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Endolymphatic Sac Decompression - Recovery

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Ronda_5
Ronda_5

Can anyone tell me what their personal experience has been like for this procedure. I'm wanting to know if it improved the vertigo attacks? Did it improve your "brain fog"? I've done injections, been on betahistine since October. Now take 4 pills a day at 24mg strength. Had vestibular testing and have learned that my eyes are not keeping up with my head movements. My sx is scheduled for 5/1. My oldest daughter has her graduation party 5/12. We leave for vacation 5/24. I really need to know about post op recovery. Who has hope to share? I need it. 

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  • Willow4
    Willow4 Ronda_5

    Posted

    I had my first Sac Decompression in 2013. I was in a lot of pain for the first week.  Second week was not as bad.  I was so happy I had it done, I didn’t have any vertigo, tinnitus balance was off a bit but manageable.  No hearing loss so I was very happy.  Then about 4 years later I was developing vertigo again and was in a severe attack.  My dr decided to do a revision surgery.  That was Nov 30 th.  I had a CSF leak and nothing but headaches since.  I am still not back to work.  I ended up with mastoiditis and now I have a bone infection and I start IV antibiotics on Monday for 6 weeks.   I had such good luck with the first one and would recommend it, but after the second I’m not so sure.  

    Debra

    • Ronda_5
      Ronda_5 Willow4

      Posted

      After your second sx, did they start you on antibiotics? I've read this is something they frequently do. I live in the Midwest and am now going to a teaching hospital. My ENT recently told me that they will soon have a betahistine like medication that will be delivered through the nose. He believes it will help many of us. As it will be delivered and absorbed faster. 

      I currently tak Lorazepam (Valium) at the first feeling of an episode. Lately, I've been symptomatic daily. 

      I hope the antibiotics work for you and that you're headaches will clear up. Four years without any significant MD symptoms sounds like a dream to me. 

    • Willow4
      Willow4 Ronda_5

      Posted

      When my symptoms started again I was put on a steroid pack.  I also had steroid injections in my ear but no antibiotics.  I take Valium prn , Dyazide daily. I also take Allegra, singular and nasacort for my allergies.   I will be on antibiotics Monday for this bone infection though. 
    • Ronda_5
      Ronda_5 Willow4

      Posted

      I will be praying that the IV antibiotics are effective and that you'll be able to resume a headache free life again. 

    • Willow4
      Willow4 Ronda_5

      Posted

      Thank you!  It’s been a rough road and I hope they finally have it figured out.  Good luck to you. 
    • Questor
      Questor Ronda_5

      Posted

      Can I ask what hospital you go to? Not sure what you mean by the Midwest? 
    • Ronda_5
      Ronda_5 Questor

      Posted

      I go to KU Medical Center in Kansas City
  • tanney
    tanney Ronda_5

    Posted

    Ronda.  Why do you want to have this surgery?  Is it to correct your "brain fog"?  Are you having vertigo or just light dizziness?  Was the doctor that suggested this procedure a neurotologlist or just a regular ENT?

    I think there are  more benign treatments that can clear up your "fog"....such as vestibular rehabilitation.  Have you tried that?  If not, my recommendation is start that asap.  Also, are you on a diuretic....if so, what dose?  Have you tried a sedative such as Ativan when you have the "fog" episodes? 

    The bottom line is I would try a lot of other things before you undergo surgery.  Good luck!

     

    • Ronda_5
      Ronda_5 tanney

      Posted

      Other than vestibular rehab I can't think of anything I haven't tried. I'm still on a low dose diuretic. I faithfully take my betahistine and eat a very low sodium diet. It seems likely weekly I'm suffering from either vertigo or the inability to turn my head without getting dizzy. I have a mod-severe hearing loss with constant ringing. I can live with each the latter two, but I need to be able to escape my brain fog, episodes of spinning, poor balance . Often I may drive somewhere and end up having to call for someone to pick me up. My eyes are extremely sensitive to movement now. I guess I see sx as my last resort. I don't feel like I'm jumping into it. I'm not opposed to vestibular rehab, I just don't want to waste any more time and postpone a procedure that has been recommended twice to me. 

    • tanney
      tanney Ronda_5

      Posted

      Rhonda, I certainly appreciate your frustration and impatience to get better.  Struggling with MD is a full time job that saps energy and affects everything we do. 

