Hemangioblastoma

A slow-growing tumor that is not cancer, full of tiny blood vessels. The tumor is usually found low at the back of the brain or in the spinal cord. What it is, and why a fluid pocket often causes the symptoms. The inherited condition that about 1 in 4 people with one of these have. And how it is treated and watched.

The short version

This is a tumor that is not cancer, and it is full of tiny blood vessels. It grows slowly. The usual place is the lower back part of the brain. It also turns up in the spinal cord.

Often the trouble comes from a pocket of fluid beside it, not from the tumor itself. The symptoms section explains why that matters so much here.

About 1 in 4 people with one have an inherited condition called von Hippel-Lindau, or VHL. Some studies put it closer to 1 in 3. It is worth asking your team about a test for it, even if nobody in your family has it. The answer changes what happens next.

The main treatment is an operation to take the solid part out. Some people have a focused kind of radiation instead. Some small tumors that cause no trouble are only watched.

Bleeding from one of these is rare, but a sudden, very bad headache means calling 911. The other warning signs are in the symptoms section.

What is a hemangioblastoma?

It is a lump made of cells and a tangle of very small blood vessels. Under a microscope, it is packed with them. That is where the long name comes from.

It often comes with a pocket of fluid. On a scan, doctors often see a pocket with a small solid lump in its wall. Two reviews of this tumor describe that as the usual picture. The solid lump is the tumor. The pocket is fluid it makes.

There are two groups of people who get it. Most people have one tumor, found as an adult, often in middle age. A smaller group has VHL. They tend to be younger when the first one is found, and they can get more than one over the years. This page says which group it means whenever that matters.

Is it cancer? What does its grade mean?

No. It is not cancer. Cancer Research UK and Cleveland Clinic both say so. It stays where it started.

Not cancer does not mean harmless. Cleveland Clinic says it can still grow big enough to press on the brain or spinal cord around it and cause serious problems. That is why it is taken seriously, and why it is treated.

It is classed as grade 1, the lowest grade. Two reviews of this tumor say so. Grade 1 describes a tumor that grows slowly. It is not a promise about any one person.

Where does it grow, and why does it cause these symptoms?

Most often in the cerebellum. That is the lower back part of the brain, and it runs balance and coordination. Cancer Research UK says most start there.

Sometimes in the brainstem, which joins the brain to the spinal cord and runs things like swallowing and breathing.

Sometimes in the spinal cord. Here it presses on the nerves that run to the arms and legs. In VHL, the VHL Alliance says the neck is the most common part of the spine for one.

People with VHL can also get one at the back of the eye. That kind is looked after by an eye doctor. It is one reason eye checks are part of VHL care.

Why the pocket matters. NORD, a rare disease group, says the fluid pocket often causes more symptoms than the tumor does. Pacific Neuroscience Institute says these tumors usually grow slowly, but the fluid part can get bigger more quickly, so symptoms can start in a hurry. Low at the back of the brain, a growing pocket can also block the fluid that drains around the brain, so pressure builds up. The general part below explains how that works.

Most people are told what they have long before anyone explains what it is doing. These are the ways a tumor in the brain causes symptoms. They overlap, and most people have more than one going on at once. Which of them apply to you depends on what your tumor is and where it sits.

It takes up room. The skull is a closed box. It cannot stretch. So anything new inside it has to push on something. The tumor and any swelling around it together take up space and press on nearby parts of the brain.

It can make the brain around it swell. This one surprises people, and it is worth understanding. Fluid builds up in the brain tissue near the tumor. That swelling plays a major part in deciding what symptoms you get. Some of what you are feeling may not be the tumor itself. It may be the swelling around it. That is why medicines that bring swelling down can change how somebody feels, without the tumor being any different than it was.

Pressure can build up inside the head. When the pressure inside the skull rises, there is a pattern doctors watch for: headaches that are worse in the morning, feeling sick to your stomach and throwing up, odd eye movements, seizures, and being confused or very drowsy. Not everybody with raised pressure has all of it, and some people have almost none of it. If this pattern is new for you, it is worth a phone call rather than a wait. If you have a shunt, it means getting help right away.

It can set off seizures. A tumor and the irritated brain around it can upset the normal electrical activity of that part of the brain. For some people a seizure is the first sign that anything is wrong.

