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Endolymphatic Sac or VNS surgery?

Discussion in 'Your Living Room' started by Jsnider, Nov 14, 2018.

  1. Jsnider

    Jsnider Member

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    Hello - everyone. Please see my original note as to why i am asking this question. I had another fairly severe episode during the night at around 4am this morning. I think it woke me up. Anyway - i feel completely normal now but I had to sleep about 3 hours before the vertigo subsided. I am taking my medication, diligently watching my sodium intake, drinking tons of water, taking an antiviral, and going to a chiropractor. But the vertigo still exists. As explained above my doctor will not do a Gent injection. It looks as if the next step is some sort of surgical procedure. So my question is - with everything including the extent and complexity of the surgeries, the side effects after the surgery, the probability of success, and everything associated with the surgeries, would an endolymphatic sac surgery be preferable or the VNS surgery be preferable? Has anyone who has had the endolymphatic surgery had complete success for a good long while or does the vertigo come back? Will any doctor even perform a VNS surgery with a perfectly good balance nerve in both ears? I am a bit at a loss right now as to what to do. In reading all of the posts - it seems as if there are moderate to major issues with both surgeries either that it doesn't work long term or other not pleasant side effects. I would love some thoughts here. Thank you.
     
    Last edited by a moderator: Nov 14, 2018
  2. solari

    solari MM.org Janitor Staff Member

    Admin Post
    @Jsnider, I moved your question into its own thread because it was essentially a completely different topic so you'll get better responses to a new title. : )
     
  3. Jsnider

    Jsnider Member

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    Ray - Thank you very much for starting a new thread. I thought about doing that but did not because I referred to my original post on endolymphatic surgery but I agree and think it is good idea. So - for anybody who would like to understand my situation a bit better to help with your thoughts, please refer to my original post on shint surgery started by me - jsnider. I always appreciate everyone's feedback. You have no idea how much it helps.
     
    • Fistbump/thanks Fistbump/thanks x 1
  4. tdoak

    tdoak Member

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    My approach has been the Endolymphatic Sac Decompression surgery first as it is non destructive and recovery is pretty easy. If the surgery is not effective you can always move to the VNS or laby.
     
    • Agree Agree x 1
  5. Pupper

    Pupper Active Member

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    Jsnider. I'll grudgingly admit that since both your balance nerves are still fully functional, that the shunt is the conservative/correct choice right now. I'm just biased against it since it didn't help me. It's easy to start overthinking the what-ifs to the point of not doing anything and just wasting time and causing more anxiety. Just follow the conventional steps.
     
  6. Clare

    Clare Active Member

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    I know of one person who had the shunt surgery and then had to repeat it in a couple of years, and then she was beginning to have more problems after a time. She didn't have much hearing loss, so it seemed a good choice for her. Unfortunately, our local meniere's-tinnitus group disbanded, and I don't know how things have progressed for her.
     
  7. Jsnider

    Jsnider Member

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    Thank you all very much. 3 episodes in 9 days and in the days with no episodes i feel better on some of those days and worse on others. I am going to try to get an appointment at Keck-USC in So Calif. as a 2nd opinion given my regular doctor is at the House Ear Institute. But whereas I was adamant against doing the endolymphatic sac surgery 6 months ago, the episodes are getting much more frequent and there are just too many bad days that I am willing to do it now. I am just worried that surgery will not help long term and i will need to do something much more invasive ( VNS/Laby) with a more difficult recovery. Could someone tell me how the recovery is with endolymphatic sac surgery? Why am i so afraid of the endolymphatic sac outpatient surgery? Thank you all very much.
     
  8. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    I’ve had both surgeries this year - sac surgery in Jan and then labyrinthectomy in July. I can promise you the sac recovery - assuming no weird infections or complications - is really not a big deal. You’re facing going home with a weird bandage cup thing over your ear, which only stays on a day or two (I forget). No new balance issues or anything like labyrinthectomy recovery. A bit of discomfort that some ibuprofen should handle.

    Of course, surgery of any kind is nothing to take lightly so it’s good that you are leery. But with the condition you are in, after an extended period of time... for me the risks were well out weighed.
     
