My Debilitating Medical Problems and Crazy Symptoms

This note made me choke up the other day. ED brought it along with breakfast one morning when I had fallen back asleep on the couch:

This blog has been an incredible outlet for me the past couple of months because I have had some debilitating medical problems — all ear related.  I’ve really tried not to pour out my woes too much on the blog, but life has been extremely difficult for me. In fact, for the past six weeks I have been unable to drive; I am unsteady and have vision problems when I turn/move my head. And, because of my intense, horrible sensitivity to noise I haven’t been able to leave the house much.  Here’s a good example, this morning when I was eating toast, the noise of the crunching made my head reverberate and spin and was almost too much to bear.

Some of you probably have read through my saga, so I’ll try to be brief…

I had surgery in October to reconstruct my middle ear. I had surgery as a child that left my ear canal wider than normal. Since I kept getting ear infections, my doctor wanted to fill in that area with bone filler. And, while he was in there, he fixed up the inner ear bones (which had eroded due to ear infections as a child) and he put in a titanium prosthesis.

The surgery went well, but my reactions to it didn’t. I turned out to be allergic to the bone filler.  Plus, all the drilling to clear and clean up the middle ear area lead to a horrendous case of vertigo (called BPPV) which lasted for 2 weeks in November.  And, after that resolved, I still had a long, crazy array of symptoms and problems (which I’ll explain in a sec.)

I had a CAT scan in January that revealed that I had a dehiscence (hole) in my semicircular canal.

So, on January 20th my doctor went back in and removed all the bone filler that had been placed in my ear in October.  But, with all the swelling and granulation he could not proceed any farther. He really couldn’t see the horizontal semicircular canal (to address the dehiscence/hole) nor could he see the prosthesis he had placed in October.

Since the second surgery my symptoms have become progressively worse…

• When I move my head from side to side or up and down, things go blurry until I stop moving my head. I feel a bit sea-sick. Even the movement of a car going over a crack or pothole makes my eyes blur. That’s why I can’t drive.
• I have horrible ear noises (called tinnitus), but it’s different from the high pitched noise I heard from time to time in the past.  Much of the past six weeks I have had a drilling noise and drilling sensation in my ear.  I’ve described it as a pencil drill… It’s as if an engraver is stuck in my head. I feel like something is vibrating in there.  For a about a week, that noise receded and was replaced by jingle bells. That was MUCH more pleasant. But unfortunately, last weekend I did too much (I went outside to enjoy the weather) and paid for it dearly. The drilling noise is back and I’ve really been suffering this past week.
• When my ear is drilling and making these incredibly LOUD noises I often can’t sleep. I’ve gotten up in the middle of the night more times than I can remember. This past week I was up somewhere between 3am and 5am… That’s never been normal for me.
• I have a lot of pressure in my head.
• My balance system is off. When I walk or take a step, things jump out of place. I’ll often have a feeling of “whoopsy” and have do quickly adjust so I don’t fall… I generally feel unsteady.
• Any noise makes me cringe… it’s hard to explain, but noise can make my eyes go blurry and out of focus.
• My own voice is incredibly loud and it too causes my head to go fuzzy, my eyes to blur.
• I am sensitive to my own noises… When I am in a quiet room, I can hear my eyes blink. If I knock lightly on my knee with my knuckles or if I place a tuning fork on my ankle I can hear that directly in my ear!
• If I stay still and don’t move (i.e. sitting at a computer!), things aren’t as bad, but the moment I start moving around, turning my head even slightly I feel bad.

How have I made it through?  Well, I have this incredible network of friends who have helped our family.  I had various friends who helped drive the kids to all of their activities – sports, scouts, rehearsals, etc.  We have had lots of people who have brought us meals.  Hubby has done all the shopping.  My kids have been sweet and helpful.  Plus, we’ve had to shift things around a bit in our homeschool.  I had a really great science unit all planned out, but had to put that on the back burner and replaced it with something more sedentary (a unit on China which you’ll hear more about in the upcoming weeks.)  The kids have learned to do a lot of things independently and have been really lovely about pitching in to help.

And of course, I’ve had to give up everything–and I mean everything outside the house.  I can’t sing or play music.  I’ve had to step back from my board positions. I haven’t been able to go to ED’s Daisy (Girl Scout) meetings (where I am a co-leader). As I said above, the only things that are still going well are homeschooling and writing.  If I worked outside the home, I would have had to go on a leave of absence… disability or whatever.  Crazy, huh?