It can block the flow of fluid. The brain makes a fluid that circulates around it and drains away. A tumor sitting in the wrong place can block that flow, so the fluid backs up and the pressure goes up. This is more likely with tumors near the narrow channels the fluid passes through. It can be treated, and the usual treatment is a shunt. That is a thin tube that carries the fluid to another part of the body, where it is absorbed. It is the word your team will use. Shunts and hydrocephalus covers what having one is like, and the signs it has stopped working.

Why your symptoms are the ones you have

The short rule: the symptom tells you where, the scan tells you what. A tumor disturbs whatever job the brain does in that spot, so where it sits decides what you notice.

There is one exception, and it is the fluid. When the flow is blocked, what you notice is the pressure rather than the spot: headaches worse in the morning, throwing up, double vision, and feeling unsteady. Those signs are much the same wherever the blockage sits, so they tell you the pressure is up, not where the tumor is. If that is your pattern, the part above called It can block the flow of fluid is the one about you, and it says what can be done. If the pattern is new, the phone call above applies.

• Front of the brain. Personality, behavior, planning, motivation, and on one side, producing speech.
• Side of the brain, near the temple. Seizures, memory, and understanding what people say.
• Upper back part of the brain. Sensation, knowing where your body is in space, reading, writing and arithmetic.
• Back of the brain. Vision, and losing part of your field of view.
• Cerebellum, low at the back. Balance, coordination and walking.
• Brainstem. Double vision, facial weakness, and trouble swallowing.
• Deep in the middle, near the spaces the fluid runs through. A tumor here can block the flow, so what you notice is often the pressure rising rather than anything that points to the spot.
• The floor of the skull, below and behind the ear. Hearing, balance, and the nerves to the face. So hearing loss or ringing in one ear, dizziness, and numbness or weakness down one side of the face. Your team may call the whole floor of the skull the skull base. This spot is one part of it.
• Behind the eyes, at the base of the brain. Vision, and the hormones that set energy, weight, thirst and periods. In a child, growth and puberty too. Side vision is what usually goes first, so things start disappearing at the edge. Your team may call this the pituitary or the sellar region.

If something on this list matches what you have noticed, it is worth writing down and taking to your next appointment. Your team can tell you whether it fits where your tumor actually is.

This list is about what the place explains. The other half of the question is what the place changes: whether an operation is offered, how much of it can come out, and when the place makes something urgent on its own. Where your tumor is, and what that changes is that half.

What symptoms does it cause?

Which ones you get follows the place it grows.

In the lower back part of the brain, signs are usually headaches, feeling sick to your stomach, throwing up, feeling dizzy, and trouble with balance. You may walk unsteadily, or feel clumsy. Any of these that is new is worth a call to your team, and the next part says which ones cannot wait.

In the brainstem, symptoms can be more serious, because so many nerves pass through that small space. The Brain Tumour Charity says signs from a tumor here can need emergency care. It does not say which signs or where to go, so treat anything new here as a call to your team today. And trouble breathing or choking is an ambulance call however it started, fast or slow. The ambulance list below, and the two rules after it, say what else cannot wait.

In the spinal cord, the signs are in the body rather than the head. Columbia lists numbness or pins and needles in the arms or legs, clumsy hands, weakness, trouble walking, and changes in how the bladder and bowel work. Macmillan and Brain Tumour Research both add new back or neck pain to that list.

Sometimes a blood test finds too many red blood cells. This tumor can make a hormone that tells the body to make more of them. It happens only sometimes.

When to get help fast

Something to know first. Sixteen pages written about this tumor, or about the brain and spine tumors of VHL, were read and used for this page. They come from hospitals, brain tumor charities and rare disease groups. Not one of those sixteen ties a warning sign to 911 or to an emergency room. Three further pages would not open for us. Those three are unknown: they may say something we have not seen. We also left out one page family whose rules we are not allowed to reuse. So ask your own team which signs mean calling them, and which mean the emergency room, and write the answer down. Nobody else can give you that list for your own case.

So no rule below is a rule about the tumor. Each belongs to a warning sign, and each names who gives it.

When to call for help right now

Some things should not wait for the next appointment.

Call an ambulance for any of these. Call 911, or your local emergency number:

• A first ever seizure.
• A seizure that lasts more than five minutes.
• One seizure right after another, with no waking up in between.
• Someone who cannot be woken.
• Trouble breathing, or someone who seems to be choking.
• Suddenly not being able to speak, move one side, or see.

