Brain surgery (craniotomy): what happens, and what comes after

The operation to take out a brain tumor, from the day you arrive to being back at home. What is done, and what it feels like. What the words about how much came out really mean. And what the person looking after you is being asked to do.

The short version

A surgeon opens a window in the skull, takes out as much tumor as is safe, and puts the piece of bone back at the end. The operation is called a craniotomy. Most people need intensive care at first, then a few more days on a ward. The brain itself feels no pain. The part people are least ready for is not the operation. It is the weeks after it, and that is where a lot of this page goes.

What is a craniotomy?

It is an operation to reach something inside your skull.

The surgeon makes a cut in your scalp and folds the skin back. Then a piece of skull bone over the tumor is taken out. That piece is called a bone flap. With it out of the way, the surgeon can see the tumor and take out as much of it as is safe.

At the end the bone goes back. It is held in place with small metal plates and screws. The metal is usually titanium. It does not set off metal detectors, and it is safe in an MRI scanner.

The name for this operation is a craniotomy.

Sometimes the bone is not put back right away. That is called a craniectomy, and it is done to leave room if the brain is likely to swell. The bone is usually put back later, in a smaller operation.

Why am I having one?

There is more than one reason to operate, and it is worth knowing which one is yours.

• To find out what it is. For most brain tumors, only a piece of the tumor itself, looked at in a lab, can give it a name. Your team may already have a good idea from the scans. They cannot be sure without tissue. Is there a way to find out without one? covers the rare times a team goes without.
• To take out as much as is safe. Less tumor left behind can mean less for radiation or medicines to deal with afterwards.
• To take the pressure down. A growth inside a closed skull pushes on everything around it. That is what causes a lot of headaches, nausea, vomiting and blurred vision. Taking out even part of it can ease that.
• To help with seizures. Surgery can make seizures easier to control with medicine.

Often it is more than one of these at once.

The goal is not always "take it all". The usual aim is to remove as much as can be removed without affecting how your brain works. Surgeons have a name for that: maximal safe resection. Where the tumor sits decides how much that is. Ask which of these your operation is for. It changes what a good result looks like.

What happens, step by step

Before the day

You will have a scan first, usually an MRI. Some of it is for the surgeon to navigate by on the day. What an MRI is like, and what to ask goes through that appointment.

You will have blood tests. You will meet the doctor who puts you to sleep, 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, to go through your allergies and anything that has happened to you under anesthetic before. You will meet the surgeon again to go over the plan and the risks.

Follow the hospital's instructions for the day or two before. They differ from place to place, so use the ones you were given rather than anything you read anywhere else.

Bring your advance directiveadvance directive: A written note of what you want done, and who speaks for you, if you cannot speak for yourself. A living will is one kind. If you have one, bring it in before an operation. See the glossary or living will if you have one. It says what you want if you cannot speak for yourself.

Asking for a second opinion first is normal and it is not an insult to anyone. If there is time, it is worth doing.

The day

You change into a gown and take off jewelry and contact lenses. An IV line goes into your arm, for fluids and medicines.

Part of your head may be shaved. It is usually only the area around the cut, not all of it. Ask beforehand if this matters to you, because it varies between hospitals and surgeons.

You are put to sleep. Your head is then held still in a frame so that it cannot move while the surgeon works.

Your scalp is numbed as well, even though you are asleep. The brain itself has no feeling in it. That is the reason some of these operations can be done as an awake craniotomyawake craniotomy: Surgery where you are awake for part of it and asked to talk or move, so the team can check those parts of the brain are not harmed. The brain feels no pain, and your scalp is numbed. See the glossary. That is a different plan, for tumors sitting next to speech or movement, and your team would talk it through with you well beforehand. Awake brain surgery, and what you do during it goes through that plan.

While you are asleep, the surgeon uses more than a pair of eyes:

• A map built from your scan. It shows where the tumor is under the surface.
• A microscope, because the difference between tumor and healthy brain can be very hard to see.
• A medicine that makes tumor glow. For some tumors you are given something beforehand that the tumor takes up. Under a special light it glows, so the surgeon can tell it from normal brain. It is called 5-ALA.
• Checks on the brain itself. The surgeon can stimulate an area and watch what it does, to find out whether it is doing a job you would notice losing.
• A scanner in the room. Some hospitals can take an MRI part way through to see what is left.

A piece of the tumor goes to the lab while you are still in the operating room.

Waking up

You wake up in a recovery area and then go somewhere you can be watched closely. Most people need intensive care at first.

