Awake brain surgery (awake craniotomy): what you do, and why

Why some brain operations are done with you awake for part of the time. What you are asked to do, and what it feels like. Why losing a word for a moment during the test is the test working.

The short version

Some brain operations are done with you awake for part of the time. The surgeon uses a tiny electric current to test the brain next to the tumor, while you talk or move. During the test you may lose a word, or the use of your hand, for a moment. It comes back. That is the test working. It shows the surgeon a part of your brain to leave alone. You are asleep, or very sleepy, while your skull is opened and closed.

What is an awake craniotomy?

It is brain surgery where you are woken up in the middle, so you can help.

A craniotomy is the operation to open the skull and take out a tumor. In an awake craniotomy, you are asleep or very drowsy while the skull is opened. Then the medicine is turned down and you wake up. While you are awake, the surgeon finds out which parts of your brain do which jobs. That part is called brain mapping. Then you are made very sleepy again, or put back to sleep, for the end.

Your brain has no nerves that feel pain. That is what makes this possible. Your scalp does feel pain, so it is numbed first.

A scan before the day can suggest where speech or movement sit in your brain, and it helps plan the operation. Testing the brain itself, while you do the job, is how the surgeon checks it in the moment.

Why am I having one?

Because your tumor is close to a part of your brain that does something you would notice losing. That might be speaking, understanding words, moving, feeling or seeing.

Everyone's brain is laid out a little differently. The surgeon wants to take out as much tumor as is safe. To do that, they need to know where the working brain starts, in your brain rather than in a textbook. For speech, the way to find that out is to test it while you use it. Movement can sometimes be checked while you are asleep. Speech and feeling need you awake to answer.

It is not done for everyone, and it is not done for every tumor. One surgeon who does these says it is a big deal for the patient, so it should only be done when it is really needed. Gliomas are the tumors it is most often used for.

To have it, you need to be able to lie still for a long time and to talk with the team. A lot of trouble speaking or understanding before the operation can rule it out, though sometimes that can be treated first. So can serious confusion, or some breathing problems during sleep. That is why your team asks so many questions about you first.

What happens, step by step

Before the day

1. A talk with your surgeon. This usually covers why you need to be awake, what the room is like, when you will be awake, and what you will be asked to do. Tell them about yourself too, because that part matters. See what you need first.
2. Practice. Often you meet a speech therapist or a brain doctor, and go through the tests you will do during the operation. It is usually the same pictures and words each time. That way, the team knows what your normal answers look like.
3. Maybe a special scan. Some hospitals do a functional MRIfunctional MRI: An MRI that watches blood flow while you do simple tasks. It shows which part of your brain does a job like speech or movement. It helps plan surgery, and a team may check the same question again during it. See the glossary. You do simple tasks inside the scanner while it watches which parts of your brain get busy. It helps plan the operation. It does not replace the test in the room. The extra scans before treatment goes through that appointment, including what happens if a task is too hard.

On the day

4. You are made very sleepy, or put to sleep. Your scalp is numbed, and a frame is fixed to your head so it cannot move. You may be lying on your back or on your side. Then the surgeon opens the skull. The medicine and the numbing are there so that you do not feel it.
5. You are woken up. The medicine is turned down. Waking up in an operating room is strange. The team talks you through where you are before anything else happens. There may be sheets hung up around you.
6. The test. The surgeon touches one small spot on your brain with a tiny electric current, for a few seconds at a time. While they do, you do a task. The same spot may be tested more than once.
7. The tumor comes out. The team keeps checking your speech or movement while the surgeon works, so they notice a change as it starts. That is how they know where to stop. A change at this stage is not the test. It may not pass, and that is exactly why they stop.
8. You are made very sleepy again, or put back to sleep, while the skull is closed.

Your job while you are awake

What you are asked to do depends on where the tumor is. For speech, you may be asked to:

• Name things in pictures.
• Repeat words or sentences.
• Read words out loud.
• Count, or say the alphabet.
• Answer simple questions, like your name.

For movement, you may be asked to squeeze a ball or a hand, lift an arm or a leg, or move your fingers or toes. For feeling and seeing, you may be asked what you see, or to say when and where you feel a touch.

How long does it take?

The whole operation takes hours. The awake part is not all of it, but it can be a long stretch of lying still. One team that does these tries to keep the awake part to about two hours or less, because people get tired and tired people make more mistakes on the tests.

At each spot, the current is on for only a few seconds, usually less than four.

How long you stay in the hospital afterwards depends on the operation and on you. The brain surgery page goes through the stay and the weeks after it.

What does it feel like?

When a word or a hand stops working

This is the part to know before you go in, because it is frightening if nobody warns you.