  9. Jsnider

    Jsnider Member

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    Thank you Please no Dizzy. Wow - 2 surgeries this year. I assume that the reason you had the labyrinthectomy only 6 months after the sac surgery was because the sac surgery gave you no relief. How bad was the laby surgery? Are you free from vertigo issues now? Please detail your last 5 months after the laby surgery? How invasive was it and how long before your balance came back? Are you back to some normalcy today? Thank you.
     
  10. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    I actually logged my recovery here on this board over the last 5 months... I’m on my phone so can’t link to it but maybe it comes up if you search my user name. I actually came home same day as laby, though that is not the norm, but what my doc recommends barring any complications. He was also sending me home with a full support system in place with visiting family to help w the kids and the ENT I am married to. The recovery is no walk in the park, but it’s been well worth it. No vertigo since, knock wood. Wasn’t up and around for several days... relied on walking sticks for several weeks... didn’t drive until about 5 weeks. But after the hell I was in prior, all worth it. More details in that thread.
     
  11. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    • Winner Winner x 1
  12. Jsnider

    Jsnider Member

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    Thank you PleaseNoDizzy. What a journey for you. I am so glad you are through it and don't have to be worried about where/when the next episode will be. No regrets rights? I have a feeling i have a long road ahead of me. Thank you again - very helpful. I will keep you posted.
     
  13. Jsnider

    Jsnider Member

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    Please No Dizzy - A couple of questions. Why did you not try the Gent injection? Would they perform the laby surgery with a perfectly good balance nerve to start with? My balance nerve in my bad ear after the VNG was fairly normal and relatively symmetrical with my good ear. Does a perfectly good balance nerve limit my options going forward? Why the laby surgery versus the VNS surgery? which is worse and the next step if the endolymphatic sac surgery doesn't work? Can and will you be able to eventually do most everything after this surgery that you could do before the whole ordeal started? Thank you once again.
     
  14. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    I was offered the gent route but ultimately decided against it. FOR ME (and that’s key — everyone’s situation is different) I was just DONE. Unless I got super lucky, having those gent injections wouldn’t remove the possibility of further attacks, nor the anxiety I was dealing with anticipating the next attack. Also key, my hearing was in bad shape on that side after the previous 8 months of attacks. Prior to that, it was a mild/moderate loss. Gent with the hopes of preserving hearing would have made sense. But that last year brought further loss, and even worse, lots of distortion that I hadn’t previously had. No aid can correct for that. I know you said your balance still tests well (mine was awful btw). How is your hearing?

    I don’t think a good balance nerve limits your options, BUT you want to think long and hard before putting yourself through the labyrinthectomy. My belief is that my (tough, but in the scheme of things, not-bad and quicker recovery has been due to the fact my right balance was pretty much shot going in. My brain had been working on compensating for many months prior. Years actually. Due to the fluctuating nature of the condition, it still wasn’t doing great... but I feel like I was at such a low in terms of balance it could only get better. I can’t speak at all to going into a VNS with good balance since I didn’t have one. But VNS vs laby was an easier decision for me because my hearing was pretty bad with not much to preserve. And VNS is literally brain surgery. Much more invasive.
     
  15. Clare

    Clare Active Member

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    I was also offered gent injections, but more than anything I needed to be free of the anxiety of the vertigo attacks that had so altered my life. Gent injections are much less invasive, and at the same time they are less definite. For some people one injection provides relief for a year or more. For others, a series of injections is required. In either case, you're still left wondering whether there will be another attack, and when it will come. For me, that was not a tolerable situation, given how disabling the attacks had become. I needed my life back, and the laby was the most certain way to get it.

    When thinking about destructive treatments, (vns, laby, gent) there are two considerations outside the surgery or not. Those are hearing and balance. My understanding is that vns can halt vertigo while preserving hearing. But it is a surgery with riskier side effects (facial nerve effects, etc.) and sometimes the nerve is not completely severed, leaving the possibility of ongoing vertigo. If your vertigo is disabling while your hearing is intact, then vns may be a good choice.

    Gent is less predictable about addressing the vertigo, but also avoids the healing process associated with surgery. Some websites have talked about the possibility of titrating the gent so that vertigo-inducing hair cells are destroyed while hearing hair cells are preserved (they are slightly less sensitive to the toxicity of gentamicin), but I have never seen any studies about how to do the titration or what results have been achieved. My impression is that it is still in the theoretical realm.

