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BPPV and sac decompression or Labyrinthectomy

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After my sac decompression surgery, I asked my ENT whether it would lesson my bouts with BPPV. He simply said that it was different. I knew that it really meant "no". It is awful and unpredictable too. I have gone to vestibular therapy (VRT) and have eply maneuvers when this occur. They just keep reoccurring. I notice that they certainly come if I lie on the affected side so I try to avoid it at all costs. I sleep with two pillows and some times three for more elevation. I seem to never sleep well because of the limitations on how I sleep. I was wondering whether others are having this experience after either of above surgeries? Has anyone found a way to permanently get rid of BPPV? I will be returning for more VRT soon. I currently in physical therapy for my knees but it requires lying down and that can cause an episode as well so it is not easy to relax during the sessions.  

0 likes, 20 replies

20 Replies

  • pauline_74653
    pauline_74653 Guest

    Posted

    Rubye, I'm really sorry you're having such trouble. I've never had sac decompression. I have menieres for four years, and about two years before that I got BPPV. I attended my consultant for about a year and he made a misdiagnosis. He wanted to do a labyrinthectomy on me, but first sent me for a second opinion. That consultant diagnosed the symptoms as BPPV and immediately did an epley's manoeuvre. He told me it wasn't a permanent job and that the crystals can pop out again at any time, but thankfully they haven't.

    Like you, I had spent a year trying to avoid sleeping on my left side and propped up on pillows. Or sometimes I would immediately lie on my left side to get the spin over and done with. It's terrible what you're going through, I really empathize with you.

    I'm not going to tell you what you should do, or that an epley's manoeuvre will definitely work - everyone is different. I can only tell you my story, and changing consultant played a part in it. I hope something will soon give you relief. Take care.

    • Guest
      Guest pauline_74653

      Posted

      Thank you for sharing. It’s very helpful. I’m happy you got that second opinion. That surgery would have been a tragic mistake.  

      I have such a horrible time with the spinning. Closing my eyes makes it worse for me. I guess it’s fear. The eply maneuver does work but episodes eventually return. I’m thankful that my husband can perform them. Will be going to vestibular therapy again to hopefully gain a lengthier period of being BPPV free. 

      Best to you..

    • pauline_74653
      pauline_74653 Guest

      Posted

      Rubye, I hope the vestibular therapy brings you some relief. And I wish you the strength to cope with it all.

      I've been finding it difficult myself.....the pressure and fullness has more or less cut off the hearing in my menieres ear, and what I can hear is very distorted, plus loud tinnitus. I don't have any hearing in my other ear, so I'm at a terrible disadvantage. I'm on betahistine and a corticosteroid nasal spray for nearly two weeks but it hasn't had an impact yet. But I'm still hoping that it might.....

      Wishing you well, take care.

    • Guest
      Guest pauline_74653

      Posted

      Thank you. I hope that you find relief with your new course of treatment. Never knew that inner ear issues could cause so much difficulty on ones quality of life. But here we are....

      Best to you....

  • Willow4
    Willow4 Guest

    Posted

    They kept diagnosing me with BPPV but it was Menieres all along.  I’ve had 2 Sac Decompressions but I like to lay more flat and prefer to lay on my affected side.  If the maneuvers are not working it may just be your Menieres.  I have not it yet but they say acupuncture can help with Menieres and BPPV.  Good luck
    • Guest
      Guest Willow4

      Posted

      Thank you. The maneuvers do work  but return in a short time and unexpected. I guess I’m just tired of the years of fighting bouts of vertigo. I was really hoping that the sac decompression surgery would end it all for a period but apparently not.  I will continue with vestibular therapy as well. 

      Best to you...

    • judy2018
      judy2018 Willow4

      Posted

      Reading Ruby’s is making me nervous , I’m going tomorrow to make a appointment for the sac surgery , when you had yours how were you after surgery? I don’t want my issues to be worse. Right now I really don’t have any balance issues unless I’m having a attack with vertigo and my vision is never effected . How did your sac surgery go
    • Willow4
      Willow4 judy2018

      Posted

      Judy I had it done in 2009 and afterwards I was almost symptom free.  It takes longer than the week to heal so plan on being out of work for 2 weeks.  My Menieres has always effected my balance so there was no difference but there was a huge difference in my vertigo attacks. 

