Category: SCDS

From when this new headache started in May my only question has been “How can I stop it?” Once I got the diagnosis of superior canal dehiscence syndrome all I wanted was to take a nap because my question was answered and the quest to do what was necessary was about to begin.

My mother’s first question when I told her was “How did this happen?” She’s one of those questing, curious people which is why she was so good when she worked in QA.

I have to admit I’m not the best listener these days. The headache is distracting. What I remember from the conversation with the doctor is “mumble mumble head trauma mumble mumble birth defect.” I should probably ask Isaiah to write this post for me but he would probably just write “it’s all conjecture.”

So here’s some conjecture.

I believe that I was born with (or developed early on) a tiny tiny tiny hole in my superior canal. The best reason I have to believe this is I have always hated loud noises and it took me six years to learn to ride a bicycle (balance).

This hole was enough to make me dizzy if I exercised too much (I always thought I was out of shape but really? dizziness?) but not so much as to cause bad headaches or nausea or a lot of my other current symptoms.

Then came head trauma. “Mumble mumble change in blood flow in the brain. Mumble mumble.”

Oh yeah! Last year’s embolization of those two arteries of the many that make up my dural arteriovenous malformation. That would change the blood flow. (duh)  The doctor (in a moment where I heard more than mumbles) even said “Brain surgery counts as trauma.”

So take a tiny tiny tiny hole living in a comfortable, stable environment and lessen the pressure put on it by an excess number of arteries in that same area. Pop! (No it didn’t literally pop.) Tiny tiny tiny hole finds new freedom to grow and expand!

Boom! Headaches, extreme dizziness, nausea, brain fog, trouble talking, etc etc etc.

As  I met with doctors, had scans and tests done, and generally searched for why I don’t feel well I made jokes about brain surgery. I’ve been doing this since May when the quest began. I’m only just now facing up to the reality that this is happening. I still make jokes  but it’s getting horrifyingly real.

Yesterday’s tests came in two parts. The first part was standing on a small moving platform trying to keep good upright posture. They would move the “scenery” around me around or the platform or both. This was done multiple times with my eyes both open and shut. Made me very nauseous. The second part involved sitting in a chair following light dots on the wall. My cats would have loved it. It made my head hurt. There was one part with light and dark stripes alternating that made me want to cry. I just couldn’t focus on the colors, my eyes kept seeing the wall behind instead. The technician had me keep trying and said unfocusing my eyes was a coping mechanism.

Anyway, the result was that I have measurable symptoms that match the scans. They want me to start physical therapy before the surgery to start correcting my incorrect assumptions about where my center of gravity is. I use my eyes almost entirely to maintain my relative stance to the world around me. My inner ear and what gravity tells it is ignored (because it’s wrong).

The other result was my head hurts horribly and every time I move it feels like my brain is sloshing inside my skull.  I did make it to work though it was hard to focus. I find the pain easier to deal with now that I can pinpoint it better.

I just sent out the email and made a Facebook announcement. One more checkbox on the “this is really happening” list. It makes me grumpy. Or my headache makes me grumpy. Either way I think I’m done with the internet for tonight.  Goodnight.

Yesterday I scheduled brain surgery for myself. It sounds so weird. You’d think that if I was going to have brain surgery I wouldn’t be able to schedule it for myself, I must be a vegetable or drooling at the very least. Instead I’m just in pain and sick.

I’m still trying to figure out how to tell everyone. Some people know but it’s been very scattered based on who I bump into or not.

Last year I had a different brain surgery for a different problem. Last year I wrote tons of update emails and kept everyone in the loop. I was delirious and on pain killers and not working.

Now I have a problem that pain killers don’t really help. Sure I get loopy but the pain is still maddeningly there. (I wonder if the last name Mattingly is a shortening of Maddeningly.)  I am working. I miss a lot of days but I still can work on good days.

Last year I had a Dural Arteriovenous Malformation. Now it’s my Superior Canal Dehiscence. Spellcheck hates my issues.

Last year the surgeon threaded a tube into my femoral artery, up through my heart and jugular to the arteries in my head and embolized two of the way too many arteries I have up there. In December a different surgeon is going to drill through my skull collecting bits along the way then use those bits to plug the hole in my superior semicircular canal (part of the inner ear).

I’m obsessed with the inner ear right now. I’ve been designing T-shirts, flasks and buttons that show the inner ear and try to express what that hole looks like. I haven’t finished descriptions or figuring out how much I want to try to make off each T-shirt but I’ve got a neat little Cafe Press store front to maybe sell my wares.

Right now I’m in bed trying to lay very still. I had some testing done on my balance this morning and I feel like throwing up. I’ll wax poetic about what it’s like to have a Superior Canal Dehiscence plenty later. Right now let’s just say that I am ridiculously unable to remain vertical with my eyes closed.