Being in intensive care means being checked on very often, including overnight. Someone will keep asking how you are and testing how you are doing. It is tiring, and it is not a sign that anything is wrong. Problems can show up right away or days later, so noticing a change early is what the checks are for.

You may have a thin tube coming out of the wound to let fluid drain away. It usually comes out after a few days.

The days after

If nothing is going wrong, the team will have you up and moving the day after surgery. That feels early. It is deliberate: moving keeps your blood moving, helps your chest, and keeps your insides working.

You may see a physical therapist, an occupational therapist or a speech therapist, depending on where in the brain the tumor was. A tumor in the balance part at the back tends to mean work on moving. One near the speech areas tends to mean work on words.

You go home, or to a rehab unit, when you are stable, nothing has gone wrong, and there is a plan for where you are going.

How long does it take?

The operation itself takes hours, and how many depends on where the tumor is and how much is being done. Your family will be waiting a long time. That is normal and it is not a sign of trouble.

• In the hospital: usually about four to six days. Bigger or more awkward tumors, and other health problems, make it longer.
• A scan to see what came out: usually one to three days after the operation.
• Stitches or staples out: usually about a week to ten days. Some are the kind that dissolve on their own.
• The wound healing over: several weeks.
• Feeling like yourself again: it can take a month or two, and for many people longer than they were expecting.

What does it feel like?

Waking up is strange, and it is different for everyone. One person who has done it twice described feeling like a floating consciousness, apart from their own body.

Being confused for a while is normal. So is not remembering things that happened around the surgery. It gets better as the anesthetic wears off.

You will have a headache. There is medicine for it. Some hospitals give pain medicine on a fixed schedule rather than waiting for you to ask. That is worth having, because pain creeps up before you notice it. If yours does not do it that way, ask whether you can have it on a schedule. You are allowed to ask.

Feeling sick to your stomach is common. Say so, because it can be treated, and there is no prize for putting up with it.

Around the wound you may get numbness, odd shooting pains, and itching as it heals. You may also get swelling and bruising around your eyes. That can look alarming, and it is a normal part of healing.

If you wake up and something is not working the way it was, that is frightening in a way that is hard to describe. Say what you notice, right away, to the person in front of you. A lot of what shows up right after surgery does get better.

"How much did you get out?"

This is the first question almost everyone asks, and the words that come back are easy to misread. Here is what they actually mean.

For the first two words below, the answer does not come from what the surgeon saw in the room. It comes from a scan done in the first few days after the operation, and what that scan can see is what the words describe. The third is about the aim rather than the result.

• Gross total resection. No tumor can be seen on that scan. Some reports call it a complete resection.
• Subtotal resection. Some tumor can still be seen. Also called a partial resection.
• Debulking. The aim was to take out bulk to relieve pressure, rather than to take out all of it.

Now the part that is rarely said out loud. Gross total resection means nothing was visible on a scan. It does not mean cure. In a diffuse gliomadiffuse glioma: A glioma whose cells spread out into the brain around it instead of staying in one lump. That is why the edge on a scan is not a clean line. See the glossary, the cells spread out into the brain around the tumor, which is why the edge is not a clean line. Cells left behind that way are far too small for any scan to show. They are still there after the best operation anyone can do.

That is not a reason to think the surgery failed. It is the reason radiation or medicines usually follow it, and the reason you get scanned again later. If nobody explains this, then "we got it all" followed months later by "it is back" sounds like somebody lied to you. Nobody lied. The two sentences were about different things.

The other half is just as true. For some tumor types, surgery alone can deal with it. Which group you are in depends on what the tumor turns out to be. That answer comes from the lab, not from the operating room.

And a subtotal resection is not a failed operation. When a surgeon stops short, it is almost always because going further would have cost you something you would not want to lose. That is sometimes settled before the day, and sometimes a decision made for you in the moment, with your life afterwards in mind. It is the right call far more often than not. When it is settled beforehand, it is usually because of what the tumor is sitting next to, and you can ask which it is for yours.

What can go wrong

Every operation carries risk, and brain surgery is a serious one. Your team will go through your risks with you before you sign anything.

There is no percentage on this page, and that is deliberate. The published figures for these risks vary so widely between studies that any single number would mislead you more than it helps. Your surgeon can tell you what your risk looks like, which is the only version that is about you.

