Tag Archives: hearing loss

Good and Not as Good News

Three and a half weeks post-op, and today was a pretty big day.

I drove myself to physical therapy, then later drove myself (with my mother as chaperone) home from a visit to my surgeon, Dr. Wiet. All told, it was about 30 miles. No significant negative effects to report. It’s good to know I’ll be able to get myself around.

I went for a 1.25 mile walk today. My quads get burny, and my head gets a little bit swimmy, but it’s nothing that I can’t push through. It does make me wonder, though, if running and bike riding are in my future. Both will likely take a long build up of endurance and brain-training before they become possible. The pounding of a run, not to mention the up/down jostle, seems problematic.  I’m also left wondering, as usual, whether the dizziness I feel is from the surgery (which should improve) or from my unrepaired left side (which may not). No way to know yet.

BUT, Dr. Wiet confirmed today that he doesn’t think my left side needs surgery right now, and if it did, it would likely not be a craniotomy. My hearing on the left side is perfectly normal. I’m not willing to risk it without a serious need for surgery because the right side hearing has not improved. I thought it had, but the test results say otherwise. He doesn’t want to hit me with more steroids right now, but instead wants to wait three months before we start hearing aid discussions. The tinnitus is bad. Both my hearing and the ringing are much worse than before surgery, but the doctor reiterated today that he felt I had to do the operation because the dehiscence was so large, and because my tegmen was so compromised, that I was a brain herniation waiting to happen. I get that. But I want to hear, too, or at least not hear this high-pitched cloud of noise all the time. And yet, there is no going back. It is what it is. I seem to be one of the rare few who suffer serious hearing loss from superior canal dehiscence repair.

There are therapies, he says, for the tinnitus. And a couple of options to improve hearing, especially if more hearing comes back over time. All of those options involve hearing aids.

People in the support groups on Facebook have asked me if I think it was worth it. I guess I have to say it’s too early to tell. I don’t know what the final dizziness result is yet, and the hearing, while likely permanently damaged, is still in flux, too. I mean, avoiding a brain hernia is a very good thing, but if it weren’t for that one consideration, I probably would not do it again if I had a second chance. I think I would have tried to live with it longer and not risk my hearing.

Every case is obviously unique and people’s priorities are different. My quality of life was diminished before surgery, but I had reached a liveable plateau. How long that would have lasted is hard to say, and much of it was due to constant therapy and a daily dose of valium. Is that a sustainable lifestyle at 41 years old? I don’t know. Doesn’t matter now.

I do know I’ll be protecting my good left ear in every way possible, and doing all I can to retrain my body and brain to deal with its situation.

Oh — fun fact. Tinnitus is caused by the brain, not the ear. It’s noise the brain creates to fill in for a lack of sound. Crazy, huh? Sometimes, if I try really hard, I can quiet the tinnitus a few degrees by focusing on that ear and simply telling the noise to go away. At least I think I can!

Not that the scar is even close to being my biggest concern right now, but here it is:

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The Perfect Recovery Part III

As I’ve been made to understand it, the vestibular (balance) system is comprised of at least three separate parts. There are the three semicircular canals in either ear – anterior, superior, and posterior – that let the brain know where the head is in space. Then you have the eyes, which do the same visually, and the joints — particularly the ankles, knees and hips, which respond and adjust after the brain has processed that stimuli. The superior canal, which is likely compromised in both of my ears, negates the up/down movement in our vision when we walk and run — or drive a car. It’s like the steadicam system for the eyes. My hope is that the other two canals, and my plastic brain, can learn to adapt to whatever loss these canals have suffered and stabilize my field of vision.

It’s a good idea to not tweak an ankle when you’re trying to recover your sense of balance. I overdid it a bit on my dyna-discs — surprise! — and my now right ankle is out of whack (thanks to probably at least a dozen sprains over 41 years). Given the pressure on that joint to compensate for shaky balance already, it’s another tiny setback. It’ll be fine a few days.

I keep thinking my hearing is getting better in the right hear. I’m noticing sounds more and more, but the constant cloud of high-pitched tinnitus there makes separating sounds from each other very difficult. What I do hear and understand through that ear sounds like the radio voices of Rebel Fleet pilots as they attacked the Death Star in Star Wars. Remember that? Metallic, electric, distorted, and like it’s travelled 10 light years to reach my ear drum.

Follow Up: Good and Bad News

The stitches are out and the scar looks great. The doctor was impressed with my hair growth. Yay for great hair! That’s the good news.

The bad news is that after removing the packing plug from my ear canal, I couldn’t hear. My inner ear is filled with blood and fluid, which contributes to the loss of course, but there is a real chance I might have significant nerve-related hearing loss. The hearing test was honestly frightening and quite disheartening. I couldn’t make out much of anything, so Dr. Wiet ramped up my steroids to Barry Bonds levels. Next step will be draining the ear via myringotomy, which I’ve had a bunch of times during ear infections .

A lot of support group folks say this is par for the course, but I sensed serious concern today in the office and it has me feeling quite uneasy in addition to dizzy. But what can I do other than rest and heal and keep the faith?

I could have had facial paralysis, a stroke, seizure, serious infection, or a host of other issues, but I came out clean on those fronts. I’m wiped out after PT yesterday (and a stupid effort to clear snow and ice off of water drains #moron). So, up and down is how it goes, I guess.

Send me your high-priority optimism readers, and please speak up!

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