Search Results for: endolymphatic

Now Proud Owner of an Endolymphatic Shunt

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Jordi helps me display my big bandage.

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Jordi and Molly kept me company throughout the night (click to enlarge).

On April 16, I had an endolymphatic shunt placed behind my left ear. The operation was done by Dr. Jerry House at the Carmel Surgery Center in Indianapolis (by St. Vincent’s Hospital on Meridian, just a couple miles north of the I-465 bypass).

The surgery was done at 2 p.m. and lasted about 70 minutes. Everything went great. We were on the road back home to Fort Wayne about 4:45. Hopefully, the operation will eliminate most of the vertigo and other symptoms of Meniere’s Disease, which I’ve battled since around 2003.

Thus far, I’ve been spared three common side-effects:

  • The operation can trigger severe nausea and vertigo which can last a couple weeks. I’ve had zero nausea.
  • The ear, or whole side of the face, can be puffed out significantly. I have very little swelling.
  • I was warned that there can be significant pain the first day or two. I’m taking Vicodin, but I’m not sure I need to. The discomfort is minimal.

I came home with a big bandage, which we removed Saturday morning. We had to remove the left arm of my glasses in order to fit them on around the bandage.

I spent the evening on the couch in the living room, alternating between dozing and reading Robert Parker’s “Stranger in Paradise.” Since it was plenty comfy, I just stayed there throughout the night. Besides, my sleep patterns were all messed up. I ended up watching “Bangkok Dangerous,” a Nicholas Cage movie, in the early morning hours. Pretty good movie.

The symptoms of Meniere’s Disease started around 2003, though it was a couple years before it was diagnosed. Meniere’s causes frequent vertigo and hearing loss. It only affects my left ear; I’ve lost about 60% of my hearing in that ear and have tinnitus, a constant background roar, which I’ve learned to not really notice.

There is no cure for Meniere’s. However, several surgeries can offset the symptoms. The endolymphatic shunt is the least invasive. When pressure builds up, which brings on the vertigo, fluid (only a couple drops) will now be diverted into this shunt and then absorbed into the surrounding membrane. The surgery is 90% successful immediately, and about 70% successful after 3-5 years (2 out of 10 people revert to how they were before the surgery).

I could have had the surgery done here in Fort Wayne. However, I didn’t have confidence in the doctor here. He’s good, and lots of people speak highly of him, but he didn’t seem to pay much attention to things I told him, and kept prescribing more and more pills. I wrote about that experience.

My family doctor, John Carnes, tracked down the name of Jerry House, whom one of his other patients had used. Pam and I immediately liked him. He’s very personable, quickly acknowledged my symptoms as Meniere’s Disease, and pulled out great metaphors to clearly explain what was happening. He’s done zillions of these operations.

When the nurse at the surgical center was prepping me, I asked, “Do you always work with Dr. House?”

She said, “It just depends on who they assign me to. But when we get assigned to Dr. House, we know it’s going to be a good day.”

She then sang further praises–he was kind, considerate, professional, and was always the same. “With some doctors, you’re not sure what you’ll get that day.”


My various posts about the surgery:

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Meniere’s Shunt Surgery: Six Year Update

April 16, 2010, is when I had the endolymphatic shunt surgery for my Meniere’s disease, which had been tormenting me since around 2004.

Another year has gone by without an attack of any kind–no nystagmus, no vomiting. I definitely have my life back.

A couple weeks ago, I did have a very minor episode, which I can’t really explain. I woke up feeling a bit off, kind of like I used to feel constantly before the surgery. I felt like I was heading toward vomiting, with some minor dizziness and other symptoms. I endured it through the morning at work, but it wasn’t getting any better. So I headed home, fed the cats, and went to bed. That took care of it. No repeat.

Usually there’s a trigger–caffeine, sodium stress, alcohol. I don’t drink alcohol, and none of the others seemed like an issue. So I’m puzzled. However, it was minor, and it went away and hasn’t come back.

That’s the worst I experienced during the whole past year. For those of you who suffer from Meniere’s–you wish you could be so lucky.

As I say every year, I highly recommend the shunt surgery. It’s the least invasive remedy and has the highest success rate.

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My Annual Meniere’s Disease Update

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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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Miniere’s Disease and the Barf Update

doenca2It has now been two years since I vomited. Sorry for the mental images. But that’s how we Miniere’s Disease sufferers measure progress. I’ve struggled with Miniere’s since 2004, and for much of that time, recurring vertigo would cause a vomiting episode (or more likely, a series of them) at least once a quarter.

