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How far have you gone to stop this?

Posted , 4 users are following.

frances101
frances101

Dear All, I've have Menieres for 5 years now. It came on very quickly and has been quite the force to be reckoned with ever since. In 2014 I had endolymphatic sac surgery to decrease the pressure on the sac by making a small hole in my skull. Unfortunately this was unsuccessful. The "episodes" aren't getting any better and when they happen they seem to be getting more violent, I.e. Extreme vomiting and vertigo. My dr and I are at the point of discussing the next steps. However the next steps seem to be either vestibular nerve section or labrynthectomy. I was wondering if any of you have had to go this far? And also did either one of these surgeries help tremendously?

Thank you all in advance.

0 likes, 11 replies

11 Replies

  • Bluesmann
    Bluesmann frances101

    Posted

    I havent yet but have had steroid injections put on betahistine and still getting dizzies so i am about where you are...my friend however did have the vestibular nerve cut and says it gave him his life back....they did not hit his hearing nerve so his hearing stayed about the same......hes back to riding his motorcycle and in a year hasnt had any dizzy attacks.....We are all different but thats his story.
  • barry61472
    barry61472 frances101

    Posted

    I had a fairly virulent case lasting decades. Finally, in December I had the Labyrinthectomy. I went from having vertigo attacks from 2x to 3x per week to 1 a month. Surgeon said will get even better (1x to 2x every 6 mos. or so.) As an added benefit, the tinnitus is almost completely gone. The only drawback is that I am completely deaf in that ear. But, I consider that a small price to pay for the relief. Blessings to you.
    • frances101
      frances101 barry61472

      Posted

      Thank you. I have a quick question though: did you consider vestibular nerve section at all? Or because of the success rate, you went with labrynthectomy? I have lost about 30% of my hearing on my "bad" side. My dr would prefer to save my hearing, but labrynthectomy has such a better success rate that I'm willing to go down that road.

  • eleftherio33095
    eleftherio33095 frances101

    Posted

    Has intratympanic steroid injections been discussed?

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist,

    Fellow of the European Academy of Neurology

    • frances101
      frances101 eleftherio33095

      Posted

      Yes. I should have mentioned. I did the entire series of injections with no results.
    • eleftherio33095
      eleftherio33095 frances101

      Posted

      The next step would probably be a "chemical" vestibular nerve section, that is, using intratympanic gentamicin injection.  This will stop the vestibular nerve working.  It may affect hearing, but not always, depending on the experience of the laboratory doing it.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist,

      Fellow of the European Academy of Neurology

    • frances101
      frances101 eleftherio33095

      Posted

      I did the steroid injections. I also did gentamicin injections. Currently I have "episodes" once a month. That's not bad compared to some, but it still seems excessive to me after all the procedures I've been through.

      My appt with my dr is at the end of this month. We had previously discussed vestibular nerve section because he would rather preserve the hearing I have, but I would rather the labrynthectomy to remove everything. I understand it's rather extreme, but I am out of options.

    • eleftherio33095
      eleftherio33095 frances101

      Posted

      Because you have done gentamicin injections, in essence you have already sectioned the vestibular nerve, but this time it is a "chemical" dissection.  Discuss this with ENT.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist,

      Fellow of the European Academy of Neurology

  • JMJ
    JMJ frances101

    Posted

    Dear 

    Frances,

    I had excellent results with intratympanic steroid injections.  It took several months (at one injection every 4 weeks) , but ultimately it has resulted in my being symptom-free without any side effects at all. 

    I wish you all the best,

    J-

     

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