When the current touches a spot that does a job, that job stops for a moment. You may know exactly what a picture shows and not be able to say the word. You may start counting and find the numbers will not come. Your hand may not move when you tell it to, or it may twitch on its own.

Then the current stops, and the word or the movement comes back. That is the test working. It has just shown the surgeon a spot to leave alone.

One person who had this done could not say anything after the letter A while the surgeon tested one spot. The team left that small piece of tumor where it was, to protect that person's memory.

A speech therapist on one of these teams puts it simply: the operation is the best time to make a mistake. Finding the spots that cause mistakes is the whole point. So if you get something wrong, you have not failed anything. You have helped.

The rest of it

• No pain from your brain. You may feel odd things, but they should not hurt. A test near the movement area can make a muscle tighten by itself. A test near the feeling area can make part of your body tingle.
• If anything does hurt, say so right away. One surgeon says most people do not want to bother the team during the operation. Tell them anyway. They want to know, and they can do something about it.
• Lying still is often harder than anything that hurts. One patient's hips ached from lying on one side. The team stopped, moved them, and gave them a pillow, several times.
• Noise. You may hear the tools and the team talking.
• Feeling cold. The team has warm blankets. Say if you are cold.

Afterwards, some people remember parts of it and some remember very little. In one small study of people who had it done, some remembered nothing of it at all. In the same study, more than half remembered the frame going on their head, a couple of them found that sore, and two had pain in their teeth. None of them said it was harder than they had expected.

What is hard about it, and what can be done

Being scared of it. One person who had it done said the hardest part was the night before, imagining it, and being afraid of feeling pain. Touching your brain itself should not hurt, because it has no nerves that feel pain. Go through every question you have at the talk beforehand, and ask to go through the tests more than once if that helps.

Panic, or feeling closed in. Say so at the talk before the day, and say so on the day if it happens. The doctor in charge of your sleep medicine and your breathing, the anesthesiologistanesthesiologist: The doctor who puts you to sleep for an operation. They look after you while you are under. They see you before the day too. They check that an anesthetic is safe for you. See the glossary, is there the whole time. They can change how sleepy you are.

The tube for your bladder. Because you lie still for hours, you may have a thin tube put in to drain your bladder. If that worries you, bring it up at the talk. It may not be possible to avoid it, and it is still worth asking. One team found another way for a patient who did not want one.

Feeling that you got the answers wrong. You did not. A wrong answer during the test is information the surgeon needs. It is not a mark against you.

What can go wrong

Everything on what can go wrong in any brain operation applies here too. Being awake adds two things of its own, and there is one more worth saying here.

A seizure during the test. The current can set off a seizure. There is no number for this on the page. The studies disagree so much about how often it happens that any one figure would give you the wrong idea. It is more likely if you have had seizures before, and for tumors in some parts of the brain. Often it is brief and stops on its own. The team is ready for it. The first thing they do is rinse the brain with ice-cold salty water, and there is medicine if that is not enough. Most pass without doing any lasting harm, though an arm or a leg can stay weak for a while afterwards. Rarely, one is serious enough to affect breathing or the heart. A doctor who watches your breathing is in the room the whole time. Ask what your own risk is.

The awake part has to stop. Sometimes it cannot go on. This is uncommon. The usual reasons are a seizure, or that you can no longer talk with the team. Then you are put back to sleep and the operation carries on. That is planned for. It is also not nothing: in one large study, people whose awake part could not be finished had less of their tumor taken out, and more trouble with speech afterwards. The same study found most of those cases could have been avoided, by choosing carefully who has it done and by care with the medicines given during it. That is the real reason for all the questions before the day.

Waking up with something new. After the operation, some people have a new problem, like trouble finding words or a weak arm. The test is there to protect you from that. It cannot rule it out. Many new problems after brain surgery get better over the following weeks. Some do not. If your tumor is near the area that starts movement and speech, read the part about SMA syndrome before the day. Ask your team what they expect for you.

Is being awake the better way?

Not for everyone. It is a tool for one situation: a tumor close to brain you need. The surgeon quoted above says that when the tumor is not in that kind of place, being asleep is much easier on you.

Some studies suggest that people with tumors in those places may have fewer new problems afterwards if they are awake. But most of those studies cannot settle it. The people chosen to be awake may have been different from the people who were not, so the comparison may not be fair. Whether it is better has not been proved. Even so, the experts who pulled those studies together think it should be strongly considered for high-grade gliomas near speech or movement, at a hospital with the experience.

Whether you need it depends on exactly where your tumor is. If your tumor is next to the parts for speech and being awake has not come up, it is fair to ask why. A second opinion is normal.