I’d be okay for a while. And then I’d not be okay. You get so you can read your body, and know when it’s coming back in force. You wake up in the morning and just know, “Probably around noon, it’s gonna hit me hard.”

But my life changed on April 16, 2010, when I had an endolymphatic shunt surgically installed behind my left ear. The first year saw definite improvement, but a bout with acute pancreatitis threw my body off, and I still had some of the aforesaid episodes. But the last one occurred in April 2011.

April 2011 was also my last serious episode of nystagmus, where the world suddenly starts spinning and you’re nonfunctional for about ten seconds or so. For me, a vomiting episode is often a delayed reaction from a nystagmus episode. Not always, but often. I’ve had a couple minor episodes of nystagmus that stopped pretty quickly, and could usually be attributed to excessive sodium intake. But very minor.

Anyways, I give credit to the endolymphatic shunt. I can almost feel it kick in sometimes, taking in ear fluid before it triggers vertigo.

I’ve posted about the shunt surgery several times over the years, and I usually get comments or emails from other Miniere’s sufferers who are researching the surgery and discover me through a Google search. There have been a few negative reports, but most are very positive.

There are several surgical options for vertigo sufferers, and the shunt is both the lease invasive and the option with the highest success rate. During the past year I’ve heard from a couple people who have had a shunt in place for up to 20 years, and it seems the shunt was wearing out and they were having the surgery done again. I can live with that. It’s not a bad surgery.

I really feel like I’ve gotten my life back. I drive and fly without worry. I still watch my sodium and caffeine intake (moderation only). Alcohol is another trigger, but I’ve never been a drinker, so that’s not an issue for me. The fourth trigger is stress. You can’t always minimize that; I’m coming up on a period at work when there will be a higher level of stress. But I’ve learned to cope with it.

So, two years and counting.


My various posts about the surgery:

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My Miniere’s Surgery, Two Years Later

Just looking at this photo gives me vertigo.

Exactly two years ago today, I was in Indianapolis preparing for surgery. An endolymphatic shunt was implanted behind my left ear. I don’t know how big it is, what it looks like, what it’s made of, how it works, or exactly where it’s located. But it has changed my life.

I was diagnosed, back around 2004, with Miniere’s Disease. It’s an incurable ailment characterized by vertigo, and it comes and goes. You feel fine for a while–weeks, even months–and then you enter a period in which you feel like you’re swimming in cloudy water. The only thing you can do involves diet–limiting salt, caffeine, and alcohol. A fourth trigger, stress, isn’t always something you can control.

Along with Miniere’s Disease comes vomiting. Your head is spinning, and up comes supper. Happily, I’ve not had a vomiting episode for a whole year. The last time was around the middle of April 2011. Strange that my life is timelined around vomiting episodes, but that’s the way it is. Going a whole year is pretty amazing. Other Miniere’s sufferers would consider that extraordinary.

The endolymphatic shunt simply relieves pressure that builds up in the inner ear. All it takes is to push a drop or two of liquid into the shunt. From there, it is absorbed into the surrounding membrane. That’s as much as I understand and can explain.

Now, I’m in no way “cured.” That’s not gonna happen. I have noise in my left ear all of the time–usually just low-level static, but it can get much louder and more tone-like. My hearing in that ear is probably around 30%. My right ear is fine; Miniere’s normally only affects one ear.

I also watch my salt and caffeine intake. Especially salt. When I’ve had too much salt (like a pizza), the ear noise increases. The difference now is that it doesn’t lead to full-blown vertigo, with consequent vomiting. I can almost sense the shunt kicking in–what would in the past have led to vomiting now magically dissipates.

Not that I don’t experience vertigo. It’s still there, in milder forms. I’m not real steady. When I ride my bike and look behind me, I feel like I’m gonna fall. There are times when things get wavy and wierd, and during the past year I’ve had a couple very minor cases of nystagmus (a quick fluttering of the eyes, which causes the world to spin around you, rendering you nonfunctional for a few seconds).

But, it’s been a huge improvement, and I’m grateful.

Miniere’s isn’t cancer. There are some extreme forms, but for most people (like me), it’s something you can live with. But you need to adjust how you live. Like, no frozen food (which is huge in sodium).

