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Posted , 11 users are following.

benjamin80326
benjamin80326

In an earlier posting I talked about the possible positive progress with the 4th injection of gentamicine.  I am sorry to report that the regimine of the shots did not work and the episodes of vertigo has since returned.  My doctor informed me yesterday that the scar tissue from my cochlear impalnt has prevented the gentimicine to penetrate the inner ear, so he has recommend a labyrnthecomy in October.  I will let you know how that works.  Wish me luck, my friends.

0 likes, 43 replies

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  • dbmarie3
    dbmarie3 benjamin80326

    Posted

    Im Sorry Benjamin,

    after hearing all the stories from surgery im so glad I didnt do it. hoping the best please keep us updated.

  • christina91807
    christina91807 benjamin80326

    Posted

    Benjamin, please go onto facebook and take a look at: Meniere's Vertigo Tinnitus TMJ : Meniere's no more chat and support group

    Go onto the files section and look at the testimonies. Many people there were told that surgery was their only option but it doesn't have to be. I wish you all the best.

    • benjamin80326
      benjamin80326 christina91807

      Posted

      I did go to that facebook page on TMJ but seriously think it's not my problem, but will ask my dentist when I see him later this month.

    • christina91807
      christina91807 benjamin80326

      Posted

      Did you read the files? I had no jaw symptoms and nor did a lot of people on the group. Also just to note that most dentists aren’t at all equipped to diagnose it properly especially if it manifests as Menieres. But do what you feel is best smile I wish you all the best!
    • christina91807
      christina91807 judy2018

      Posted

       a trained TMJ specialist (not regular dentist) who has experience treating Meniere's symptoms in patients smile

    • judy2018
      judy2018 christina91807

      Posted

      Does it have to be a dentist? Or can you go to a doctor that specializes in sleep and jaw issues? Also did you ever go to a chiropractor? And did that help
  • Bluesmann
    Bluesmann benjamin80326

    Posted

    so how is the cochlear working and what was the reason for the genticine? dixzziness?   and I'm assuming the labrynthectomy is for the dizziness?...are you on betahistine at all

    Thanks

    • benjamin80326
      benjamin80326 Bluesmann

      Posted

      I was nearly totally deaf in the right ear thereby a cochlear implant was justified.  It works great and has restored much of my hearing on that side.  The gentimicine is to kill the inner ear to stop vertigo but it hasn't helped.  Dr. said scar tissue from implant probably blocks gentimicine from doing its job.  Never been on betahistine at all.

  • judy2018
    judy2018 benjamin80326

    Posted

    Wow that is huge , sorry the injections didn’t work , we would all do anything to get rid of this stupid disease. I hate it so much. Please keep posting through your steps of this surgery to let us know how your balance is afterword. Even being off balance makes me throw up.  Prayers your way. Let us k ow when you get the surgery. Did you ever have the sac removal from behind your ear surgery? That seems to be my next step
    • sarah87228
      sarah87228 judy2018

      Posted

      Hi what have been your previous steps if that surgery is next in line for you? 

      Thanks 

    • judy2018
      judy2018 sarah87228

      Posted

      Just meds, he doesn’t like the injections but he does think removing the sac and giving you more room for the fluid helps the most. Any thoughts?
    • benjamin80326
      benjamin80326 judy2018

      Posted

      My younger brother and I both had the sac decompression surgeries.  It worked for him, but not for me.  Vertigo returned after a year and a half, hence the labrynthecomy.
    • benjamin80326
      benjamin80326 sarah87228

      Posted

      Anti-seasickness medications, sac decompression, gentimicine, and now the surgery.
    • sarah87228
      sarah87228 judy2018

      Posted

      I am also on Just medication. Had my betahistine doubled about 3 weeks ago and have been able to return to work for 2 14 hour days this week but they haven’t been easy. 

      I have done a lot of reading up on the surgeries and I personally would have the sac decompression, my consultant has not suggested any surgery yet but this is what I will be asking for on my return in November. 

    • sarah87228
      sarah87228 benjamin80326

      Posted

      I’m on betahistine and odansatron for the nausea that I have more or less every day. 

      I’m going to refuse any injections as I feel this is a pointless attempt and a waste of NHS money with a relatively low success rate. 

    • Guest
      Guest benjamin80326

      Posted

      Sorry I didn’t see this response before writing.  I am new to the forum .
    • judy2018
      judy2018 sarah87228

      Posted

      I live in the states and no doctor and I have been to  four so far will not write me out a prescription to Betahistine . They say the way it flushed out the ear it also flushes out other parts of your body. But so many on this site take it. Maybe because it isn’t FDA  approved here they are worried about lawsuits. Who knows but I would love to try it. 
    • judy2018
      judy2018 benjamin80326

      Posted

      I would take the year and a half , but it’s a shame it didn’t last longer . So sorry for all your struggles. There needs to be something when you feel your ear filling up before the dizziness and vertigo starts that you can put in your ear to dissolve the fluid. All we need is a smart inventor . 🙏🏻

    • sarah87228
      sarah87228 judy2018

      Posted

      I hate how different countries have different medication. Here they seem reluctant to prescribe a diuretic due to its effects on your kidneys and not having excess fluid elsewhere. 

      Drives me insane 

    • benjamin80326
      benjamin80326 judy2018

      Posted

      I wish there was something that would cure all us vertigo sufferers.  I'm going to be 80 and don't wish the remaining years hombound with vertigo.

    • benjamin80326
      benjamin80326 judy2018

      Posted

      Will keep you posted.  BTW had a huge episode this afternoon.  I have a friend who drives me on all my errands as I hate to be somewhere and not be able to drive home.
    • judy2018
      judy2018 benjamin80326

      Posted

      I really hope you find relief, that is awful you have to suffer in this way . And yes it is truly suffering . I am 52 and I am ready for it to be done now. I always say find me a cure or give me a needle and send me to heaven , it can be that bad😢

    • benjamin80326
      benjamin80326 judy2018

      Posted

      Judy, I understand where you're coming from, but just hang in there and find a good otologist (they have more advanced knowledge and training than an ENT specialist).  There are many steps for you to find resolution to these harrowing experiences.  Take that needle out of your mind and seek help.  I find the forum helps, knowing there are other people going through similar experiences and eventually finding something that helps.  Prayers your way.

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