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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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  • Guest
    Guest benjamin80326

    Posted

    As others have mentioned, have you considered the endolymphatic sac decompression procedure before proceeding to the labyrinthectomy? I have had the injections years that really didn’t work. I continued maintaining using a diuretic and low sodium diet. I would have vertigo off and on and used diazapam to calm them as much as possible. My hearing is poor in my right ear. In May this year, vertigo took a fierce turn that resulted in me having the sac decompression surgery. My ENT considers an interim step before doing something final. Recovering is not easy but I am regaining my balance to a degree. Still have unsteadiness and off balance a bit but have some degree of independence without use of assist devices. 

    • judy2018
      judy2018 Guest

      Posted

      Wow, your story mirrors mine , I’m going to have have the sac removal done soon. When you get it done are you more off balanced and dizzy or about the same? 
    • Guest
      Guest judy2018

      Posted

      Hi. I am more off balance than before. I went through some vestibular therapy but decided to pause to get some physical therapy also. The surgery affected my balance, gait, and vision  heavily for about a month afterwards. There was more vertigo for that month too.  So physical therapy is necessary for me. Surgery can affect people differently as we know. 
    • Guest
      Guest

      Posted

      I’m happy not to have vertigo , at least for a while.  This disease is so debilitating. 
    • christina91807
      christina91807 Guest

      Posted

      Hi Ruby,

      Were you constantly dizzy before the surgery? I'm debating it but obviously only want it if it'll improve my constant dizziness

    • Guest
      Guest christina91807

      Posted

      I wasn’t constantly dizzy. I suffered with sudden vertigo or BPPV often. Then I was hit with a vertigo attack that I could not get under control. I ended up being hospitalized for a week undergoing sedation. The attacks just kept coming. My sodium was under control.  When you say dizzy, do you mean vertigo?
    • christina91807
      christina91807 Guest

      Posted

      Nope, I mean just being constantly dizzy, not being able to walk properly or look at certain things without getting vertigo - i used to have vertigo attacks but since taking betahistine they have pretty much ceased. I am left with the residual dizziness that stops me living life. Like, turning my body makes me dizzy etc any fast movement does too. Would sac decompression help that? I've spoken to a physical therapist who thinks the endolymphatic fluid is unable to drain from my ear, so I assume it would? Were you quite ill for that month after surgery?

    • judy2018
      judy2018 Guest

      Posted

      I’m good until I have a attack, my balance is good and I’m not dizzy unless I have a attack. I’m wondering if the operation would hurt me more then help me
    • Guest
      Guest christina91807

      Posted

      Yes, I was ill. It was no picnic. I wish I had another alternative. Surgery should be a last resort because the outcome is never guaranteed. 
    • Guest
      Guest judy2018

      Posted

      Try vestibular therapy. My doctor put me on betahistine after the surgery. He caused my balance to worsen. He hadn’t offered it before before I was doing okay controlling the episodes through low sodium diet. As the body ages and changes so does our head vessels especially when they are already compromised with a disease.  I am trying to regain some degree of quality of life. Very difficult. 
    • Guest
      Guest

      Posted

      I meant the betahistne caused my balance to worsen.
    • benjamin80326
      benjamin80326 Guest

      Posted

      I've reached the point that nothing seems to work; medications, balance therapy, yoga, sac decompression, etc.  I'm hoping the labrynthectomy works as I don't wish to live my 80's with vertigo.

      I had no problem following my sac decompression which worked for over 1 1/2 years.  My brother has had it and no longer suffers from vertigo.  Different things work for different people.  I hope you find relief soon.

    • Guest
      Guest benjamin80326

      Posted

      Thank you and I hope all goes well with your surgery.  You had no balance issues after the sac surgery?  Did you have more vertigo immediately after surgery? Vestibular therapy ?
  • wendy45166
    wendy45166 benjamin80326

    Posted

    Hi Benjamin,

    I am sorry to hear the injections did not work for you.  I am 3 months post op from my labyrinthectomy and am doing great.  Today is my 1st day back at work and it feels so reassuring that I wont be spinning.  I pray for you that surgery relieves you of this dreadful disease, as it has for me.  Be positive and know that relief is near!

    • judy2018
      judy2018 wendy45166

      Posted

      What steps did you take to help your MD before the big surgery ? And how is your balance after surgery ? Do you only have it in one ear? Sorry so many question 
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