Monthly Archives: November 2013

Superior Canal Dehiscence Syndrome Symptoms

Symptom list:

  • Autophony – person’s own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear
  • Dizziness/ vertigo/ chronic disequilibrium caused by the dysfunction of the superior semicircular canal
  • Tullio phenomenon – sound-induced vertigo, disequilibrium or dizziness, nystagmus and oscillopsia
  • Pulse-synchronous oscillopsia
  • Hyperacusis – the over-sensitivity to sound
  • Low-frequency conductive hearing loss
  • A feeling of fullness in the affected ear
  • Pulsatile tinnitus
  • Brain fog
  • Fatigue
  • Headache/migraine

I struck out the things I wrote specifically about as far as I can tell. Want to get the descriptions in before December. So…

Pulse-synchronous oscillopsia. Yep, that’s the little dot in my eye that goes ping ping ping or ponk ponk ponk except with a little dot I can see instead of a sound but what’s really the difference between dots and sounds and touches.

Hyperacusis, over sensitivity to sound. Yeah. I think I’ve complained about the sound of my typing. And anything else I hear.

Low-frequency conductive hearing loss. I often wonder if it’s my hearing that’s worse or just the amount of other things I hear that make it harder to hear what’s around me. there you have it.

Fatigue. Yeah. Yeah yeah yeah. Oh yeah.

Headache/migraine. That was what started it all. The quest to find out why my head has been hurting since May of this year.

There. All symptoms written. Sorta. Mostly.

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Thank You Roll Call

Glory brought me a tray for eating in bed with as well as a super comfy pare of stretchy pants. Mayling brought me the most beautiful little herb garden in a pot with thyme, sage and rosemary. Then Glory and Mayling took me out to lunch at Zell’s Cafe. It was fantastic and amazing and I needed a really big nap after.

Sometimes it seems like the happier the day the bigger the resulting nap.

Mom and stepDad came over for dinner and we had wonderful food to go from Cha Cha Cha. I was super tired.

Now that I’m all full of food though I don’t feel as much like napping. I’ve already slept a lot today. So I’m super tired and head achy and awake.

Not really focussed either.

I got a beautiful necklace from Edie, my mother-in-law. And a wreath and wild blueberry jam.

And Staci thought of me. And yesterday was wonderful with Pope and Molly and the Wilson family fantastic. Oooh and Kirsten R and her delicious devilled eggs. Did I already write thanks for that?

Not tracking well. Love and gratitude to all.

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Happy Chicken Legs and Bean Dip Day

And Thanksgiving. That too. We’re just non traditionalists. Unless tradition includes Mystery Science Theater’s Turkey Day marathon. Then we’re traditionalists.

Anyway, I’m super thankful and pretty tired. Hi world.

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Thank You Roll Call

My gratitude has been quiet lately but it’s time to call out to some really awesome people.

Thank you to Kelli for sending me coloring books and a new set of coloring pencils. I had forgotten how relaxing coloring is.

Thank you to Mom for all her understanding.

Thank you to Savannah for always being uplifting.

Thank you to Molly for being my surgery buddy.

And thank you so much to Isaiah’s Mom, Edie, for sending this card:
beautiful card

Life does not have to be perfect to be wonderful. -Annette Funicello

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Less Than Two Weeks and Listy

Listy makes a great pun. I’m listing like a ship and I’m listing like a person with a pen and paper.

Three days of work ahead, a holiday, some tasks and then surgery.

So what about those tasks?

  1. Set up Food Tidings
  2. Dye my hair (the Sunday before surgery)
  3. Do art fun
  4. Finish organizing room with Danica’s help
  5. Make a list for Danica to do the deep clean while I’m in hospital
  6. Organize health papers for SCDS (ambitious!)
  7. Make pumpkin pie (I love my own pumpkin pie)
  8. Try not to obsess on that brain surgery thing

I did get my movies for post-op sorted:
dvds in a row 1
dvds in a row 2
dvds in a row 3
Yeah, the last one is blurry. So is my brain. The thing next to the Alien set is a video game, I added more video games after taking the picture.

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Thank You Roll Call

Thank you to my fabulous coworkers especially the ones who are half way between “we can do this without you” and “what are we going to do without you?”

