My Annual Meniere’s Disease Update

vertigo_pic

It’s now been four years since my endolymphatic shunt surgery. I give an update every year for my fellow Meniere’s Disease sufferers, to let them know how things are (still) going.

In 2009 I hooked up with a new doctor in Indianapolis, Jerry House, who has since retired. He was great (after my bad experience with supposedly the best guy in Fort Wayne, who kept giving me prescription after prescription). Dr. House walked me through four surgical options, and said the endolymphatic shunt was the place to start—the least invasive, yet a high success rate. I pocketed the idea, since I was going through one of those unexpected good periods Meniere’s sometimes grants.

But at the beginning of 2010, I went to Honduras, and as soon as the plane got up to altitude out of Chicago, a nystagmus kicked in—eyes scrolling forward. It went away, and full-blown vertigo didn’t overcome me, thank goodness. But the next morning in Honduras, nystagmus hit again, and by the end of the day I was vomiting. It really sucked having this happen in a foreign country. Fortunately, it wasn’t too bad, and I was still able to do what I needed to do.

But the experience convinced me to follow through on the surgery. Upon getting home, Pam and I made another trip to see Dr. House, and we set up a surgery for April 16 (Pam’s an accountant, so we had to wait until the end of tax season).

The surgery and recovery went well. I had a set-back that summer with acute pancreatitis, which threw my whole system off and made me wonder if the shunt surgery was a bust. But Dr. House said my body would adjust, and by October everything had settled down.

Skip ahead to April 2011. I had a vomiting episode…and haven’t had one since. Three years now, and I haven’t vomited. That’s how we Meniere’s people tend to measure time—how long since our last vomiting episode.

Let me give a few updates from the past year about specific aspects of Meniere’s.

  • I’ve had a few minor episodes of nystagmus—one which went on for several minutes, it seemed, but the others very very minor. But though I’m left with a bad headache, I’ve never descended into vertigo.
  • I think the hearing in my left ear (the one affected) continues to deteriorate.
  • There is always some static in my left ear. I don’t much notice it anymore.
  • I still need to watch my sodium and caffeine intake. If I’m “bad,” the noise in my ear increases (it’s reached howling pitch a couple times), and I can tell that a potential vertigo attack is down the road. However, I’ve been using much more salt than I did in my presurgery days (I now salt my fries freely, though I had totally stopped doing that before). I haven’t resumed drinking coffee, but I’ll have a half-cup now and then (don’t want to push it), and most mornings I stop for a chai or a McDonald’s mocha. Moderation is the key. (I’ve never been an alcohol drinker, so that trigger isn’t an issue with me.)
  • I’m no longer worried about flying. Next week I’ll drive to Pennsylvania and back (500 miles each way), a work-related trip, and I have no qualms about that. Before the surgery, I would have been very concerned about a vertigo attack happening while I was on the road.
  • I tend to be unsteady at times; it’s easy for me to lose my balance momentarily. Ladders and stools aren’t my friends.
  • There is always a feeling that vertigo is lurking in the background, eager to come forward. But the shunt seems to be working great to ward off vertigo attacks.

In summary–my experience has been totally satisfying. My doctor told me the things that would NOT happen–like, I wouldn’t get my hearing back, and I couldn’t start pouring on the salt and consuming caffeine again. But in everything else, the best-case scenario has prevailed…for me. As I’ve said before, I feel like I’ve got my life back. Meniere’s is always with me, and the hearing loss is highly annoying, but I pretty much do whatever I want to do.

So yes, I highly recommend the shunt surgery. Experiences differ, as the comments in some of my previous posts show. But it’s a good place to start.


My various posts about the surgery:

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5 Comments to My Annual Meniere’s Disease Update

  1. Frank Wehmeyer

    My Wife has been diagnose with Meniere’s.
    I would like to have any advice that you can give me. I’m in this stage : What Now?? I have to support her 100%, any reading recommendations?
    God Bless.
    Frank.

  2. Woah!! I find the graphic image you have on this page to start me into a spin. I was diagnosed with Meniere’s 2 years go, suffering on and off for about 8 years not knowing what the problem was. I would go to the GP and she would say, oh you got an ear infection, prescribe anti-biotics to me and leave me to my own devices.

    Well, after being taken from work in an ambulance with severe vertigo and non-stop vomitting, I was seen by an ENT. At the time, I was told I had double ear infections, inner and outer, but that I most likely had Menieres.

    I lost the hearing in my left ear overnight! Went back to the ENT at his office and he tested me, 60% hearing loss. Was told yup, you have Menieres.

    Now I am waiting on an MRI and will go from there.

    Thank you for sharing your story and your progress with the Endolymphatic Shunt.

