Deep-brain stimulation surgery has turned my life around

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Thanks to the dyskinesia-dancing, my Fitbit registers 10,125 steps while I sit in the truck for the seven-hour drive to Vancouver. Dyskinesia is the involuntary movement caused by the medicine I take to help manage my Parkinson’s disease.

I am on my way to Vancouver, travelling in the time of COVID, so I can get my long-awaited deep-brain stimulation surgery. It won’t be a cure – there isn’t a cure for Parkinson’s – but it has the potential to mitigate the most bothersome of my symptoms.

On the morning of the surgery, it takes four tries and four different nurses to get my IV started. I decide this is not an omen.

My neurosurgeon rubs the top of my buzzcut scalp.

Nice, he says softly.

And then he pushes the stretcher to the MRI lab. I decide this can be the omen, his kindness, his attentiveness.

MRIs are loud! Really loud.

The young Scottish neurosurgeon doing a fellowship with my doctor fits me with a halo. Halo. Funny word for a metal brace bolted to my skull. It takes a while. There’s quite a bit of tugging. It seems as if it might be hard work. I recite poetry in my head; Yeats and Frost and Mary Oliver get me through.

I am back in pre-op while the surgical team use the MRI to fine-tune their plans. I ask my daughter to take my picture so I can see what the halo looks like. I don’t recognize myself. I am bald. I am kind of smiling. I look nothing like an angel.

There are a lot of people in the operating room when we finally get there. My double-vision makes it seem like more. They all introduce themselves. I appreciate that.

“In our family, we call this procedure ‘getting my magic wires,’” I tell the surgeons. They laugh a little.

A while later, my surgeon says, “I like that, ‘magic wires,’ we may use that from now on.”

I am quietly pleased.

I listen as my surgeon advises his Scottish counterpart how to cut my scalp to create the skin flaps that will be peeled back to expose my skull for the drilling of the two holes, into which the magic wires will be inserted. Their endpoint is in an area of the brain known as the globus pallidus. Globus pallidus. It sounds like a Harry Potter charm. It begs to be said with a wand flourish.

“Nice curved lines,” the senior surgeon coaches. “No sharp corners.”

Am I this young doctor’s first deep-brain stimulation surgery? I wonder.

The thought does not concern me. Someone has to be first and I feel in very good hands. Or maybe there are just really good drugs in the IV.

“Magic wires time!” he says cheerfully.

The drill is loud. Really loud. And it takes a while. Nancy, the lovely nurse, holds my hand. My mantra begins: Please guide his hands. Please guide his hands. Please guide his hands before devolving to: Don’t hit grey matter. Don’t hit grey matter. Don’t hit grey matter. He doesn’t. Then it is over. The drilling, that is.

Nurse Nancy asks me if I’d like music.

“Beatles, please,” I say because I will know the words and be able to sing along in my head. And I am running out of poetry. The first song is Here Comes The Sun.

There are squishy things, like giant blood pressure cuffs on my legs. They rhythmically inflate and deflate, keeping the blood flowing, preventing clots.

The probe goes in, first one side then, the other. The surgeons talk to each other in co-ordinates and millimetres. The senior neurosurgeon holds my hand to monitor my reaction. I repeat 4, 5, 6 to make sure my speech is okay. At one point, I find I am having trouble getting the numbers out. They back up and try again. Beautiful job, magicians.

I see flashing lights, like tiny starbursts on the edge of my vision. The younger doctor has never witnessed this particular response before. My doctor asks me to describe it for him.

“Bright,” I say, “like sparklers. Kind of cool.”

That makes them chuckle.

“Old hippie,” I add.

There are definitely good drugs in the IV.

The halo is removed. Thank goodness. I think of little children strapped into car seats and understand why they go ballistic.

I get to sleep for the final phase of the surgery, the part where the battery is placed in my belly. Typically it goes in the chest but I am too thin. After all, I have been moving non-stop for years.

I wake in the recovery room. My head hurts a little. My belly hurts more. The battery is the size of a deck of cards but it seems larger and the incision site is tender.

You did a good job, the surgeons tell me. It went really well.

Thank you, I say. You did a good job, too.

I mean it. But this is not the end. I need to heal before my device can be activated in about six weeks’ time.

The next day, I am discharged and my daughter and I walk slowly back to our hotel. It’s not far.

I have two full days to rest before the trip home. The surgery seems to have settled the dyskinesia in my upper body. It makes me cry – being able to sit still. When we drive home, I clock under 1,000 steps for the entire day.

This beautiful calm does not last. Three weeks post-surgery, I am full-body dancing again. But the lighting of my neural Christmas tree is not too far away.

When the day comes, my daughter and I meet the DBS specialist nurse in the same small office in which I had my pre-operative assessment. That was a gruelling process, several hours long during which we confirmed that dyskinesia was my most disabling symptom and therefore the focus of the surgery.

The “turning on” of my magic wires is different, a gentle, subtle drama. Working with an iPad on her lap the nurse finds the sweet spot settings through trial and error, a process that triggers multiple sensations from tingling, to nausea, to a full-on Starry Starry Night explosion behind my left eye.

My daughter takes a short video with her phone.

Hey Mom, she asks, “What just happened?”

“I’m sitting still,” I answer, and I let the tears fall.

I am sitting still. I am standing still and walking normally. My foot doesn’t roll up on its side and I have experienced no muscle cramps, no hand or leg tremors since that day. I still have Parkinson’s. The disease has many ways to make its presence known. Symptoms may return and new ones lurk somewhere in my future. But for now, and possibly years to come, I get this sweet return to some of what I was. Who I was.

I believe in magic.

Leslie A Davidson lives in Revelstoke, B.C.