    If anyone has better knowledge about this, please correct me or add comments.

    Laby is an excellent choice when you realize that your quality of life is so compromised that you must have definite relief from the vertigo in order to live a meaningful life again. It stops vertigo.

    The degree of balance you currently have is likely to affect how easy your recover is. Whether you have a lot or a little balance to regain, with time and through vestibular exercises from a skilled therapist, you will be able to retrain your brain to accommodate to the missing vestibular input. Before my laby, I had 65% balance function and no useable hearing on my left side. The surgery totally messed with my balance; however, after 3 months, my balance is about 95%, and my doctor expects continued improvement through the year, and I feel I am on that trajectory.

    You are right to get as much information as you can about your options. At some point you will know what is best for you, and you can pursue that confidently. I credit the wonderful people inhabiting this site for making my life meaningful again.
     
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  16. Peter rabbit

    Peter rabbit Member

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    I had the vns in 2015 and it was a complete success. The recovery was intense but it's possible. I had a good nerve in my diseased ear and my doc did the surgery because it would save my career in law enforcement. He also said that this was the best option verse the injections.
     
  17. Jsnider

    Jsnider Member

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    Peter Rabbit - Thank you very much and congratulations. So you had a good nerve in your bad ear? I was beginning to think I am being misdiagnosed with a good nerve in my diseased ear. Why the VNS versus the Laby or Gent? When you say the recovery was intense could you be a bit more specific? How long until you were back at work and functioning relatively normally? Thank you for your response. Could you be a bit more detailed in your/doctor's decision and the ultimately surgery/recovery? Thank you.
     
  18. Jsnider

    Jsnider Member

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    Clare - When you say that the Laby surgery messed with your balance - could you be a bit more specific? Could you walk? Was it as bad initially as it was when you were dizzy? I had an episode yesterday and my wife had to virtually guide me into bed. Was the balance that bad at the outset? Could you sit and at least watch TV or work on a laptop without any sudden moves? Are you incapacitated and if so for how long? Thank you.
     
  19. Peter rabbit

    Peter rabbit Member

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    Hey their thanks for the email. I remember being inquesitive before I had the vns. Except I did not know this page was in existence, so I was alone. Well I hope I answer all your questions so here I go. My surgeon decided to do the surgery for me because of my occupation in law enforcement. He said that will work better than the injections. I never had the injections. I was in the hospital for four days and it all started with being in intensive care for neurosurgery patients. The vns surgery is no laughing matter at all. It took me out of work for three months and to this day I still think I went back to early. Two of the days iin the hospital I was extremely nauseous and uncontrolled vomiting. In matter in fact I vomited one on my dear wife. She is a trooper though because she has really hung in their through this whole sickly ordeal. I was super aggressive and maybe to fast at getting on my feet. My doc said that to me because I walked in the hospital as much as I was able to. I would recommend that if you do this surgery that it is great to walk alot on uneven ground and balance exercises. My doc sent me home with balance exercises. Their is a extreme recovery to this because you have to pretty much learn to walk again. It is nothing I would want to do again, although I still don't regret it because the vns is well worth it. I do believe I lost some hearing from this surgery. I'm now in the moderate range for hearing loss. The hearing aid works as long as that ear does not fluctuate. So, again I hope I answered your questions. I hope the best for you and the decision you make.
     
    • Informative Informative x 1
  20. Clare

    Clare Active Member

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    The imbalance after losing your vestibular function is very different from the stumbling dizziness of a malfunctioning vestibular system. When it's malfunctioning as yours was, the brain cannot compensate because there's no consistency to the signals it's getting. So it reacts with attacks of vertigo, dizziness, stumbles, nausea, etc. to the random hiccups.

    Post-laby, it is a matter of retraining the brain to accommodate to *no* signal rather than react to the previous faulty and erratic signals. Over time the brain learns to balance based on the other side's vestibular system, on vision, and on proprioceptors (muscle signals from ankles, feet, and legs). Especially if you are active and do vestibular exercises regularly after the surgery, you find increased stability every week. After 3 months, I rate my balance at 90 - 95%. I notice imbalance only occasionally and it does not interfere with my life. Last week the doctor said I may be back to 100% balance function in a year. I have found new confidence and hope after surgery, where there had been the opposite before.
     

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