Thank you to new friends and old.

Thank you to my mom, husband, and just everybody in my family. I am so fortunate to have you all.

Thank you to all the medical people who are helping me move towards health.

Dizzy but thankful.

 

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Doctor Day and Surgery

I just woke up from a five hour nap. Went to see my SCDS surgeon then bumped into Molly and had lunch together. Molly is my surgery buddy. We met on a support group for people with SCDS, both live in Portland and get along really well. Her SCDS doesn’t make her quite as loopy as mine does.

Anyway, all of my surgery questions are answered and all of Isaiah’s surgery questions are answered. My next doctor thing will be in hospital actually having my craniotomy.

I sent out the big email to everyone about surgeries and holidays and birthdays and whatnot. My birthday is ten days after the surgery. My doctor says I can drink. Isaiah says Mojitos are not a winter drink. I told him that we’d crank the heat up in the house until it was Mojito weather. I think I won that one.

Still feeling a little loopy. Lately though that’s like saying my head hurts. My head has hurt since May. At least I can pull off complete sentences and the sound of my own typing is only mildly annoying.

I’m going to try to finish out my symptom descriptions in the next few weeks. The plan is for the surgery to fix the symptoms and I feel writing about them in the present tense is very important.

Thinking of symptoms I was describing the weird noise that happens when I turn my head to fast and the doctor said it’s probably the sound of my brain moving inside my head.  That’s a little freaky.  Ok more than a little. That alone was worth a five hour nap.

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Ways to Cope

Timer for all cooking. Mostly avoid cooking.

iPhone for calendaring, reminders, notes, pictures of things to remember, texting.

watching predictable tv or listening to monotonous music to drown out unexpected noises

Try not to scratch face or head. Or talk loud.

Fluffy socks mute the sound of my feet hitting the ground.

Do not bend over, learn to pick up objects from the floor with my toes.

Do not move quickly.

Do not clap my hands.

Keep blood pressure low, loud pulse bad.

Touch walls or other objects to keep a sense of where down is.

Avoid noisy fabrics.

Keep eyes unfocused. I know, it’s weird. I don’t know why this helps with the dizzy.

Avoid noisy food.

Naps.

Complain a lot.

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Fourteen Days

In fourteen days, also known as two weeks, I will arrive at the hospital for my craniotomy.

Every day I feel more glad that this will happen. Every day I become more scared about this happening.

The surgery feels like the beginning of a second chance at life, hiking, camping, running, dancing. An infinite future stretches out beyond it that glimmers on the horizon. I’m also completely focused on that one day and no matter how much I try reality doesn’t seem to go beyond it.

The surgery could be described as a door. I suspect I know the wonderful things on the other side but reality is that it’s closed right now. It (and my head ha ha) opens on December 4th. Hopefully it opens onto something wonderful.

After all it’s 24 days until my birthday…

 

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Ow

Ever bang one side of your head against something sharp? Or get cuffed on one side of the head? Where your ears ring and there’s a sharp pain and you feel sick to your stomach?

Every little noise makes my head feel like that riht now. Even the sound of the typing. Even the sound of Isaiah opening envelopes to pay bills. EVERY noise.

And I feel like this all the time. To degrees of bad and not so bad. Today is bad. Came home early from work. Slept a bit.

Why am I typing? I can’t lay in bed forever. I’m dying of boredom. DYING of Boredom.

Ok, typing too much. Ow ow ow.

Post Script: and the sound of my feet when they touch down on the floor, or when my skin brushes up against something, or the creak of my vertabrae when I move my neck or the ever so subtle sound of my eyelids popping when I blink, or the sound of the cat scratching her ear in the other room, or the hum of a computer or game console or the click of that little button on my iPhone – why isn’t there a way to navigate without clicking? Or the sound of a pencil or pen scratching paper or pages turning, or even my fingers tapping the glass on my iPhone like tiny tymphonies.  I cannot escape the noise. The noise is inside me. It even follows me into my sleep. Oh and cars driving past or the flash of bicycle lights which feel like sound or the chirp of birds or the woosh of wind. My pulse. Oh god my pulse. There’s no escaping my pulse. No wonder before they figured out this was all about a #mm hole in the inner ear that people were thought to be schizophrenic.

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