A seizure like the ones you usually have, that stops on its own, is not an ambulance call. What to do during a seizure draws the line.

Call your team the same day for any of these:

• A headache much worse than usual, or one that wakes you from sleep.
• Throwing up again and again.
• New weakness in the face, an arm or a leg.
• New trouble speaking, or understanding what people say.
• New confusion.
• Sleeping much more than being awake.
• A sudden change in your vision.

If you are having chemotherapy, a fever is its own rule. It means calling your team right away, at any hour, not waiting for the morning. An infection during chemotherapy can get dangerous fast, and it is treatable when it is caught early. The fever rule explains why, and what number your team will give you.

In the weeks after brain surgery, a fever is its own rule too, especially with a stiff neck or a bad headache. What comes after a craniotomy has the rest of that list.

If you have a shunt, the signs it has stopped working are their own rule. For you, everything on the same-day list above is a right-away call instead, and so are a few other signs. 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.

If you are not sure whether to call, call. Nobody on that team minds a phone call that turns out to be nothing.

Same day means today, not the next clinic appointment. Ask your team now for the after-hours number, and put it somewhere you will find it at two in the morning rather than somewhere sensible.

What to do during a seizure has the step-by-step, and getting help now is the short version to keep on a phone.

This tumor adds two rules of its own.

A sudden, very bad headache, unlike any you have had. Bleeding from this tumor is rare. A study of it says so. But when a blood vessel in the brain breaks and bleeds, that is a kind of stroke. MedlinePlus lists a sudden, severe headache with no known cause as a stroke sign, and says to call 911 right away. The Brain Tumour Charity says a burst blood vessel needs medical help at once, without saying where to go. For this one headache, that beats the same-day rule for a bad headache in the list above.

If your tumor is in the spinal cord. New weakness, new numbness, unsteady walking, or new back or neck pain means calling your team today.

One group of cord signs is stronger than that, and it is the one to learn. Losing control of peeing or pooping, numbness in the parts of you that touch a chair, or weakness that is worse each hour: for those three, Cleveland Clinic says to get to an emergency room immediately, and it lists tumors as one cause. Those three beat every other rule on this page. Spinal cord tumors sets out why they are sorted this way.

How do doctors find out it is this?

Usually from a scan.

• An MRI scan with contrast dyecontrast dye: A liquid put into a vein before some scans. It makes certain tissues stand out, which helps show where a tumor is. It does not always show the whole of it. See the glossary. The solid part of this tumor lights up brightly on the scan, and the fluid pocket does not. That look is a strong clue.
• A scan of the whole spine as well, if VHL is possible, because tumors can be in more than one place.
• Sometimes an angiogram. A thin tube is passed into a blood vessel, and dye shows how much blood the tumor carries. UCLA says it is often used. It helps plan the operation.
• An eye check to look at the back of the eye, because of the eye tumors that come with VHL.

Ask about a VHL test

Ask for a VHL gene test, even if nobody in your family has VHL. Pacific Neuroscience Institute says anyone found to have this tumor should be checked for VHL. A review from the UK says testing is routine there for people found to have one before age 60, and should be thought about for everyone.

Why it matters. About 1 in 5 people with VHL are the first in their family to have it, MedlinePlus Genetics says. So a family with no history can still have it. And if you do have it, the plan changes: regular checks of other parts of the body, and a chance for your family to be tested too.

A genetic counselor can help you through it. Cleveland Clinic says one can explain what the result means for you and for any children.

What do the words on my report mean?

Hemangioblastoma. This is the name the World Health Organization uses.

Capillary hemangioblastoma, Lindau tumor, and angioblastoma. Older names for the same tumor. A review of this tumor says they are no longer the recommended names. Seeing one on an old report does not mean it was wrong.

Cyst, and mural nodule. The cyst is the fluid pocket. The mural nodule is the small solid lump in its wall, which is the tumor itself.

Stromal cells. The tumor cells. The report may say they look clear or foamy.

Reticular, or cellular. Two patterns the lab sees under the microscope.

Sporadic. The tumor is not linked to VHL.

VHL-associated. The tumor comes from VHL.

Clear cell kidney cancer, or renal cell carcinoma. You may see this named on the report as something the lab ruled out. Under a microscope, it can look a lot like this tumor, so the lab checks. It is mentioned because the two can look alike, not because you have it. If you are not sure which way your report reads, ask.