      The way you describe your symptoms: "eyes not keeping up with head movement",  "poor balance", "eyes extremely sensitive to movement" seems to indicate vestibular imbalance which is correctible with rehab. Did you see a neurotologlist and was it they who twice recommended ESD to you?  I ask this because my neurotologlist does not recommend ESD to any of his patients....too many possible side effects and it has only a moderate success rate.  I sure would like to recommend that you inquire about rehab prior to surgery.  Nevertheless, please let us know what you decide and how you are progressing...We care!

    • Ronda_5
      Ronda_5 tanney

      Posted

      Thank you for providing me with more insight. In addition to my MD, I have developed vestibular neuritis. My eyes are constantly fatigued. I actually watched a vestibular rehab video last night and did several of the exercises today. I instantly felt like a went into "brain fog" with alots of pressure in my head. Within an hour, a had a brief vertigo attack that lasted maybe 20 minutes. 

      Do you also get gentamicin injections? Both ENT's I have seen are opposed to this treatment. I have a moderate-severe hearing loss. I'm assuming they are wanting to preserve what I have. 

      MD is a taking toll on me. It's effecting my everyday life as a wife, mother and professional. I was in hopes that I was in the "burn out" phase since my initial diagnosis was 22 years ago. Just this week, I've had 4 episodes of vertigo. 2 of the episodes I had to have a family member come pick me up and drive me home. 

      I've read a lot about ESD and it does rank pretty high as a means to provide some relief to MD patients. I'm ready for some relief. I have three children at home that need their mother. 

      I'm sure you can relate to all of this. I refuse to let MD steal my joy...but lately it's winning. 

      Just to recap: 

      Dx 22 years ago 

      Symptoms became worse 2 years ago

      Low sodium diet 1,500 

      Betahistine 4x's a day (96mg daily)

      Hx of of steroid injections that were unsuccessful

      Diuretic 12.5 mg daily 

      Extensive vestibular testing with an audiologist recently. Rehab was never brought up. 

       

    • tanney
      tanney Ronda_5

      Posted

      Hi again Ronda.  Three thoughts.....

      1.  12.5mg of diuretic is quite low.  I take 50mg/day for my bilateral MD.  Some patients take 75mg to pull fluid from inner ear.  If you do increase dosage be aware of your kidney function....make sure you have blood tests twice/year.

      2.  You mention audiologist but make no mention of a neurotologlist.  Have you been seen by one or not?  If not, that should be your next step.  A neurotologlist is an ENT doctor that has sub specialty in inner ear diseases and vestibular problems.

      3.  Regarding Gentamicin injections....I had this procedure about 40 years ago when it was relatively new.  Gentamicin is an antibiotic which destroys the balance nerve in the affected ear.  Once this nerve is eliminated, vertigo usually ceases, too....not in all cases but the vast majority.  In my case vertigo stopped within  a week of the procedure and never returned!  One of the side effects of Gentamicin is the possibility of hearing loss.  In my case I had absolutely NO hearing loss following the procedure and in fact my hearing in that ear today is quite good....after 40 years. The downside of Gentamicin is the loss of the balance nerve in affected ear.  But as long as you still have one good ear the balance nerve of that ear will assume responsibility (along with eyes) for restoring your normal balance.  This usually takes a couple weeks.  In my case I do not recall ever having balance difficulty after the procedure.  Gentamicin is a good option for MD patients that have uncontrolled frequent episodes of vertigo.  It may not be appropriate protocol for MD patients with infrequent or mild vertigo episodes.  Only you and your doctor can determine if this course is best for you. 

  • mowmow
    mowmow Ronda_5

    Posted

    Hi Rhonda, I had the surgery where they put in a stint in 2007. I was having vertigo everyday! It works great,I do still have some dizziness! I did try the injections first! I still have to have injections about once a year! Talk to your doctor about the surgery if this doesn't work! Will be praying for you! God bless you!!!

    • Ronda_5
      Ronda_5 mowmow

      Posted

      Thank you for your supportive comments.  I praise the Lord for the good days I have, but honestly there have been more difficult days than good. Do you remember much about your recovery?                                                                        Thank you for taking time to answer my questions. 

      Blessings!

    • Willow4
      Willow4 Ronda_5

      Posted

      I had steroid injections and they are easy.  Little pressure and crackling.  But that really is it.  My dr does it in his office and after it is injected you have to lay for about 30 minuets then your done.  They work- you can get one I believe 4 times a year.  

      Good luck on your decision making, it’s very difficult with a difficult disease. 

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