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Endolymphatic Sac Decompression - Recovery

Posted , 9 users are following.

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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  • lillian44812
    lillian44812 Ronda_5

    Posted

    Hi Ronda. I totally understand your feelings as I have been experiencing the same thing myself to the point of depression and not wanting to do anything for fear of an attack. I'm just going to start betahistine treatments but if they are not successful I will be looking at other options: stint, gentamycin, or other treatment. I have almost lost all the hearing in my left year. I'm glad to hear others' experiences to help inform any decisions I need to make. I'm glad you asked this question. My thoughts and prayers are with you and everyone else.

    • Ronda_5
      Ronda_5 lillian44812

      Posted

      I'm thankful for this forum to voice our experiences, seek refuge and counsel. What works for one of us, may not be the answer for the other. I will tell you that when I started betahistine (I'm still on it) I felt like I had a new lease on life. I was symptom free for 2 months. Unforunately my symptoms returned. This week I've had 4 episodes of vertigo. They come on very fast and will sometimes cause me to drop to the floor to get my barrings. However, the intensity and length of the attack is less since I started on betahistine. This again, is only my experience. 

      I'm scheduled for surgery May 1st. As of now, I'm proceeding with the surgery. I pray that you find a treatment that is effective for you. 

  • lillian44812
    lillian44812 Ronda_5

    Posted

    Hi again. Forgot to add I have had the steroid shots and the last 2 made my vertigo worse (I've had 22 episodes since having the last shot - lasting from a few seconds to 3 hours and always accompanied with either a nauseated feeling or full-blown nausea). My first shot in November was very affective. The last shot was in February. I've also used diazapam to alleviate symptoms, but while they helped, they did not prevent the attacks. And I was very fearful of getting addicted so really did not want to take them. I've been prescribed prenisone but it raised my blood pressure so high, it was at the point of a heart attack or stroke. Meclizine has helped some, but again has not prevented spells.  I've been on a low salt diet since March. Not sure if this helps or not. I know the continuous fatigue and fear is very draining and I pray you and everyone else with this crazy condition find something to bring their lives back to normality.

     

  • Questor
    Questor Ronda_5

    Posted

    I encourage all who suffer from Menieres please take the time to watch the u-tube videos by Dr Michael Burcon from Grand Rapids Michigan.He is the only Dr I have seen who has done actual research on this disease. I now see an Upper Cervical Chiropractor regularly and have only had two episodes of vertigo in the last 10 months. I work,, drive my car and take beta-histamine every day. Please feel free to ask other questions if interested. Just watch and consider. Good luck!

     

    • marshallzen
      marshallzen Questor

      Posted

      I am currently a patient of Dr Burcon. In fact I had my 5th treatment (of 12) today. Before today he was being very conservative in my treatment and frankly I have been having daily attacks. Today he got more aggressive and it seems to have helped. I’m going to give it the full 12 sessions and if it doesn’t work I’m opting for ESD. Have tried ear shots, beta histine, 80 mg diuretic, meditation ( which really helps when in an attack and you need to calm down ) but the symptoms are getting worse. Since I am a performer, I can’t work like this. I’m hoping the ESD is the answer if Dr Burcon strikes out.
    • Ronda_5
      Ronda_5 marshallzen

      Posted

      I had ESD sx 8 weeks ago. I finally have my life back. I had one small episode of vertigo a week post sx (which I was told would likely happen). I had my sx on a Tuesday and took a week off of work. You'll definitely need to take some time off to heal. I've suffered from MD for 20+ years. I wish I would've had the sx years ago. I have not stopped the betahistine or 25 mg diuretic, but I do have plans to slowly wean off. I wish you the best of luck!

    • sarah87228
      sarah87228 Ronda_5

      Posted

      Hi out of curiosity did you have the betahistine first and the diuretic added afterwards? If so did it improve anything at all? 

      I’m currently on betahistine, had to lower the dosage as the roaring in my ears was unbearable. Need something to be done ASAP, being a single parent and only ever being able to do the school run once a week is becoming ridiculous after a year. 

      Thank you 

    • Ronda_5
      Ronda_5 sarah87228

      Posted

      I did both prior to the sx and confined to be on them. My balance is significantly better. I now am able to walk every morning. It's very important that you don't stop moving!!! You're ears, and eyes both communicate to your brain. It's important to do things purposefully to improve your balance. I read a book called the Meiner's Man and the astronaut. I bought it on Amazon. It' helped me a lot! Best wishes!

    • sarah87228
      sarah87228 Questor

      Posted

      Hi there. 

      Do you feel this is largely due to the chiropractor? 

      It’s great you feel so good most of the time, it gives me hope 😊

  • benjamin80326
    benjamin80326 Ronda_5

    Posted

    I had endolymphatic sac decompression three years ago.  Recovery was quick.  Little or no pain behind the ear, showered the next day and went without vertigo for two years.  Vertigo reappeared last year and have been on gentamicin for the past few months, hoping that'll kick in.  My younger brother had the decompression many years ago for his vertigo and has never had an episode.  Good luck to you!

    • sarah87228
      sarah87228 benjamin80326

      Posted

      Hi how quickly did your balance return after the surgery? 

      I have another appointment in September (which is too far away in my opinion) and want to go prepared 

      Thanks 

    • benjamin80326
      benjamin80326 sarah87228

      Posted

      As I mentioned previously recovery was quick and I experienced no balance problems.  It's not until I got the gentamicin shots that my balance has been off.  I go to therapy once a week, which has been of some help.  I have another appointment in a couple of weeks and I'm actually hopeful that my doctor will recommend labrynthectomy as I'm tired of going on with the fear of a possibly having another episode.  I think our doctors deliberately space out our appointments to truly make assessments during the space of time.  Good luck, Sarah.

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