laby will take out both hearing and balance. I imagine he knows that I am not interested in losing either. I did ask about the daily dizziness and he said it was likely due to the build up before an attack, but could not say if that would be resolved through the ESD surgery.

    I'm still thinking of what to do, as I'm pretty risk adverse, and like you, don't like being pressured into a decision.

    If they can determine that your vertigo is coming from your worse ear, it may make sense to go with Gent injections on that ear. The injections won't destroy all of the balance in that ear, just enough to control vertigo, and I've read there is a 25% chance of hearing loss, if that is a concern.

    I'm afraid I don't have much clear advice to offer you with regard to bilateral meniere's options. It doesn't make sense to purposely destroy balance or hearing in the better ear, and it seems of little benefit to treat the worse ear if balance and hearing there has mostly been lost already. I would try to pin down your ENT on exactly where the vertigo is coming from before proceeding.

    My ENT thinks my worse ear is nearly burned out already, and the ESD surgery on the better ear is the only option left, as it carries little risk of further lost hearing and balance. Maybe I'd get a different set of options from another ENT?

    Let me know if you have any other questions, send me a PM if you like.
     
  10. Bulldogs

    Bulldogs Well-Known Member

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    If i went bilateral i would treat both ears the same and follow the same protocol for both ears. i have already had one laby and if i needed another one i would do that. I would be treated by Dr. Douglass Mattox at Emory or Dr. Stephen Rauch at MEEI (Harvard).

    I would use a cochlear implant to hear and and if after the second laby i needed to use a cane so be it. I will not live my life afraid to leave the house and miss out on my kids life with my head in a toilet or bucket waiting to barf for the next 10 hours knowing there is something i can do to fix it.

    There are many people on this forum who have killed both ears and use cochlear implants to hear and they live a pretty normal and productive lives, they travel, they work and most of all they enjoy family, friends and loved ones without the worry of Menieres.

    PS: if i could get into the vestibular prosthesis trial at Johns Hopkins with Dr. Della Santina then i would investigate that as well. From what i hear and have been told it is going incredibly well.
     
  11. Clare

    Clare Active Member

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    What I don't understand is how you have the ability to balance if both labyrinths are gone. Is it all based on vision and touch then? The idea of permanent imbalance is what scares me most.
     
  12. June-

    June- Well-Known Member

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    Yes, i think it is all touch and vision at that point. That is not nothing but i anticipate in the dark i would have little to no balance function and it would be quite limited at all times.
     
  13. Cricket

    Cricket Member

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    This looks like a good description of what life would be like after dual labyrithectomies: https://vestibular.org/BVH

    There are real problems with oscillopisia and balance in such circumstances.

    And cochlear implants do not restore hearing back to normal from accounts I've read.

    These are very last resort options one would have to decide whether the trade offs are worth it.

    Also, research continues on hair cell regeneration and it may be possible in the near future: http://dizziness-and-balance.com/disorders/bilat/regeneration.htm
     
  14. damom458

    damom458 New Member

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    Hi Cricket,

    I've been bilateral from the start almost 30 years ago. I did the sac decompression with mastoid shunt in both years and it only helped for 3 months, but didnt notice any changes in hearing. Finally I did the vestibular nerve section in the worst year in 2004, and although I have had hearing loss in that year it really helped. I would rather deal with hearing loss than the spinning.I still had flare ups but it was, much better. In the last two months the beast is back with a vengeance. I'm concerned at this point what if any my options are. Going to the ENT on Wednesday and hoping I can get some answers or be referred out for help.

    Surgery is a big step, but when you've tried most of the options and don't have a great quality of life I was will to take the risk.

    Debbie
     
  15. Clare

    Clare Active Member

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    Helpful articles, Cricket. And damom, I wish you strength, luck and wellness. This tradeoff between imbalance, oscillopsia and vertigo is to me the biggest concern with facing the decision of a destructive treatment.

    Setting aside any hearing concerns, is gentamicin treatment able to stop vertigo while still leaving some vestibular function? If so, does that depend on the treatment protocol used (low dose over long time vs the blitzkrieg 4-in-a-month approach)? Or on the expertise of the doctor? Does the strength of your vestibular function going into the treatment matter?

