1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

endolymphatic sac decompression

Discussion in 'Your Living Room' started by snuka, Jan 30, 2018.

  1. I had an endolymphatic sac decompression/mastoidectomy in 2012. This surgery was one of the worst mistakes of my life. My doctor never mentioned that scar tissue could occur, as this this is supposed to be a rare side-effect. Well, it can’t be that rare. It happened to me. Also, I’ve since had a surgical labyrinthectomy, in 2016. Minus the predictable miserable time immediately after surgery, while in the hospital, I found that recovery from the 2012 surgery was much worse. At one point, I became so ill that it looked like I had two black eyes, and the whites of my eyes became TOTALLY blood red, due to throwing up. If my other ear goes south(which it seems like it is, though more slowly) I’ll go straight for the surgical labyrinthectomy. NO WAY will I have another endolymphatic sac surgery!!!
     
  2. snuka

    snuka Member

    40
    1
    8
    Nov 9, 2017
    I did the surgery Monday, and it went very well. I have no problems after the surgery, besides the ear being really swollen and I can't hear much of anything yet. I had no vertigo and was able to go home that night. No side effects that I can tell.
    I've read a lot of nightmares about this surgery, but my experience was the complete opposite.
    It's going to take a couple of months for the swelling to go down and for me to know how much it has helped. I did it to preserve hearing mostly. My Doctor thinks is was the fluid building up and creating pressure, making everything distorted.
    If anyone is thinking about doing this, I highly recommend it.
     
  3. tornadito68

    tornadito68 Member

    88
    0
    6
    Jan 1, 2017
    Great to hear. What's the name of your doctor and what city and state?
    Thanks
     
  4. snuka

    snuka Member

    40
    1
    8
    Nov 9, 2017
    Thanks.
    Dr. Moises Arriaga, (New Orleans, LA. or Mererro, LA).
    He has Youtube videos out if you're interested in hearing him talk about MM.
     
  5. Nyynth

    Nyynth Member

    140
    0
    16
    Apr 3, 2018
    I’d be interested to see the research stating avs have no efficacy, tbh.
     
  6. Nyynth

    Nyynth Member

    140
    0
    16
    Apr 3, 2018
    JOH is practically built on the viral idea. Obviously so are avs. The idea they’ve worked for no one seems almost impossible unless everyone with positive result here and those that have tried JOH are lying or coincidentally improved. I don’t know. That’s a lot of people.
     
  7. Clare

    Clare Active Member

    387
    79
    28
    Mar 31, 2018
    I asked my ENT (otoneurologist) about her view on antiviral treatments when I saw her today. She said there are many viruses floating around in the body. She wasn't aware of published scientific research into a connection between Meniere's and antiviral treatments, in part because the spontaneous remission and active phases make it such a difficult disease to draw conclusions from. She didn't seem to take a position on it one way or another. Regarding allergies, she said she knew of one, and only one, researcher who is convinced of the benefits of treating Meniere's with antihistamines.
     
  8. Nyynth

    Nyynth Member

    140
    0
    16
    Apr 3, 2018
    The only published research I’ve seen indicates improvement, but yeah sporadic remission definitely would make it hard to tell without an actual double-blind study. As far as I know that doesn’t exist.
     
  9. Rebecca

    Rebecca Member

    69
    10
    8
    Jan 19, 2019
    Snuka, it is now May 2020. I was just wondering if you were still on this forum and if so how things are going for you since your surgery. I am suppose to do this June 1st and these stories are scaring me to death!!
     
  10. Cheryl

    Cheryl Active Member

    922
    93
    28
    May 23, 2014
    Rebecca, there have been many members of this forum that have had shunt surgery. For some it was very successful in stopping vertigo for a long period of time. For some, it worked only a short time. For people like me, it was a disaster. Following my shunt surgery in 1993, I was left with profound hearing loss in the operated ear. Not only did it do nothing to stop my vertigo attacks, they became more frequent. I was supposed to stay in the hospital overnight, but ended up being there for four days because I woke up from the surgery with vertigo and it wouldn't stop. I never fully recovered from shunt surgery. Eleven months later I had a VNS to stop the unrelenting vertigo.

