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Health ’ Category
Sunday, March 2nd, 2014
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.
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Saturday, February 1st, 2014
I’m in the process of creating a more optimistic, upbeat post but couldn’t get started with that until I vented about my ear issues again. I’ll pour my heart out here and then move on to more positive things. Last week I wrote about my ear surgery 10 days ago and explained that the surgery was only partially successful. My doctor was able to drill out and remove the bone filler (to which I was having an allergic reaction). Still, he wasn’t able to see well enough to proceed any farther. There was too much bad tissue, swelling and so forth. He felt it was too risky to continue and decided to pull out and re-assess. He doesn’t know whether my problems are due to the dehiscence (fancy word for hole) in my horizontal semi-circular canal or from the titanium prosthesis he put in place of my stapes or a combination of both.
So the symptoms I have are the same as they were before this most recent surgery. Right now, I am extremely sensitive to noise and even my own voice (sound makes my vision blur!); my balance is out of whack (each time I take a step everything jumps up and down); I have very loud pulsating in my ear, often times the SHHhing noise is accompanied by jingle bell noises in my head; I get dizzy and sea sick when I turn my head or nod; plus I get ear aches and head aches as my brain tries to deal with all of this! Oh–and you know what? When I heard that people with this medical condition can hear sound through their bones, I had to find a tuning fork and find out. Sure enough, when I place the tuning fork on my ankle bone or hip bone I can hear that pitch in my head!! That’s not a useful parlor trick, though, since no one else around you is terribly impressed by that!!
Obviously, I’m glad to have a doctor who is careful with my hearing and my future. But I was definitely left with lots of questions on how to get me to a place where I’m living life normally again. I saw my doctor this past Monday and we’re back to “wait-and-see” as swelling subsides in my ear and he tries to figure out the next step…
Will he try to remove the prosthesis (bone) that he placed in there last October? If so, will that make a difference to the dehiscence (hole) in my semi-circular canal? If he takes the drastic measure of “plugging the semi-circular canal” I will go deaf in that ear (permanently) and I will have debilitating vertigo for at least a month. What I have now is tolerable… most of the time, I guess. Well, unless you catch me at a bad time when I feel like I can’t stand this for five more minutes let alone three more months.
In some ways, I’ve had to whittle down life into the bit-sized chunks I can tolerate. Since we love homeschooling, I reserve most of my energy for that. And since I love writing, there’s no question about continuing to write and share here on the blog. It’s a huge positive/plus in my life now that I’m more house-bound. But to make it through the year, I’ve had to resign or pull back from various volunteer positions I was holding. Honestly, I don’t feel much guilt about that because life is just too rough (medically).
Whew–well, I feel like I’ve vented enough about all my problems. Now I’m going to pour some energy into a positive post!!
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Wednesday, January 22nd, 2014
Just a quick update about my ear surgery on Monday. How’s this for a new fashion look?!
The good news was that my doctor was able to remove all the bone filler (which I seemed to be having an allergic reaction to from the surgery in October). Unfortunately, the bad news was that once he got into the inner ear area it looked so bad that my doctor simply wasn’t able to do anything about the “dehiscence.” That’s a fancy word for “hole.” He said it was just too risky. The hole I have is in the horizontal semi-circular canal which is where you process sound and what regulates your balance system. And, since he wasn’t able to do anything to fix it during this surgery, most of my symptoms will remain the same:
- pulsating — extremely loud SHHhhhhing noises in my ear
- balance issues
- loud noises making me dizzy and/or making my vision blur (even my own voice making me dizzy)
- vision problems (having tunnel vision sort of and being overwhelmed in grocery stories, etc. when I try to look around–just sensory overload)
Ack! I’m not looking forward to another few months of that!! But, I know I can get through it… til the next surgery, I guess. What I have is extremely rare (and was only discovered in 1998). At least they know what it is now. How lucky I am!
I was/still am VERY happy that I came out of surgery okay! I have a history of coming out and throwing up for several hours. So, YAY for that! I’m a little sore and am taking it easy, but with family and friends helping hold down the fort, I’m/we’re doing really well.
That’s about it for today. Back to reading and sitting quietly!
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Saturday, November 9th, 2013
Have you ever spun around on a swing or something and when you get off you feel dizzy, can’t focus your eyes, feel out of balance and sick to your stomach? That’s what life has been like for me for over a week. It’s a complication of my ear surgery from three weeks ago. It has made life very tough. It has been difficult to walk straight. The ceiling and walls tend to jump around and move. I can’t bend over to pick things up. It’s hard to read and concentrate. I can’t drive. I feel woozy when I move my head back-and-forth or side-to-side. Um, yes you heard that right–virtually anyway I move my head makes the world spin!
It has also been difficult to keep my mind on things. I read that suffering from a type of forgetfulness and confusion that is common with this condition. This is due to the brain’s heightened struggle at trying to maintain balance on its own. Ugh!
I have had to ask for help much more than I am used to. I can’t go grocery shopping or drop the kids off at their activities. My friends have come to pick up or drop off the kids. Hubby has had to go into work late so he could drive me to-and-from the doctors and to vote.
