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What It Feels Like to Have Brain Surgery When You're Awake

I was 25 when doctors found a raspberry-sized tumor in my brain. Obviously, I wanted to be totally conscious for the surgery.

by Kineta Kelsall, as told to Kate Lloyd
Oct 21 2015, 1:00pm

Illustration by Tuesday Bassen

When someone cuts into your brain, it feels squelchy. As the knife goes in you can almost hear a sound like you're cutting into a juicy steak. The cutting has nothing on the drilling, though. When someone drills into your skull it's like an airplane taking off or a builder's drill digging into your head.

I know this because I had an operation to remove a brain tumor while I was awake.

I first noticed something was up when I started dropping stuff. In the space of a week, I smashed a bowl of soup all over my kitchen and lost a round of drinks on the floor of a bar. I was 25 and looking for a new job. I'm usually very calm, but I found myself getting stressed and awkwardly emotional about interviews. I didn't think anything of it at first, other than that I was being a bit of an idiot. Then I got a numbness all down the left side of my body.

I went to the doctor and they said they thought it might be a trapped nerve, but a few days later I started getting dull headaches in the morning too, like I'd been drinking the night before. My girlfriend took me to the ER to get checked out and the next day I was rushed into hospital. I had a CT scan and they found a benign tumor the size of a raspberry that was dripping blood into my brain. I thought I was going to die.

After the surgery. Photo courtesy of Kineta Kelsall

I was in hospital for five days while they gave me steroids to stop the bleeding. Then I met with my surgeon to discuss having the tumor removed. When she first gave me the option to be awake, I was like, Oh my god, what the hell?! Only a few hospitals offer the operation and she'd only done it 50 times before.

She explained that, because of the location of my tumor, if I was asleep during the procedure there was a 25 percent chance I'd wake up with a disability. If I was awake there would only be a one percent chance. Lots of people still turn down the procedure because they're scared of being awake, but I rationalized: If I'm asleep I won't know if I'm dying, whereas if I'm awake I can do something about it.

Plus, I thought it would make a great story.

Apparently, I kept putting up the peace sign when she asked if I was okay.

For four months before I could have the operation I had to meet up with a neuropsychologist to practice tests in an MRI scanner that I'd repeat in the surgery so they could map my brain. They'd put a book in front on me on a computer screen and I'd read it in my head but not speak it. They could then see which parts of my brain my tumour was close to. There were memory tests as well, which I still do now: They asked me to name basic objects or recite the days of the week.

I don't remember being anxious on the morning of the operation but my girlfriend says I was. I had to lie on my side with my legs propped up so the surgeon could get to the tumour. There was an X drawn on my head to pinpoint the spot.

Giving the thumbs up after the operation. Photo courtesy of Kineta Kelsall

You don't have any pain receptors in your brain, but the anaesthetist gave me a general anaesthetic to relax me. He also injected my face so that the drilling didn't cause any discomfort. It hurt so much, I swear I'm never getting Botox.

I heard someone say, "Right, we're going to start!" and the surgeon started drilling. The drill was probably only the size of a compass but it felt like the size of a car. It felt it like at any second it could slip and kill me.

Because I was on my side, all I could see was my neuropsychologist. Apparently, I kept putting up the peace sign when she asked if I was okay. After the surgeon reached my brain, she placed electrodes on different parts to stimulate spots with an electric current. She ran me through the tests we'd practiced, making sure my speech and movements were correct.

When I first woke up I forgot what a 'cup' was, but then I remembered and got over it.

My tumor was near the motor and speech areas of my brain so they put the electrodes really near there. When the electrodes were in place on different areas, I wasn't able to move. They told me to count to 10 and when I got to seven I wasn't able to speak. It meant they knew which parts of my brain they couldn't touch, which they wouldn't have done if I was asleep. I kept asking, "Is that normal? Is that normal?"

Eventually, a doctor put her thumbs up and said, "Kineta, the tumor's out!" I was like, "Woohoo!" Then this feeling came through my left arm and it felt like I couldn't breathe, I began shaking and it all went black. I started having a seizure and was out for five minutes. It's the one thing I don't think I'll ever get over. I thought was dying.

Apparently seizures are quite common during brain surgery. If I hadn't had one, I'd have been awake for the stitching up but they had to put me to sleep. When I came around, I felt a huge sense of relief that the tumour was gone but I had two more seizures. My speech was impaired. I'd go from "blah, blah, blah" to "bjwjopdjisf". And, when I first woke up I forgot what a 'cup' was, but then I remembered and got over it.

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In terms of feeling ill, it wasn't like I was physically unwell. In a weird way I've had worse colds. My head was quite sore and I had mild headaches everyday, but I was bedridden for being tired, not sick. Also, I'd experienced a lot of mental strain. The perception of tumors as killers makes you more ill than the tumor itself.

If I had to have the operation again I wouldn't be afraid. Everybody says, "If I was in that situation I'd have totally freaked out," but when you're actually put in the situation your whole mindset changes. Being awake made me feel in control, which made me feel calmer.

Since my surgery, I've started fundraising for The Brain Tumor Charity. There's a woman who emailed me: "I'm going through the same thing, I'm so terrified." I told her not to be scared. Being awake made me feel in control. And it is a great story to tell. In fact, I wanted to tweet through it, but the hospital wouldn't let me.

As told to Kate Lloyd.

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