Tag: SCDS

Anticipation

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In three days I check into the hospital to have my superior canal fixed. As an added bonus I get a window into my brain. Sounds so much nicer than craniotomy.

The last couple of days have been tiring. Now that I don’t have to save any energy to make it to work on weekdays I can over do it all I want.

Yesterday I had lunch, dinner and card games with Isaiah, John and Lisa. We hope to visit John and Lisa in May.

Today I went to the beauty salon and got my armpits waxed. This is probably too much information for many people but I think it’s an interesting idea on the list of things to do before surgery. Personally, I shave to avoid the way armpits smell when there’s hair there. Shaving while dizzy sounds horrifying and honestly the days between bathing are probably be longer than I’d prefer. Seemed like a good idea at the time.

The only other  things to do are:

  • go shopping for soft food for post surgery
  • organize my room a bit more with Danica’s help
  • do laundry on Tuesday:
    • cleanest sheets the night before
    • cleanest jammies
    • cleanest loose clothes to wear to the hospital
  • get my haircut
  • lunch with Molly

Superior Canal Dehiscence Syndrome Symptoms

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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.

Thank You Roll Call

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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.

Thank You Roll Call

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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

Less Than Two Weeks and Listy

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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.

Thank You Roll Call

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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.

 

Doctor Day and Surgery

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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.

Ways to Cope

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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.

Fourteen Days

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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…