There are several surgical options, including totally removing the inner ear machinery. The endolymphatic shunt is the least invasive, and has a 90% success rate (70% after 3 years‚). For me, it seems to be working. I just hope I’m in that 70%. Another year to go.


My various posts about the surgery:

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My Meniere’s Surgery, One Year Later

After my surgery, with Jordi.

Exactly one year ago, Pam and I were at a surgical center in Carmel, Ind., on the north side of Indianapolis. I had surgery to place (brace yourself) an endolymphatic shunt behind my left ear.  The day after tax season ended for Pam, we got it done. The shunt would alleviate the vertigo symptoms of Meniere’s Disease, which I’d been battling since 2004. Now, when pressure builds up in my ear, a precursor to vertigo, fluid—in this case, only a couple drops, from what I understand—is channeled into the shunt.

Dr. Jerry House, an Indianapolis specialist, performed the surgery. I had been going to a well-regarded specialist in Fort Wayne, but he just kept prescribing more and more pills to take, and wouldn’t agree that I definitely had Meniere’s (which had been diagnosed several years before). I finally left his office with yet another prescription which I never filled.

I learned about Dr. House through my family doctor, and set up an appointment. He’s been around this block many times. After hearing my story and running me through a hearing test, he said, “You have Meniere’s Disease. Here are some things we can do for it.” He then presented the various surgical options, starting with the endolymphatic shunt, which was the least invasive and had a high success rate (90% after the first year, 70% after three years). Even though Dr. House is 90 miles away, Pam and I agree that switching to him was the best thing we could have done.

Because Meniere’s is such an erratic thing—it can go away for months at a time—I figured I wouldn’t have a good handle on how the shunt was working until the end of the year or later. So now it’s been a whole year. My evaluation?

It’s been a big, big help. I very rarely experience vertigo, and when I do, it is much less severe than before. I felt the shunt really starting to work around June. Sometimes I could sense a battle of sorts occurring in my head, with the shunt winning. My body would tell me, “You’re heading for a bad episode in a couple hours.” But it would never materialize.

I entered a period where it seemed like Meniere’s was pretty much gone from my life. Then, in July, I had acute pancreatitis, followed by the removal of my gall bladder. In early August I began experiencing some vertigo, and by the end of September it had gotten pretty bad, with vomiting episodes on consecutive days. I went to see Dr. House. He told me that acute pancreatitis messes up lots of body systems. He was surprised I didn’t have vertigo symptoms during my hospital stay. He said to just give it more time, and my body would get back in balance.

And that’s exactly what happened. Within a couple weeks, I was feeling great. Pam and I went on vacation, and I had no symptoms, and very few since then. From October to March, I was pretty much Meniere’s-free.

Ironically, as this anniversary occurs, I’ve been dealing with some vertigo issues. Two weeks ago, I had two nausea and vomiting episodes, which I just have to sleep off. But I hadn’t experienced that since September.

I’ve also had about 4 episodes of what is called a “nystagmus,” which is a brief attack where the eyes jerk back and forth quickly. I’ve had a few other episodes of nystagmus since September, usually traceable to a salty meal or too much intense work at the computer.

Vision is seriously impaired, but it lasts only 20 seconds or so. But the feeling of vertigo—of imbalance and unsteadiness—is minimized. So it’s nothing severe, nothing I can’t live with. But it’s there, a feeling in my head that things aren’t in balance. I’ve been carefully watching my intake of salt and caffeine.

I know it’ll eventually go away. Meniere’s cycles in and out like that. Dr. House told me, the only predictable thing about Meniere’s is that it’s unpredictable. As I write, it’s been a week since the last nystagmus (which occurred as I was waking up last Sunday morning). In a couple weeks, I’ll probably feel normal.

So again—my evaluation of the endolymphatic shunt surgery?

It’s been a huge help to me, and I have zero regrets about undergoing the surgery. I experience a small fraction of the vertigo I experienced before, and when I do, it is minimized, not nearly as severe. I still need to watch the usual Meniere’s triggers—salt, caffeine, and stress (the fourth trigger, alcohol, is a non-issue with this lifelong abstainer). I get to feeling so good that I sometimes get cocky, indulging a bit in salt and caffeine intake—and for the most part, I’ve gotten away with it. But a smart person, which I can be on occasion, would engage in moderation ALL of the time.


My various posts about the surgery:

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