The general risks are bleeding, infection, a reaction to the anesthetic, blood clots, a leak of the fluid that surrounds the brain, and seizures. Bleeding, infection and reactions to the anesthetic are not common, which is the honest shape of it without a number. Swelling of the brain is a particular concern after this operation, which is why steroid medicine is usually given before surgery and for a few days after.

Where the tumor is decides most of the rest. Some parts of the brain do a job you would notice losing. Surgery in or beside one of them carries the risk of affecting that job. Surgeons call a part of the brain like that an eloquent areaeloquent cortex: Parts of the brain that do a job you would notice losing, like speech, movement or sight. Surgery near them is planned with extra care. See the glossary, and you may hear the word or see it in your notes. That is why so much of the planning is about location, and why brain mappingbrain mapping: Finding out which parts of your brain do which jobs, like speech or movement. A scan before an operation can do it. It can also be done during one. Then small spots are tested with a tiny electric current. See the glossary and monitoring are used at all. The extra scans before treatment covers the scans your team may add to suggest where those parts sit.

Problems do not all show up at once. Something can appear right after surgery, or days or even weeks later. That is why you are watched closely at first and why you are told what to look out for at home.

And the message that matters most: many new problems after brain surgery get better over the following weeks. Some do not. Your team can tell you which they think yours is, and they would rather you asked than lay awake guessing.

If your tumor was near the supplementary motor area

This one has its own section because it is terrifying if nobody warns you, and ordinary if they do.

There is an area towards the front and middle of the brain that helps get movement and speech started. Surgery in or near it can leave someone, right afterwards, unable to start speaking and unable to move one side of the body properly. It arrives immediately. It looks exactly like the worst thing you were afraid of.

It has a name, SMA syndrome, and the important thing about it is that it is expected to pass. It usually begins to improve within a few days, and keeps improving over the weeks and sometimes months after that. People who are not told about it beforehand often believe they have been left permanently disabled, and spend that first week in despair before anybody explains it.

If your tumor is in this area, ask about this before your operation. Ask again afterwards if it happens. Ask your team what they saw and what they expect.

What is different in the weeks after

This is the part people most often say they were not prepared for, and it is the part that goes on longest.

Day two or three often feels worse than day one. Thinking can feel foggier, and words can be harder to find, exactly when you expected to be getting better. This is a known pattern and it is expected. It should be improving over the following month.

Tiredness, for weeks. More than ordinary tiredness, and it does not lift after one good night. Wanting to sleep in the daytime is normal, and a nap every day is a reasonable plan rather than giving in.

Attention is usually the thing that changes. A speech specialist describes it as the filter you use to focus on one thing and ignore everything else being less airtight. Noise, crowds and several people talking at once become much harder work. A conversation with one person is far easier than a conversation with three. A room full of visitors can finish you inside ten minutes.

Words can be slower to come. Trouble finding a word is the language problem that lasts most often. It usually improves, and there are speech therapists whose job is exactly this.

Nobody can see any of it. Once hair grows back over the scar people stop making allowances, because there is nothing left to see. That is the point people say is the hardest, and it arrives after everybody else has decided you are better. Say so when it happens. Telling the people around you that the difficulty outlasts the scar is worth doing, because they cannot see it and will not guess.

Is this the tumor, or is it the medicine?

Ask this before you assume the worst, because two medicines given after this operation cause things that look exactly like the tumor getting worse.

• Dexamethasonedexamethasone: A steroid medicine given to bring down swelling around a tumor. It is not chemotherapy. It has its own side effects, so your team lowers the dose when they can. See the glossary, the steroid used to settle swelling, causes muscle weakness in the legs, arms, shoulders and neck. Someone who cannot get out of a low chair may be having a drug effect, not a tumor effect. It also brings a bigger appetite, weight gain, trouble sleeping and mood swings, and it can hide a fever, which matters when you are watching for infection.
• Levetiracetam is the seizure medicine most often used here. Whether one is given around an operation at all is unsettled, so teams differ. It is linked with irritability, low mood and anger. Families blame the personality change on the tumor, or on everything the person has been through. Sometimes it is the pills.

Neither of these is a reason to stop a medicine on your own. A steroid in particular is never one to stop by yourself: how fast it comes down, and whether it comes down at all yet, is your team's decision. It is a reason to tell your team what you are seeing, because doses can be changed and medicines can be swapped.

Steroids goes through the steroid on its own: what it is doing, what it does to sleep, appetite, mood and strength, and how it comes back down again. Anti-seizure medicines does the same for the other one, including how to tell a drug effect from a tumor effect and how long a course after an operation is meant to last.