So how did all this come about? Well, I wrote a post a couple weeks ago about my ear surgery. There were complications during the surgery and the surgery itself took a lot longer than they expected. Then when I was in the recovery area, I was violently ill, nauseous, and dizzy. I couldn’t go home and was admitted and spent an extra day in the hospital.
After the surgery, my in-laws were here to hold down the fort. I didn’t feel great and spent a lot of time sitting and/or sleeping. Even if I did get up for part of the day, by 2pm or so I was worn out, had earaches, and just generally felt bad and had little appetite. In fact, during those 2 1/2 weeks or so I lost 10 pounds. The doctor kept saying I’d be just fine by 2 weeks, so I just assumed I’d be getting better. My in-laws stayed an extra 4 days and then had to head back to Missouri. I started doing a bit more with the kids, but then last week I really started suffering from a lot of balance and dizziness issues. I couldn’t bend down and even walking made me feel like I was going to tip over.
One of my closest friends happens to be a vestibular therapist and she’s the one who started putting the pieces together that I’m having vestibular issues (a rare complication from ear surgery). I checked positive for something called BPPV — which is when crystals in your ear that deal with balance and your position in space get knocked out of place and float around (which gives false signals to your brain, so that your eyes dart up and down as they try to focus).The crystals probably were knocked loose during the surgery because of all the drilling they did (the surgery was longer and more difficult than they had initially thought it would be.) As I moved around more trying to get “back to normal” it stirred things up and made me feel terrible.
I’ve been back to the doctor every four or five days since the surgery. The past couple of visits he’s been trying to do procedures to help put those crystals back in place. Those crystals can fall out of any of the three canals (in the picture below) in your inner ear. But unfortunately for me, it seem that the crystals have fallen out from at least two of the canals (that is also pretty rare, usually crystals just fall out of one canal or another).
What you do to get better is tilt your head in different directions trying to get those crystals back where they belong. (Kind of like a maze with your head!) I’m nowhere near as bad as I was back last Saturday when I was dry-heaving and couldn’t do anything but sit on the couch trying not to move my head at all, but I still can’t drive and am pretty unsteady on my feet (and all those other things I was talking about).
So, the great news is that this is not something that requires more surgery, but the bad news is that it takes time to get those crystals back in place where they need to be.
It hasn’t brought homeschooling to a stand-still, but the kids have definitely had to work more independently and we’re moving through things at a much (much, much) slower pace. And it’s why we love homeschooling — it’s flexible and we can adjust when times (like this) require it!
P.S. — I wrote this a couple of days ago. It’s now Saturday morning. I have improved steadily the past couple of days… It is SUCH a relief! I’m still having to move slow and have trouble focusing my eyes when I move quickly, but I can walk without feeling like I’m going to tip over!
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Saturday, July 13th, 2013
Here in the U.S. we hear about the importance of staying out of the sun during peak hours and using sun screen. Over in Australia, there was a HUGE campaign to get people to protect themselves from the sun. ”Slip, Slop, Slap” was an advertisement we saw ALL the time on TV. Slip on a shirt, slop on the sunscreen, slap on a hat. The kids in our small town had to have a hat to be allowed to play outside at recess.
Here are a few pictures of the kids from back then… and you can see we were all wearing hats (and sunscreen)! (In the lower right picture, we’re all wearing hats with fly nets because there were hundreds upon hundreds of flies there).
I saw the power of the sun myself when I left some paper and a stack of books on the back porch while I went inside to get a drink. When I came back a while later, I noticed that the paper had yellowed in the area that was not covered by the book! Gulp! Hubby and I were very, very careful with the kids. They wore full-body swim suits as babies and toddlers that covered their legs and arms fully. They were doused with sunscreen. They wore sunnies to protect their eyes. They always wore a hat at the playground and out and about.
Even Hubby and I were pretty good about wearing a hat and sunscreen… but I was outdoorsy and a runner and I often didn’t think about or didn’t bother putting sunscreen on my legs when I went out for a run or mountain bike ride.
A couple of years ago, I noticed a couple of brown spots on my lower legs. They were small, the size of freckles or so. They’ve slowly been growing and now they are the size of a pencil eraser.
Recently a friend of mine looked at them and said, “Wow, you’d better get those checked out.” She asked if I knew the ABCs of skin cancer. I didn’t.
The blotches on my lower legs were asymmetrical and the borders weren’t all even. And while there wasn’t a huge difference in color, if I looked closely enough I could see slightly different shades of brown. I decided to make an appointment to see a dermatologist. I had to wait for 5 weeks before I could see him.
In the meantime, I talked with friends about my worry. It seemed that everyone I knew had a story to tell. My runner-friend (who had spent a lot of time tanning at the beach as a teenager) had skin cancer cut off her chest. Another friend said all of her older relatives seemed to have had skin cancer cut out from time-to-time. Another friend had a questionable spot removed from her hip.
The waiting was hard. I read online that malignant skin cancer tends to be most prevalent on the lower legs for women and on the torso for men. Yikes — another strike against me.
In the end, my story has a good ending… the spots I have were caused by sun damage, but luckily they are nothing to worry about.
So, now when I’m being incredibly careful with the kids… I’m going to be sure to take the extra time to slather up myself… including my legs!!
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