Monthly Archives: November 2013

The Little Things

We went to hang out with Isaiah’s sorta-sister Aimee, her husband David, and their son Bodhi for brunch. Bodhi is delightful.

After breakfast I took a nap because my head was hurting. I take a lot of naps. Though they had a spare room with a bed I chose to curl up on the couch and just close my eyes for a bit.

At first Bodhi didn’t get it. He kept saying “Aunt B, come look!” When his mom explained I was napping and suggested he give me a toy to cuddle. He brought me a lion. Then a puppy. Then a bird. Then more toys that I didn’t look at because I just kept my eyes closed as he piled more stuffed animals on.

Aimee tried to tell him to “leave Aunt B alone” and he responded “I’m giving her friends.”

I knew visiting would be exhausting but also very very rewarding. Bodhi’s generosity was so warming. Aimee and David always so loving and kind. It was a great visit.

Some days are tough. Some weeks are tough. Some times I am just waiting for my surgery and hoping for relief.

There’s nothing like a three year old piling snuggly toys on you to make a moment feel over the top and life a lot more than just head pain.

PS: Yes, I am “Aunt B” or “Aunt Bee” and Isaiah is “Uncle Slim.”

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Home Alone

My husband and I are both introverts. Me less so than him, though even that is debatable. One of the things we strive to do to keep our relationship healthy is to give each other “alone at home” time. We are also both geeks. I am a computer programmer with a minor gaming habit and he is a gamer with an intellectual bent. “Gamer” in this instance refers to card games, board games, video games, Dungeons & Dragons (and other RPGs), and just generally games.

Tonight he has gone to our favorite game store, Guardian Games, to play Magic the Gathering. I don’t go as often even when I’m feeling well.

I am home alone. Normally this is a relief. Down time without any people around, not even my awesome fella. Tonight it is not so great.

Alone with my thoughts. Alone with no one to talk to. Not that Isaiah talks much but I talk. He’s a very good listener and when he talks it’s always pretty fantastic. I can ramble and he can pinpoint the positive things to focus on and the wild worries of a difficult mind.

Nineteen days to my surgery. Less than a week to my questions day with the surgeon. A week and a half of work. A major holiday. Some house cleaning. A few happy hours, a couple of lunches. Nineteen days.

The surgeon is going to peal back a flap of skin and cut a two inch square in my skull. I will be dehydrated and pumped full of steroids to make my brain smaller (seriously) so he can lift it out of the way with an object I imagine looks like a shoe horn. Once my brain is out of the way he will check out my cochlea and semicircular canals which all together are about the size of a dime. The key area is my superior semicircular canal which is where the bone thinning is. He will then mix up a special cement made from my own bone dust. He will smear the area with a special gel that will prevent the cement from getting into the porous bone. Then he will slather on the bone cement. Once it’s in place he’ll put everything back as close to how he found it as possible. The two inch square of skull will be latched in place with tiny titanium plates. The flap of skin will be sewn back down with desolving sutures. I will have a crazy groovy scar that will get covered by hair over time.

I will be dizzier, crazier, in more pain, swollen from my head being held in a vice for five hours of surgery, unable to chew, unable to pick up my 10 lbs cats, and hopefully free of weird noises in my ear. Over time, months, the bad stuff will go away and I will turn into a graceful diving, swiming, mountain climbing ballerina with wings. Yeah.

Or I could be partially deaf in one ear. Or my symptoms could change, neither better nor worse. Or or or or.

I really hope I am able to read or do other distracting things during recovery. I know at first it’s going to suck and I am really going to need the distractions. Like tonight. I could really use a distraction tonight. Something more engaging than TV. Some nights it’s just not fun to be home alone.

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Cognative Testing

My surgeon is working with someone studying the before and after effects of brain surgery on cognition. I did two hours of cognative testing today to contribute to this work. Attention span, memory, shapes, definitions, spatial something or other, whatnot, etc. I did ok but it was exhausting. And I’m not fixing typos here.

Other testing to date:

  • A hearing test: passed.
  • VEMP testing: passed.
  • Balance testing: failed.
  • Visual balance testing: failed.
  • Pre-op physical: passed.
  • Pre-op blood tests: passed.

All that’s left is the final pre-op conversation with the surgeon, a haircut (because I want a nice, intential bald spot), and the surgery itself.

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Migraine Fading

I’m still overly sensitive to noises, rather dizzy, and vaguely sick to my stomach but the migraine of total doom has passed. Woohoo!

I spent a little time adding some new pages to this site.

Sometimes when I hear about other people with this same thing I wonder how they do it. How do they drive? How do they walk at anything other than a snail’s pace? How do any of us leave the house? Ever?

Isaiah is making a tapping noise on our patio. I need to go further from it. Bed sounds good. Anyway the typing is hurting my head. Still need super quiet for migraine avoidance.

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Superior Canal Dehiscence Syndrome Symptoms: Auditory

The symptom in the list is Autophony. I’m writing more generally about my auditory symptoms because today is a bad auditory symptom day. Is my typing so loud because I hear it through my fingers or because my hearing is super sensitive? I don’t know.

Noises outside my head cause feedback in my ear, make me dizzy, and sometimes makes my eye see little pulse circles.

Typing is making me sick. I have to stop.

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Thank You Roll Call

Thank you to everyone.  Really. You are all so fantastic. Everyone who reads this blog. Everyone who listens to me say “brain surgery” over and over. Everyone who is being so kind to me. I cannot encompass my thanks with words today.

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Sunday Afternoon

Having a very relaxing day. Breakfast with Pope, a nap, then Pope ended up with a free afternoon so I helped him shop for curtains and he helped me shop without Isaiah.

From the outside, except for really slow walking, my day appears beautiful. Through a certain lens my day was beautiful. Just ignore the horrible stabbing pain in my head and all the annoying noises my ear hears inside my head.

It’s like I live two lives. One is an amazing happy fulfilling marriage in a great apartment with two fantastic cats, a challenging and fun job. My friends and family are over the top amazing. The other is head pain, confusion, inability upon inability, spinning dizziness, fatigue, and the sense that my lists are all incomplete.

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A Whole Week!

I made it through a whole week of work. No doctor days. No sick days. No half days. Not even working from home. Now if only my physical head felt as triumphant as I did.

Haven’t had a headache like this in a while. Light sensitivity is really the big difference. Everything else is just an increase of other symptoms. Louder ear sounds, more high pitched skeeeeeeeeeeeee noises, stabbing pain and dull pain both more, sensitivity to outside sounds is up, irritability, fatigue, etc.

So yeah, I am a happy, miserable success!

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Fidgeting

Lately my thoughts have been fidgeting. I try to focus but everything keeps pacing around this one thought: brain surgery. I feel very repetitive. I think I’ve even written about this before. It’s very hard to focus. Hard to compose posts. What could I write about? Brain surgery. I have three weeks of work left before… brain surgery! I should really make a poster to remind myself to rest and ask for help after… brain surgery. I wonder how much I will be up for while recovering from brain surgery.

I have gratitude that I could write about. Many people to thank for a variety of large and small acts.

I have symptoms, still so many symptoms, I could describe.

Maybe it’s because I’m still going to work and work is exhausting. I really do come home and take a two to three hour nap after work every day. When I wake up for a late dinner my brain feels unsurprisingly fuzzy.

Today I really wanted to post so I’m posting about posting.

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Blah

Do I hear my pulse or pulsile tinnitis? Do I care?

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