Archive for the ‘ Health ’ Category

In Crisis Lies Opportunity for Growth

Thursday, March 27th, 2014

Just over a week ago, I had my fourth ear surgery since October.  I was braced for a tough recovery.  The surgery was a bit more invasive than the one three weeks ago so it was definitely uncomfortable afterwards.

As far as we know the surgery went well. Right now we’re in a long waiting game to see how things settle down.  If you have followed my story, you know that  I have a hole/dehiscence in the horizontal semi-circular canal (in my inner ear). My doctor said it was a bit bigger than he had anticipated and it was closer to the facial nerve than he thought (which made him nervous). He plugged the hole with bits of my own muscle (since I am apparently allergic to bone filler and bone cement).

I was told I would have severe vertigo and the recovery would be long and arduous.  I was braced for the worst; in fact, I was braced for the horrible vertigo I had in November (where all I could do was sit on the couch holding my chin to keep it from moving).  It hasn’t been that bad.  I definitely still have balance/dizziness/vision issues that are not normal, but I have to wonder if things were SO bad all through February that where I am now is better by comparison.

What I wasn’t expecting was the incredibly loud, loud, LOUD noises I’ve had… cicada’s roaring in my ear, swooshing sounds, jingle bells and drilling sounds. At times it has been so loud that I’ve barely been able to hear out of my right (good) ear.  So a pulsating, jingle-bell wielding cloud of cicadas driving through one’s head?!! That’s certainly not normal is it?  Well, I was relieved to hear in my post-op check up that many people experience something like this.

I’ve been trying to do my re-hab exercises (shaking my head no and trying to keep my eyes from sliding off what I’m looking at… and nodding my head yes while looking at a fixed target).  Plus, I’ve been going on walks with the kids and am looking from left to right as we walk.

Most importantly from all this, I feel hopeful…

  • I feel pretty sure that I’ll be able to drive again in another week or so.
  • I’ve been able to be around the family again because I am not as sensitive to noise.
  • I’ve been able to read aloud to the kids again (my own voice isn’t making my cringe).
  • When I go for walks, things (like the trees)  aren’t jumping around as much as they were.

These are all GREAT signs!  I’ve been telling my Hubby how difficult it is not to be completely better… for me this has been five MONTHS of trying to get better… whereas in reality it has only been eight DAYS since this last surgery.

I heard this really great quote that really resonated with me this past week:

There are no guarantees in life… We’ve all heard that a thousand times, but honestly — no one expects the rug to be pulled out from under them.  When the straight-forward ear surgery last October led from complication to complication and things got worse and worse… to the point that I could barely leave my own bedroom — it shook me and my family to the core. But I’ve learned a lot…

  • I love and am GRATEFUL for the life we’re living. We love homeschooling and despite everything have learned a LOT! Some lessons may not have been the ones we had expected to cover. My kids learned about compassion, responsibility, caring, and patience.  They learned the value of being a good friend; they saw first-hand the power people have when they reach out to others. They learned we have to continue on despite our daily challenges.

Other things I’ve learned?

  • I have an incredible support network!
  • It’s okay to cry, but then it’s time to get back up again and continue on.
  • I really love the outdoors and NEED to spend time outside!
  • It’s important to be fit… it is crucial when your body is asked to do more and endure more than you ever expected.
  • I love writing! It’s been an amazing outlet. In fact, I’ve been working on two different book projects.
  • And… I love blogging!
I am expecting good things in the weeks and months to come! Thanks for reading today.
~Liesl

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)
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.
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.

 

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My 4th Ear Surgery Tomorrow

Tuesday, March 18th, 2014

Actually, this is my 11th ear surgery (plus 2 others for other things) if we’re truly counting… but tomorrow is the 4th surgery on my left ear since October.  It’s supposed to be a doozy.

I have been spending a lot of time day dreaming about all the amazing things I’ll do when…

  • I can drive again.
  • I can talk again (without the sound reverberating around my head).
  • I can leave the house (other than to the doctor’s!).
  • I can be around more than one or two people at a time without cringing (because of the noise).
  • I can walk without dizziness.
  • I can sing again.
  • I can turn my head comfortably without things going out of focus.
  • I can go shopping (even grocery shopping sounds fun!)
  • I can be me again.

Life has been very, very difficult and I’ve been writing about all my ear problems ever since my first ear surgery back in October… You can read more here: My debilitating medical problems and crazy symptoms.  The upshot is that I have had three ear surgeries to fix a myriad of problems. (For example, I wound up being allergic to the bone filler that was used in October and we had to drill that out and remove it. And, two weeks ago we removed the prosthesis that was put in there in October (my bone had eroded away as a child.)

None of those surgeries have actually been able to fix the problem I have with one of the semi-circular canals. Those canals are responsible for helping you keep your balance. Because of the dehiscence/hole, my vision goes blurry when I turn my head or bounce (ie. take a step or move up and down in the car.) The problem in my ear not only affects my balance, but is causing sound to be processed incorrectly. I have weird symptoms like being extremely sensitive to noise (despite a huge hearing loss in that ear). I am sensitive to my own voice and can hear lots of sound through my bones (like the strike of my heal on the floor feels like I’m booming on a kettle drum). I have a lot of tinnitus — day and night sounds of drilling or jingle bells or whooooo or shhhhhhh. Yes, it does wake me and keeps me up at night! The entire ordeal has meant that I cannot drive (who wants someone one the road who can’t turn their head without things going out of focus?!). And, much of the time I have to keep away from people…. simply because sound is so overwhelming. Can you imagine?

Thank goodness for my in-laws who have been here for the past 2 1/2 weeks since my third surgery.  I come in and work with the kids for a couple of hours… but otherwise they have been holding down the fort completely. They’ve been my long-term subs as well as our cooks and chauffeurs.  They are unbelievably wonderful and have been keeping our household going!

Tomorrow, I am heading in for a very rare surgery to “plug” the horizontal canal.  It *should* address the noise sensitivity and pressure I feel in my ear… but… the surgery means that I will have horrendous vertigo for 3-5 weeks.  I have heard from people who’ve had a similar surgery on their superior canal that the first 24 hours the vertigo is so bad that you can hardly move without being nauseous and vomiting. Uck. I heard from someone else that they were essentially bed-bound for a month.  Just great, huh? But believe me, I am determined to throw myself into re-hab to retrain my vestibular system and get myself better!

As you can imagine, it has been a challenging period of my life.  But, I really have been spending a lot of time day dreaming about being better… This ordeal has taught me to deeply appreciate my friends and family, has helped me zone in on the things I absolutely LOVE about my life — my family, homeschooling, writing, being outside and being active.  The kids and I have spent hours talking about going hiking, biking, camping and doing the things we love outdoors.

So, that’s about it.  I have posts scheduled for a couple of weeks… and if I feel up to it, then I’ll resume writing and posting and you might not even notice too much of a difference on the blog. But if things are bad, then I’ll need to take time off. I guess we’ll see pretty soon!

Warmly,

Liesl

P.S. The photo above was taken by my Dad, John. That’s quite a contrast to the pictures I shared today of yesterday’s snowfall. We had seven inches (and hopefully that’s the last for this season!)

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)
My 4th Ear Surgery (March 18) – to plug the horizontal semi-circular canal
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.
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.
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My Debilitating Medical Problems and Crazy Symptoms

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.

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)
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.
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.
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My Ear is Broken. Sigh…

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!!

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)
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.
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.
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Good News; Bad News with My Surgery

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
  • dizziness
  • 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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