      Willow 

    • judy2018
      judy2018 Willow4

      Posted

      Does the surgery still give you relief now this many years later? Or did it clog and youbare back to  vertigo attacks
  • judy2018
    judy2018 Guest

    Posted

    Why did they give you he surgery? Where you having vertigo issues before? I’m going to have the sac surgery done in my Ménière’s effected ear, but when I’m not sick I’m fine so I’m hoping it doesn’t cause more issues and off balance

    • Guest
      Guest judy2018

      Posted

      I had been having frequent episodes of vertigo since 2014.  I was hospitalized for a week in early May because my vertigo went completely out of control and landed me in the hospital for a week being sedated.   My sac decompression surgery was in May. I have not had episodic vertigo caused by menieres since June. I continue to have bouts of BPPV if I lie in the affected side or anything position that cause the inner ear crystals to move. My balance has been a problem that I didn’t have before the surgery. It is gradually improving with vestibular therapy.  It will take a while.  Where you are ,right now, sounds similar to where I was prior May. 
    • Guest
      Guest judy2018

      Posted

      I also loss additional hearing in the affected ear.  For the month after my surgery, I had more numerous bouts of vertigo with poor vision, unsteadiness, and poor balance.  It takes time recover.  My vision returned. I remain on a low sodium diet. I also take a diuretic. I’m continuing to explore additional options to combat further deterioration of that ear.  I’m very careful with my good ear and praying that it remains that way. 
    • judy2018
      judy2018 Guest

      Posted

      It really makes me afraid to get it, I think of it as giving my fluid more room so my virtigo isn’t triggered so often , but like I said I only have issues when I have vertigo but really no balance issues. I have been wearing these wrist band one on each wrist that really seems to help my balance . And I am on a low sodium and water pills. I haven’t had any issues with driving . Should I not get the surgery?
    • pauline_74653
      pauline_74653 judy2018

      Posted

      Hi Judy. What are the wrist bands you are wearing for balance?

      I have no experience of sac decompression, but I wish you well in your decision and hope it all works out well for you.

    • Guest
      Guest judy2018

      Posted

      Hi. You have to remember that everyone is different in recovering from surgery and with the results. My bouts with vertigo were never easy and very unpredictable. They began increasing in frequency.  My doctor did everything to avoid me having surgery because it is always a risk. I had surgery when I had no choice.  I had a second opinion in the past about options and was told that surgery should be a last resort.  So I didn’t have until I had no choice. How often do you have vertigo attacks. What bands are you using? 
    • judy2018
      judy2018 Guest

      Posted

      The wrist band I found them at CVS and it has no medicine in them just something for balance. I had Ménière’s for 5 years but it was the May when my son got married my vertigo attacks started, then in June my mom and dog died and then in Aug dropped off my last born at college 7 hours away from where I live . So my attacks seem to come on with stress and hit weather.  I wanted the surgery as a precaution 

    • Guest
      Guest judy2018

      Posted

      Sorry to hear about your family situations. As I understand it, stress can be a major factor in triggering vertigo and so does barometric pressure. I totally agree that both are not good for this condition. I have experienced that too.  I also had numerous episodes that came on out of no where. It is a tough decision. I have been there.  

      Best of luck ....

    • pauline_74653
      pauline_74653 judy2018

      Posted

      Judy I'm really sorry you've had such a stressful time, and my condolences on the death of your Mother. These things certainly don't help when someone has menieres. But I don't think your attacks happened because of your stress, I think it's more a case of any underlying condition will be exacerbated by it....and not just menieres. So I feel it's important to minimise stress in our lives and that we try to keep well in a holistic way....I'm really trying, but it's not always easy.... I hope you get some relief soon.

      Are the wrist bands retailed for travel sickness? (I'm not familiar with CVS as I live in Europe.)

    • judy2018
      judy2018 pauline_74653

      Posted

      Yes the wrist bands for travel sickness, pregnancy or balance issues. It might be in my head,but it does get rid of the floating feeling for me that I constantly experience. My kids think they r ugly but at this point anything that makes me feel normal I will try. 😀 

    • pauline_74653
      pauline_74653 judy2018

      Posted

      That's brilliant, I'm definitely going to try them. And you're right not to care about what they look like....if they help, that's all that matters 👍Take care and all the best.

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