Is there a way to do this without opening the skull?

Sometimes, for some tumors. It is worth asking about, and it is worth understanding what it is.

One alternative is laser ablation, also called LITT. A thin probe with a laser on the end is put through a small hole in the skull and into the tumor, guided by MRI. The laser heats the tumor and destroys it, while limiting damage around it.

It suits tumors that are hard to reach, or hard to operate on in the usual way. Recovery from it is generally quicker than from a craniotomy. It is still a fairly new technique, so doctors are still working out where it is the best choice.

What it is not is a gentler route to the same result. It is a different operation, for a different set of tumors, and it is not offered everywhere. Ask your team whether it applies to you rather than asking for it.

The other name people have often heard is stereotactic radiosurgerystereotactic radiosurgery: Radiation aimed at a small target, in one visit or a few. There is no cutting, despite the name. See the glossary, sold under names like Gamma Knife and CyberKnife. That one is not an operation at all. It is radiation aimed at one small target, and nothing is cut. It is not a softer version of this either: it suits a small target with an edge that can be drawn, and it takes nothing out, so there is no tissue for the laboratory. Unlike the paragraph above, this one is worth raising by name if it has not come up. What it is, and what that day is like sets out where it fits.

What you need first, and what to bring

Before the day, expect:

• An MRI, sometimes more than one, including one for the surgeon to navigate by.
• Sometimes extra scans, if the tumor is near the areas for speech or movement, to suggest where those areas sit in your particular brain.
• Blood tests, and heart or chest checks if the anesthesiologist wants them.
• A review of everything you take, including anything you buy yourself.
• Tests of how you are doing now, so there is something to compare with afterwards.

Getting ready for surgery goes through all of that appointment by appointment, including when to stop eating and drinking and what happens to your medicines. If you take 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, read that page before you change anything.

Bring:

• Your advance directive or living will.
• A list of your medicines, with doses.
• Your questions, written down. You will not remember them otherwise.
• Someone with you, if you can.
• Very little else. You will not want your own clothes for the first few days, and things go missing.

For the person caring for someone after surgery

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.

Surgery is where a lot gets handed to you, usually with very little warning. What follows is what people say they wish they had been told.

The wound. Keep it dry. They can shower, but the cut should not get wet, and hair should not be washed until the stitches or staples are out. No creams, lotions or ointments on it unless the team says so. If there are strips of tape, leave them alone until they fall off. No hair dye until the team says it is fine.

Learn what a healing wound looks like before you need to know. Ask someone to show you the wound. Ask what they expect it to look like in a week. It is very hard to judge "is this worse?" against nothing.

Ask how the wound is closed, and how it comes undone. Stitches or staples usually come out about a week to ten days after surgery, at an appointment. Some are the kind that dissolve on their own and need no appointment at all. Find out which before you leave the hospital, and make sure any appointment exists.

Medicines. There will be more of them than you expect, and the doses change. The steroid is the one to be careful with: after a short course a team may stop it outright, and after a longer one it comes down in steps, but either way it is never stopped by you. Write the schedule down somewhere you can both see it. A pill box with the days marked on it is worth more than a good memory at week three.

What normal looks like, day by day. Very tired for weeks. Sleeping in the day. Headaches. Trouble concentrating. Swelling or bruising around the eyes. Numbness, shooting pains and itching near the wound. Feeling worse on day two or three than on day one. Being flatter, quieter or shorter-tempered than usual. None of that means something has gone wrong. Do mention the mood and temper changes at the next appointment, though, because they can be the medicines rather than the surgery, and medicines can be changed.

Two rules they will be given, and will be tempted to bend. No driving until their team says it is allowed. No heavy lifting until their team says it is allowed, and ask what counts as heavy, because the limit is usually lower than people expect.

Keep it quiet, and keep it small. One visitor at a time. Short visits. A room full of people who came to be kind can wipe them out in ten minutes, and they may not be able to say so.

When to call the team the same day. Ask for this list in their own words before you leave. Ask what temperature counts as a fever for them. Generally it is any of these:

• The wound opens, or gets more painful, red, warm or swollen.
• Anything leaks from the wound.
• A fever, or a stiff neck.
• A headache that is new, or worse, or comes with throwing up.
• Confusion, or trouble thinking clearly.
• A sudden change in vision.
• Sleeping much more than they are awake.
• A fall, or a hit to the head.
• Pain that the pain medicine is not touching.

