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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1 Comment to "My Miniere’s Surgery, Two Years Later"

  1. Scott Vess

    Hi Steve! It has been just over a month since my surgery,and so far I am ok. Did your throat stay sore on the side of you surgery for awhile! Mine has ,and my regular Dr. thinks this may be the reason. It is worrying me a little!

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