-364 days

1 year ago – Monday, May 16 2016

I waited, excited and nervous.

Tomorrow. A burr hole will expose the surface of my brain for the very first time… tomorrow. Less than 24 hours.

I don’t remember what I did that morning, or the days leading up to it. I know that I watched videos of the pending surgery over and over, read and reread clinical studies done on a similar type of DBS (deep brain stimulation) surgery that I would be undergoing.

Dr. Fenoy, the young neurosurgeon who specializes in DBS at the Mischer Neuroscience Institute, had met with me as little as a month and a half prior and I had made up my mind, that day, that I would have this elective surgery done.

“Elective”, because it wouldn’t have been necessary to keep me alive. But that’s exactly how I was looking at it; it would keep me alive. With no idea as to how effective it would be, it would keep me alive, even if it only reduced my tremors by 25%. I would stay alive for that. 

I knew that there would be risks to having the surgery. I could lose memory – fine; I’ve already lost enough from the strokes. Infection could set in after the surgery, and if it were caught early enough the surgery would need to be reversed. Other potential complications – the usual, such as coma or death – were possibilities. But a small possibility. If it were a large possibility, I still would have done it. I didn’t want to live like that anymore.
Dr. Fenoy would target the dentatorubral tract (DRT) in the red nucleus of my thalamus. Used primarily to treat PD (Parkinson’s disease), dystonia and Meige syndromeET (essential tremor), OCD (obsessive compulsive disorder) and depression – none of which share the area of target that Dr. Fenoy would aim for during my specific surgery.  The FDA-approved areas of target for DBS are the Anterior limb of Internal CapsuleGPi (Globus Pallidus), STN (Subthalamic Nucleus) and VIM (Ventral Intermedius Nucleus).

So, I read everything I could about DBS for essential tremor and PD, the two conditions most similar to mine, and poured over the manufacturer’s website.

Early on I had made the mistake of thinking that my brainstem tremor was caused by my acquired acute cerebellar ataxia, without realizing that I was dealing with two separate disorders that have overlapping symptoms and similarities.

In my non-medically educated mind, I’ve wondered if DBS could be used to assist in management of acquired and hereditary ataxia-related symptoms. 

Where was I? Focus.

Oh, right. Day before surgery.

After a few hours of reading and rereading about my forthcoming surgery, I stumbled clumsily back to the apartment to shave my head.

Yep. Just like that.

My hands shook in uncontrollabe, unusually tiny, quick tremors – something that began happening after the multiple simultaneous infartions (multiple strokes), when I get nervous. And that day, I was pretty damn nervous… with excitement. 

I took Adam’s electric shaver and stood in front of the washroom mirror.

But I couldn’t seem to stop shaking. I grew nervous about knicking my scalp and worried that the surgery would be postponed because of it.

Yeah. Because that made sense…

My scalp was going to be pulled back from my skull but somehow a tiny knick would negate having the surgery.

Entirely possible but ironic nonetheless. 

In the end, Adam shaved my head. First, he gave me a mullet. Then a mohawk, which just looked like a bad mullet because of how long my mohawk hair was. I giggled the entire time but refused photos. 

Before shaving my head, Adam took one last picture of my long hair. He’s thoughtful like that.

He didn’t shave it close; that would be done by a member of the surgical team.


I recorded a quick video before lying in bed. 

https://youtu.be/cBg8jUA5NWs
Exhausted and excited, I barely slept.

1 year. Tomorrow will mark 1 year, and it’s never been better.

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