So what’s the game plan?  This next Tuesday (March 4) I’m having a third surgery. My doctor is going to remove the prosthesis that he put in back in October with the hope that that will stop the sound from being amplified so much.  I’m hopeful that this will ease all the symptoms and life will get back to normal for me.  If it doesn’t… well it’s hard for me to even contemplate that, but I will have to have a fourth surgery to “plug” the semi-circular canal.  From what I understand, though, I would suffer from 4 or 5 weeks of horrendous vertigo. Someone who went through that had to be in bed basically not moving. I’m not really even able to think about that or how we would get through that.

In all this, we started a unit on poetry. I’ve never written poetry before and decided to try my hand during our writing workshop time:

The jingling, swishing, zinging,
pulsating in my ear
Will it go on forever?
that is what I fear.
Tilting, leaning, whirling
Will I stumble? Will I fall?
Blurry, crazy jumping
My eyes can’t take it all.
It’s torture you can imagine
if you stick a drill deep in your ear…
spin yourself round twenty times
and walk from there to here.
This is a journey of survival
til the next time I’m put under
To take out the prosthesis
so I no longer hear this thunder!

And a more free form try…

I went in blissfully unaware
of all the troubles to follow
the infection that took hold
oozing, swelling, pus-ing
deep within my ear

I went in blissfully unaware
of the strange changes to follow
sounds that caused my head to resonate
My own voice
grating, sizzling, bouncing
deep within my ear

I went in blissfully unaware
of all the suffering to follow
not able to walk or drive
my head out of balance
swishing, chiming, zinging
deep within my ear

I went in blissfully unaware
of all the caring to follow
friends bringing meals
driving the kids
caring, sharing, helping
from deep within their hearts

I’ve been daydreaming a lot about the trips we’ll take and the camping, hiking, running and biking we’ll do together when I’m better. I’m even looking forward to just being able to go into the grocery store again. I’m definitely ready to feel normal again!

If you have made it to the end of this very long post…thanks for bearing with me and letting me pour my heart out.  It has been a very rough winter, that’s for sure. I’m hoping, hoping that Tuesday’s ear surgery will fix me up and bring me back to normal.

My other ear posts:

I doubt too many people will want to delve into much detail, but there was someone who had complications to his ear surgery and happened upon one of my posts. Since others might be looking for stories about superior semi-circular canal dehiscence, BPPV, vertigo or some of the things I’ve gone through the past 8 months I thought I’d paste in links to my other posts.   I didn’t realize how many posts I’ve written about all this… it sure has been a loooooong journey.

Ear Surgery #5 – Trying to Resolve my Noise Sensitivity, Autophony, Balance Issues and More (June 3)

In Crisis, Lies Opportunity for Growth (March 27)

My 4th Ear Surgery (March 18)

My Debilitating Medical Problems and Crazy Symptoms (March 2) – Just prior to my 3rd surgery to remove the prosthesis.

My Ear is Broken – (Feb. 1) Post 2nd surgery, which was only partly successful… and as my symptoms worsened. This explains (with pictures) what’s wrong medically.

Good News, Bad News About My Ear Surgery (Jan. 22)

Mom Down! Why I’m in Surgery Today (Jan. 20 my 2nd surgery) — Surgery to remove the bone filler because I seem to be allergic to the calcium phosphate.

Self-Reflection Questions for New Years (Jan. 2014) I talked about the struggles of dealing with all of my ear issues

Living with Dizziness, Vertigo and Balance Issues (Nov. 9) — After my October surgery when I came down with BPPV, a horrible, horrible case of vertigo… when the little crystals in your ear fall out of place and make the walls spin and makes you incredibly nauseous.

A Rough Week – When None of the Trivial Things Matter and Only the Trivial Things Matter Post-surgery post from my first (of 5) surgery about how great the kids were, the support I got and all that!

My New Vocabulary Word – Cholesteatoma – This was a successful surgery on my right ear… not related to all the drama with my left ear and the 5 surgeries that followed. Jan. 2012, when I found out I need surgery on my right ear. The other posts (mentioned above) were all the recent surgery on my left ear.