If you do not want to be awake, say so. Being willing is part of how the choice is made. Ask what they would do instead, and what that would change.

What you need first

Tell them what matters to you. At the talk beforehand, tell the team what you most need to keep, even if they do not ask. Maybe it is a job that depends on your hands, or playing an instrument. It can shape which tests they use, and where they stop. One patient was asked, during the operation, whether the surgeon should go further, when going further risked feeling and movement in part of the face. That person chose to stop.

Do the practice properly. Ask for as much practice as you want. If a picture shows something you would never have known the name of anyway, say so. One patient called a picture of a swan a bird, because swan was not a word they knew. Finding that out early meant nobody mistook it for a problem during the operation.

Ask how many of these your surgeon does. It is a special kind of operation, and some hospitals do far more of them than others. If there is time, a second opinion is normal.

Get ready as you would for any brain operation. Getting ready for surgery goes through the tests, the fasting rules and your medicines. Read it before you change any medicine, and above all a blood thinnerblood thinner: A medicine that makes it harder for your blood to clot. Aspirin is one. And there are several others. Never stop one on your own before an operation. Your team decides that. And each medicine is different. See the glossary.

For the person going with them

If you are the one driving to the appointments, keeping track of the pills, and lying awake at night worrying about them, this part is for you.

You are allowed to ask questions. In one study, families said they were afraid of annoying the doctor by asking too much. One of them was told by a doctor to stop playing doctor. Ask anyway. Write your questions down before you go, and bring a notepad. Two people in the room hear more than one.

Ask who your first call is. Care comes from a lot of people at once, and it is easy to end up as the only one holding it together. Ask the team: who do I call first? Some teams have one person whose job this is, often a nurse. Get the name and the number.

Get two numbers, and know which one to use. One for work hours, one for nights and weekends. Then ask what counts as "call us today" and what counts as "call an ambulance" for this tumor, and write the answer down where you can see it. If you are not sure which it is, call. Nobody on that team will mind.

If they have seizures, read about them before you need to. What to do when someone has a seizure is the one to know by heart. Living with seizures is about the rest of the time: what is safe, what to change, and driving.

Ask to be shown anything you are sent home to do. In that same study, families were sent home to change dressings and give medicines with no training at all. That is not fair to you. Before you leave the hospital, ask someone to show you. Then do it once while they watch.

Say what you notice. You may see a change before they do. Changes in thinking, mood and behavior can show up to the people close by first. Telling the team is not going behind their back. It is something the team cannot learn any other way.

Look after yourself, and let people help. Eat, sleep, and keep your own appointments. Take a little of the day back for yourself. When someone asks what they can do, give them a real job: a meal, a ride, an hour with the kids. Most people want to help and do not know how to offer.

You can talk to somebody about all of this today. See where to get help.

Go to the talk and the practice if you can. Questions tend to come up later, at home, and it helps if you heard the answers too. You may also know better than anyone what they most need to keep.

On the day, expect a long wait. The operation takes hours. A long wait does not mean something has gone wrong.

After the operation, the caregiving is much like it is after any brain operation. The wound, the medicines, the two lists of when to call, and how long it goes on are all in the caregiver part of the brain surgery page. Read it before the day.

Who reads it, and how do I get the result?

This operation gives you three answers.

How much came out comes from a scan in the first days afterwards. What the words about how much came out mean goes through them.

What the tumor is comes from the lab, and takes longer. Waiting for your pathology results explains that wait.

What the test found is the third answer, and it is easy to forget to ask for it. Ask your surgeon where the working brain was, and whether any tumor was left because of it. If some was left to protect your speech or movement, that was the test doing its job.

Ask before you leave who will go through all three with you, and when.

What to ask your team

• Why do I need to be awake, and why is asleep not enough for my tumor?
• What will you ask me to do, and can I practice it more than once?
• What will I feel, and what odd feelings should I expect?
• Who will be with me and talking to me while I am awake?
• What happens if I panic, or cannot do the tasks?
• Can I take anything to help me sleep the night before?
• Will I have a tube for my bladder, and when does it go in?
• Does anything about me, like earlier seizures, make a seizure during the operation more likely?
• If the awake part has to stop, what is the plan then?
• How many of these operations does my surgeon do?
• What should I tell you about my life, so you know what matters most to keep?
• Afterwards: what did the test find, and was any tumor left because of it?

Where to go next

• Brain surgery, from the day to the weeks after, which covers everything about the operation that is not about being awake.
• Getting ready for surgery, for the tests and instructions before the day.
• Your MRI scan, which you will have before the day and after it.
• Waiting for your pathology results, while the lab works on the tissue.
• What to do when someone has a seizure, so the person with you knows.
• Get help now if you need to talk to a person today.