  3. Kim

    I am a 4 year sufferer of Meniers Disease. Mine got so bad that I had to leave the workforce. I just had the endolymphatic shunt surgery just over a week ago. I have found for me that the tinnitus has reduced, hearing has not improved but am experiencing popping in affected ear when there is any pressure on left side. I am looking forward to seeing if I will be able to drive again and become employable again. So far, I have been episode free for a fantastic 8 days. I say that with enthusiasm as I was having attacks several times a week.

  4. Ramaswamy

    I am having constant unsteadiness for the last 5 months and tinnitus and aural fullness in my right ear for the last 3 months. Calorics test done showed a 19% lower balance function in my right ear compared to my left. Currently, there is no hearing loss. Just wanted to know if you have any unsteadiness after the shunt surgery and if you did, how rare it is. I have not developed full blown vertigo with vomiting, but I am thinking of asking my ent about this based on what you have written without waiting for full blown vertigo and hearing loss to set in. I even tried the Dr Richard Gacek protocol of using acyclovir, but that does not seem to have helped me so I am exploring surgical options now.

    • Steve

      vertigo_pic

      It’s now been four years since my endolymphatic shunt surgery. I give an update every year for my fellow Meniere’s Disease sufferers, to let them know how things are (still) going.

      In 2009 I hooked up with a new doctor in Indianapolis, Jerry House, who has since retired. He was great (after my bad experience with supposedly the best guy in Fort Wayne, who kept giving me prescription after prescription). Dr. House walked me through four surgical options, and said the endolymphatic shunt was the place to start—the least invasive, yet a high success rate. I pocketed the idea, since I was going through one of those unexpected good periods Meniere’s sometimes grants.

      But at the beginning of 2010, I went to Honduras, and as soon as the plane got up to altitude out of Chicago, a nystagmus kicked in—eyes scrolling forward. It went away, and full-blown vertigo didn’t overcome me, thank goodness. But the next morning in Honduras, nystagmus hit again, and by the end of the day I was vomiting. It really sucked having this happen in a foreign country. Fortunately, it wasn’t too bad, and I was still able to do what I needed to do.

      But the experience convinced me to follow through on the surgery. Upon getting home, Pam and I made another trip to see Dr. House, and we set up a surgery for April 16 (Pam’s an accountant, so we had to wait until the end of tax season).

      The surgery and recovery went well. I had a set-back that summer with acute pancreatitis, which threw my whole system off and made me wonder if the shunt surgery was a bust. But Dr. House said my body would adjust, and by October everything had settled down.

      Skip ahead to April 2011. I had a vomiting episode…and haven’t had one since. Three years now, and I haven’t vomited. That’s how we Meniere’s people tend to measure time—how long since our last vomiting episode.

      Let me give a few updates from the past year about specific aspects of Meniere’s.

      • I’ve had a few minor episodes of nystagmus—one which went on for several minutes, it seemed, but the others very very minor. But though I’m left with a bad headache, I’ve never descended into vertigo.
      • I think the hearing in my left ear (the one affected) continues to deteriorate.
      • There is always some static in my left ear. I don’t much notice it anymore.
      • I still need to watch my sodium and caffeine intake. If I’m “bad,” the noise in my ear increases (it’s reached howling pitch a couple times), and I can tell that a potential vertigo attack is down the road. However, I’ve been using much more salt than I did in my presurgery days (I now salt my fries freely, though I had totally stopped doing that before). I haven’t resumed drinking coffee, but I’ll have a half-cup now and then (don’t want to push it), and most mornings I stop for a chai or a McDonald’s mocha. Moderation is the key. (I’ve never been an alcohol drinker, so that trigger isn’t an issue with me.)
      • I’m no longer worried about flying. Next week I’ll drive to Pennsylvania and back (500 miles each way), a work-related trip, and I have no qualms about that. Before the surgery, I would have been very concerned about a vertigo attack happening while I was on the road.
      • I tend to be unsteady at times; it’s easy for me to lose my balance momentarily. Ladders and stools aren’t my friends.
      • There is always a feeling that vertigo is lurking in the background, eager to come forward. But the shunt seems to be working great to ward off vertigo attacks.

      In summary–my experience has been totally satisfying. My doctor told me the things that would NOT happen–like, I wouldn’t get my hearing back, and I couldn’t start pouring on the salt and consuming caffeine again. But in everything else, the best-case scenario has prevailed…for me. As I’ve said before, I feel like I’ve got my life back. Meniere’s is always with me, and the hearing loss is highly annoying, but I pretty much do whatever I want to do.

      So yes, I highly recommend the shunt surgery. Experiences differ, as the comments in some of my previous posts show. But it’s a good place to start.


      My various posts about the surgery:

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