The day after I got home

I posted this in my support group:

6 days post op. 

I can hear out of my ear, but its distorted. Still exhausted and dizzy. Since I have a cast iron stomach, almost no nausea. Can't open my jaw very far, and still have a lot of pain. Found out that I had no bone above the superior canal, so the resurface was extensive. 

Just got out of hospital yesterday, and they were willing to have me stay if I felt I needed it. 

Will try to get a photo

The photo below was taken on Sept 15, 2013.

Surgery and recovery

I actually slept the night before surgery.  I was a little nervous, but I knew it was what I wanted.

Got there at 7am, wove my way to the Day Surgery area, got my GIGANTIC hospital gown and relaxed for two hours.  I got my IV put in. They got it on the first try! yay!!

Husband stayed with me the entire time. 

I was wheeled down to the surgical area, and then met with my anesthetist, surgeon, and his team.  I found out that there were going to be at least three other surgeons observing, because a surgery like mine only comes around maybe once a year.  

I think that is when I started getting a bit nervous.  And then, I met the nurse who would get me ready to go into the OR.

I cannot remember his name, but he was so nice.  He answered questions, and made me laugh.  The best part - he was Scottish.  I told him he could say anything he wants, just keep talking.  He laughed at me :P

I made sure to tell them that I would like them to tell me what they are doing.  Don't just do it and hope I understand.  They were great!  

I was wheeled into the OR, and then I scootched my way onto the OR table.  They put a pile of flannel out, and told me it just makes it easier to intubate that way.  worked for me!

They put the mask over my face, warned me it would feel like I was smothering, but to breathe normally.  They were right - breathing in was fine, out was tough.  My Scottish nurse made a joke, and off to lala land I went.

I woke up in recovery about 4.5 hours later.  There was a lot of pain, and a lot of meds going into my IV.  

I also distinctly remember my moms hand on my shoulder, letting me know all was well.  (My mother died 9 years ago)

After they took out the arterial line, I was taken to the neurology step down ward.  They were making sure I wasn't leaking anything I shouldn't.  The catheter wasn't much fun either!  After the first night, I was taken to a regular floor, which I was okay with.  Except for the NOISE.

OMG - three people had machines that were beeping like crazy.  After ear surgery - omg.  I just about lost it.  The nurses didn't understand why I kept buzzing for someone to "stop the beeping"... until they did some research on SCDS.  They then were so understanding!

I had two good room-mates, and one that thought she was better than everyone else.  

I saw my surgeon on the Friday after surgery, and he was pretty happy with how I was doing.  The only bad part was that my pain levels were out of control for a while.  For the first few days - I was on percocet every 4 hours. Which is pretty high levels of pain meds.  

I went home on Monday the 16th.

Gearing up for Surgery

I was right, the slating clerk did say she'd have a date for me.

She called me and let me know I was scheduled for Sept 11, 2013 and I had to be there for 8:30am
cool.

I called on the Friday before Labour Day to find out what else I needed, and got some information like where, when, what I needed, etc.  I realized that I had forgotten to ask a few things, and left a message.

I got a call on the Tuesday after labour day telling me that the slating clerk I had been talking to was no longer there so they couldn't tell me much.

I spent Tuesday, Wednesday and Thursday talking with three separate people, and finding out that paperwork was missing from my file and that I needed a CT before surgery.

They emailed me the paperwork, I filled it out and emailed it back.  The CT that I was supposed to have, should have been done before I was even scheduled!  They "fit me in" on Friday the 6th.

I could "hear" the contrast going through the IV - that was weird, for sure!

All finally got worked out, and I was set to go on Sept 11, 2013 at 9:00am.  I had to be there at 7 (I could have waited until later)

*breathe in, breathe out*

So, It's been a while again :P

why?  because I have had nothing to report.

I have no life really... I sit at home and try to do a few things, but usually end up sitting/lying on the couch waiting for the dizziness to pass.

But, I have a small update...

Aug 13th or so I called the slating office (these are the folks that schedule surgery).  My message - hi, it's me again.  Figured I do a monthly check-in and see what's up. or something similar to that


Well, they phoned back on Friday morning before 9am.  I was not 100% awake, so I'm only going by what I remember.

I am pretty sure the clerk said that she was waiting for "the full slating to come in" and that she would be calling me next week to give me a date.

I'll let you know.

Mixed emotions

I got some news today, and I'm really not sure how I feel about it yet.

I've been approved for CPP Disability benefits and the disability tax credit.  They both have slightly different criteria, but the bottom line is that you have to be disabled (not just inconvenienced) to be approved.

I guess it's really hitting home that I'm actually disabled, and this could last for a long time.

Of course, I am planning on being one of the few that surgery is a complete success on :)  but, I guess having a backup plan wouldn't hurt either...

for those keeping track, I am now in month 5 of waiting for surgery. I did the preliminary screening (x-ray, bloodwork, etc) at then end of January 2013.  The surgeons slating office should have received the results by no later than Feb 14 2013.  blech

hurry up office, I want to get on with my life!!!

__________________

the best things in life aren't things....

VEMP results..

This post is a little out of order, but who cares?  Not like many folks are reading this anyway :)




As I thought - I failed the VEMP test.    My decibel thresholds were 55 decibels (DB) on the right and 60DB on the left.   Anything lower than 80DB is considered abnormal.

I honestly think they are lower than that - but it's been a while since I saw the screen and I've been known to be wrong :P

Anyway - my surgeon wasn't all that happy with the results.  He wanted one ear to be worse than the other, so he knew which one to do.   We discussed it and decided on trying the right ear.

I'm waiting for a surgery date - and Dr H said he's going to make a 3D model of my head so he knows where to work and what he's working with for the surgery.


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shhh....not so loud....

Dang!

Wow.

I just haven't been up to posting on here for a while.

I've got a quick update though.

In December 2012 I had another high resolution CT scan.  In January 2013 I got confirmation that I do have bilateral Superior Canal Dehiscence Syndrome.

You can read about it here : Wikipedia Link

My otolaryngologist (what is that? click here) confirmed with me that I wanted to try surgery.  I did confirm it, but was pretty nervous about it.  Especially when he laid out the complications that could happen.

*Cerebral Spinal Fluid leak - fixable? yes... okay....
*Meningitis - treatable, so.. okay
*Deafness in the operated ear - not good, but... okay
*Stroke/blood clots - EEEEK?!?  That doesn't sound good....

and these are just the really bad ones.  There were more, but I can't remember them now.  Story of my life these days...

Anyway - I was given a form and told that I had to have an x-ray, bloodwork, ecg, etc done. Once they had that paperwork, I'd go on a list for surgery and they "planned" to have it done in the next 3 months.

Thinking that the faster I did it - the faster it would go (HA!) I did the stuff right away at the end of January 2013.

It is now May 17, 2013 and I am still waiting for them to call me.  When I called them at the end of the 3 month period, I was told that there was nothing more I could do.  They would call me when my name came up.
Great.  Hurry up and wait. Blech.

I'm still hoping to hear from them soon - but I'm really really glad that I didn't wait to go see HRB.  If I had waited, I wouldn't have been able to see her before she goes to Europe. *sigh*

While I'm ecstatic for her - I'm sad for me.  I'm going to miss her.  But - since we both have Skype, I can at least see her once in a while, even if it's just on a screen.

And that's all I have the energy for.


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waiting for ..........