    If you are already profoundly deaf in your unilateral ear, would you go straight to laby which is more certain to stop the vertigo, or would there be some long-term vestibular advantage to doing a series of gent that may not fully treat the vertigo permanently?

    On a slightly separate topic, are there any bits of data that can help predict the risk of going bilateral beyond the oft-quoted 20-50%? I read somewhere that the longer you've had mm, the greater chance of bilateral involvement. Are there any other factors that can give an indication of risk, or is it just luck of the draw until you are symptomatic on your other side?
     
  16. Cricket

    Cricket Member

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    Clare, Have you seen this chart: http://dizziness-and-balance.com/disorders/menieres/menieres%20last%20resort.html

    He seems to have good information and from what I understand the low dose gentamicin is given in one or two shots in order to prevent vertigo by damaging/reducing the balance function so you don't experience the large drop between say 90% and 0, down to a lower% and 0 during and attack. Because your systems will have adapted to the lower balance function. If gentamicin fails, then it's on to VNS or Laby with cochlear implant.

    I would rather try the Gent first as then there would be a future possibility of restoring the hearing and balance through future technologies, however remote that chance.

    Your ENT should be able to explain a lot better than I can. Hope that link helps.
     
  17. Cricket

    Cricket Member

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    Debbie,

    How did you determine which ear was causing the vertigo? I've had meniere's in my worst ear for about 9 years and in my better ear about 3. The hearing fluctuates much more in my better ear, but the hearing there is almost always better. During a build up to an attack both ears are full, tinnitus becomes very loud, and hearing drops to where I can't understand any conversation (maybe a shouted word here and there). So, I don't really know for sure which ear is causing the trouble, though my balance when last checked was down to 30% in the worst ear, so my ENT assumes that the vertigo is mostly coming from my better ear now.

    My ENT suggest doing the better ear, but I haven't decided as you have experienced, the results often don't last long, though I've read accounts by some that have been helped for 10 years. Really a gamble I guess.

    Sorry to hear you've had this trouble for 30 years. My ENT said the meniere's ear usually burns out in 10-12 years if I remember correctly. I hope you will find relief. Could your new flare ups be caused by something else, like Migraines? Let us know how it goes.
     
  18. Clare

    Clare Active Member

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    Cricket -- Thanks for the link to Hain's treatment protocol. I will discuss it with my ENT at the next visit.

    Debbie -- The chart that Cricket linked shows to consider autoimmune disorder as a potential cause of bilateral Menieres, and to consider immunosuppressants. Have you been down that path already, and was there anything useful from it? I hope your ENT visit is helpful on Wednesday.
     
  19. Peter rabbit

    Peter rabbit Member

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    Hi I had the vns three years ago it worked really good with no vertigo. Since then I have the disease in my good ear. I'm law enforcement and I did the nerve section to be able to stay working. Does anyone here know of my options from here?
     
  20. sjw111

    sjw111 Member

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    You and I have a lot in common. After a rough few years with my L ear I had a labyrinthectomy. Which of course took out the balance system and hearing in that ear. Life was good. Then about 5 years later it hit in the "good" R ear. That was about 20 years ago. I had declining hearing in the R ear along with normal dizzy balance issues text book Menieres. Over time the vestibular issues have become less violent and frequent. But hearing now at zero. Now having to look at CI in the right ear. So again, lots in common. I am maybe a little ahead of you on the curve. Here is a good question for you....when is the last time you have had a VHIT test? Vestibular testing has come a long way. Used to be just ENG (the ice water thing) and rotary chair (the gold standard but of course does not give individual ear results) But now with VHIT test you can find out more about each ear....to assure the nerve section is still at 100% reduction...and to find out what is happening in the other ear. We are all partial to certain care providers. I am partial to Dr Tim Hain....does VHIT in his office....a GREAT second opinion person if he is not in your geo area. He is caring and kind...takes his time with you....stays in touch via email. Also some new docs out there now that are promising. Holler back if you need me. Glad to see you have Bulldogs on the thread. We go to the same primary doc. He is a good man with good info. Peace. Sid
     
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