    I don't think shunt surgeries are done much, anymore. I was told that they can become clogged, dislodged or become encased in scar tissue, any of which would cause the shunt to stop working.

    I'm sure this wasn't a decision you came to lightly. I wish you all the best and hope you come through it with flying colors!
     
    • Like Like x 1
    • Agree Agree x 1
  11. Tony Wilson

    Tony Wilson Member

    47
    9
    8
    Apr 2, 2019
    Hi Rebecca,
    I had the sac decompression performed last September by Michigan Ear Institute and recovery was a breeze. They don't believe in the shunt just a decompression of the area - I've been vertigo free since and have put some good days together even on bad diet choices. A good doctor is key, when other doctors send their kids to your guy/gal for surgery odds are you've found the right one. Message me for more info or to setup a call. Good luck
     
  12. Mike1519

    Mike1519 New Member

    7
    0
    1
    Jun 12, 2020
    I’ve been dealing with this disease for around 11 years. Lost partial hearing in right ear about 4 years ago. Like most, I can deal with the hearing loss. It’s the vertigo that is so debilitating.

    I’ve tried the steroid shots in the ear as well as oral steroids. Just recently I went through a period of about a month of constant attacks. A few were really bad. So, I went back to the Dr and he recommended we do the sac decompression surgery. He had mentioned this to me in the past year or two as the next step if things didn’t get under control. At this point I was willing to try anything to help.

    So, on June 9 I had the sac decompression surgery done by a Dr at Michigan Ear Institute like Tony. The first day I had some pain but it was gone by the next morning post surgery. I had no vertigo the day of surgery. However, I’ve had vertigo nearly every day since. The attacks haven’t been real bad where they make you sick but they pretty much last all day every day. Some days worst than others but a lot of days with the “fog” effect. Yesterday, was the first full day where I felt normal and gave me a sense of hope. Unfortunately, today I had a set back.

    I’m hoping these daily attacks go away soon. I understand things need to heal. I’m hoping this is all worth it in the long run. Guess time will tell but it hasn’t been fun the past two weeks. I can’t imagine how someone that does manual labor would ever be able to go back to work right after this surgery.

    I’d be interested to hear from others how long post surgery before they were vertigo free (assuming it helped). I read one person on here said 2 weeks. I’m hoping that’s the case for me as well.
     
  13. Mike1519

    Mike1519 New Member

    7
    0
    1
    Jun 12, 2020
    Hi
    Hi Tony - how long post surgery after your sac decompression surgery before you were free of vertigo? I’m 4 weeks post surgery and still having issues. I’ll have one good day and I get my hopes up only to have a bad day. Getting less frequent and less intense but I’m losing my patience. I’ve read one person that said they were fine after 2 weeks. Curious to know how long post surgery it was for you.
     
  14. Tony Wilson

    Tony Wilson Member

    47
    9
    8
    Apr 2, 2019
    Hello - I didn't experience any vertigo after surgery to present day. I still have many days where I feel that "oh s$#t" wave that comes before an attack but its yet to materialize. Overall I'm happy with my decision but I wonder if I should've just went with the laby since I have no balance function and little hearing capacity in the affected ear. I'm holding out hope for the upcoming inner ear drugs coming to market I guess.
     
  15. Mike1519

    Mike1519 New Member

    7
    0
    1
    Jun 12, 2020
    Thanks for the response. I’m just over 6 weeks post surgery and have not gone more than 2 days without an issue. Most issues the last couple weeks have been mild (brain fog) until yesterday where I had the full blown get sick attack. I’m quickly losing hope that this will be successful. In fact I’m second guessing having this done. I had issues before 4 or 5 times a year sometimes for just a couple days. This has been 6 weeks of hell. My Dr won’t give me a time table. He just says everyone is different. I’m losing hope but want to give it a couple more weeks before I figure out plan B. I can’t live with the way things are now for the rest of my life. Hopefully, someone will discover some miracle cure!
     
  16. Mike1519

    Mike1519 New Member

    7
    0
    1
    Jun 12, 2020
    I was also going to ask who your dr is. I had Dr Babu.
     

Share This Page