When to call an ambulance. These cannot wait:

• They are not breathing properly.
• You cannot wake them.
• A seizure that is their first, or that lasts more than five minutes, or that runs straight into another. (Not every seizure needs an ambulance. The seizure page below says which do.)
• They suddenly cannot speak, move, or see.
• Chest pain, or coughing up blood.

If you are not sure which list this is, call.

If they have a shunt, the same-day list is a right-away list. Get help right away, at any hour: call your team, or go to the emergency department. Signs a shunt is not working has the full list.

How long are you doing this for? The intense part is the first few weeks. Most people take a month or two to feel like themselves. The invisible part, the tiredness and the attention and the words, often runs on past that. Plan for longer than the discharge paperwork suggests. At the follow-up appointment, ask out loud: what should we expect this to look like in a month?

And you cannot do all of it. The person you are looking after has a whole team. You are allowed to call them. You are allowed to say you are not managing. Say yes when someone offers help.

Why am I having another operation?

Being told you need surgery again is a hard conversation, and it is not a sign that the first one failed.

The usual reasons are that a tumor has come back or grown, that what was left behind needs dealing with now, or that something needs relieving again. For some tumor types, more than one operation over the years is simply how it goes.

Ask what is different this time, and what the goal is now. The goal often changes between a first operation and a second one, and it is the thing worth being clear about before you agree to it.

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

Two different answers come out of this operation, at two different speeds.

How much came out comes from the scan in the first few days. Your surgeon or a member of the team goes through it with you.

What the tumor actually is comes from the lab, and it takes longer. The tissue is examined, then usually tested for gene changes, and the full answer arrives in stages over days to weeks. Waiting for your pathology results explains what is happening in that gap and why the name can change while you wait.

When the report comes, your pathology report, part by part goes through the document. The words on your gene results takes the short words on it one at a time.

Your case may also go to a tumor boardtumor board: A meeting where specialists talk through one person's case together: the surgeon, the cancer doctor, the lab, and whoever read the scans. You are not there. What they decide is advice your own doctor goes through with you. See the glossary.

A tumor board is a meeting where specialists look at one person's case together: surgeons, cancer doctors, the lab, and the people who read scans. It tends to happen when a case is complicated or something is hard to read.

You do not go to the meeting. Afterwards, the doctor who knows you best explains what was said.

What they decide is advice, not an order. The choice is still yours. Because you are not in the room, tell your team what matters to you before it happens, so it is taken into account.

Before you leave the hospital, ask who will give you the results, roughly when, and whether that will be in a clinic or by phone. Ask one more thing: will it appear in your online records first? For many people it does, and reading it alone on a phone is a hard way to find out. If you would rather hear it from a person, say so, and ask them to call you when it lands.

What to ask your team

• What is the goal of my operation: to take it all out, to take some out, to relieve pressure, or to get tissue?
• What is next to my tumor, and what could I lose?
• Will you use mapping or monitoring during the operation?
• How much of my hair will be cut, and where will the scar be?
• Will I be scanned afterwards to see how much came out, and when?
• How long in intensive care, how long in the hospital, and am I going home or to a rehab unit?
• If something is not working when I wake up, how will we know whether it is temporary?
• Which of my medicines am I going home on, and which one is being reduced?
• Who do I call after I go home, and what counts as calling today rather than waiting?
• When will we know what the tumor is, and will I need more treatment after this?

Where to go next

• How tissue is taken if what you are having is a biopsy rather than an operation to remove the tumor.
• Waiting for your pathology results for what happens to the piece of tumor that was taken out, and why the wait is what it is.
• Your pathology report, part by part once the document itself arrives.
• The words on your gene results for IDHIDH gene change: A small change in a tumor's IDH gene. It is the first thing your team looks at when naming an adult glioma, and it can affect which treatments are offered. Your pathology report says whether your tumor has it. See the glossary, MGMTMGMT promoter methylation: MGMT is a gene whose protein repairs damage to a tumor's DNA. Methylation turns it down. Your report says how much, and your team uses that when they choose chemotherapy. The line between high and low is not settled. See the glossary, 1p/19q1p/19q co-deletion: Two pieces of two chromosomes are gone. They are gone from the tumor cells. A glioma can have this change. If it has an IDH gene change too, it is called an oligodendroglioma. See the glossary and the rest, one at a time.
• Your MRI scan, the scan before this and all the ones after.
• Awake brain surgery, and what you do during it if your surgeon wants you awake for part of the operation.
• What to do when someone has a seizure, worth reading before you need it.
• Get help now if you need to talk to a person today.