Grade 1. The grade section above says what it means here.

The pathology report explains the rest of the report.

How is it usually treated?

For a tumor that causes symptoms, an operation is usually the main treatment. Cancer Research UK calls surgery the main treatment for this tumor.

The operation

The aim is to take out the solid part. A review by surgeons who treat many of these tumors says that is the goal. Once the solid part is out, the fluid pocket usually collapses on its own.

The blood vessels are the main risk. Because the tumor is so full of them, bleeding during the operation is the thing surgeons plan around. The team will often study the blood vessels on scans first.

Some people have the blood supply closed off first. This is called embolization. Weill Cornell says it is done through the same thin tube used for an angiogram. The surgeons' review says it can have serious problems of its own, so it is weighed case by case. Not everyone has it. Ask your team whether it is part of your plan, and when it would happen.

Craniotomy covers an operation on the brain, and what the days after it are like.

Focused radiation

Some tumors are treated with one very focused dose of radiation. This is called stereotactic radiosurgery. A study of it names when it is used: for tumors that are hard to reach, for several tumors, or for one that comes back.

It works on the solid part, less on the pocket. A large review found it did less to shrink the fluid pockets. So if a pocket is what is causing your symptoms, ask your team what this treatment would and would not do about it.

Experts do not all agree on when radiation should come first. Ask your team why they suggest what they do.

A pill, for people with VHL

For adults with VHL, there is a pill called belzutifan. The FDA approved it in 2021. It is for brain and spinal cord tumors that need treatment but do not need an operation right away. It works by blocking a signal these tumors use to grow. Targeted therapy explains how drugs like this work.

It is not approved for a tumor without VHL. A 2026 report says whether it helps those tumors is not known.

It can harm an unborn baby. The drug's label says it must not be taken in pregnancy, and it can stop some hormone birth control from working. Ask what kind of birth control to use.

It can cause low red blood cells, and low oxygen. The label says both can be severe. Tell your team if you feel much more tired, short of breath, or dizzy.

Watching instead of treating

Some tumors are watched rather than treated. This is most common with VHL. The VHL Alliance says these tumors are usually not treated until they cause symptoms, or are growing fast enough to cause harm soon. Cleveland Clinic says the same can apply to anyone without symptoms. A very small one that is not growing may just be watched, Cancer Research UK says.

Watching is a plan, not doing nothing. It means scans on a schedule, and acting when something changes. Watch and wait explains how it works.

With VHL, the goal is to treat each tumor at the right time. Over a lifetime there may be several. The VHL Alliance says to look at all three choices, surgery, radiation and medicine, each time one needs treating.

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.

What is treatment actually like, and what is normal afterwards?

Balance can be off after an operation low at the back of the brain. That is the part of the brain that runs balance. A physical therapist can help you work on it, and the National Brain Tumor Society says exercises set for you are part of getting your footing back. Ask whether you will be seen by one.

New weakness or clumsiness that keeps getting worse is not the same thing. Call your team the same day for new weakness. If you have had surgery on the spinal cord, the emergency room rule above holds afterwards as well.

Make the home safer while you recover. The National Brain Tumor Society suggests things like grab bars and handrails.

If fluid was backing up before the operation, taking the tumor out may not be the end of it. A guide written for doctors says blocked fluid here needs an operation of its own, such as a thin tube to drain it, called a shunt. Ask your team whether that applies to you. Shunts and hydrocephalus is the page about having one.

If you take belzutifan, you will have regular blood tests. That is how your team watches for low red blood cells.

Everyday life

What everyday life looks like afterwards depends on where the tumor was, and on how your recovery goes. Some of what follows will not apply to you.

Being worn out is common for a while after treatment, and it is worth raising at each visit instead of putting up with it. Being much sleepier than usual is a different thing. That one can mean fluid backing up, so it is a same-day call, and a right-away call for anyone with a shunt.

Driving turns on two things: the law where you live, and how well you see and move. Ask your own team which of those affects you, and have your sight looked at before going back to the wheel. When what changed is your sight covers the kind of sight change that comes from pressure on the pathway for sight. If your tumor is at the back of the eye instead, your eye team is the one to ask about that.

With VHL, checkups become part of life. It helps to keep your scan and test dates in one place, and to bring the list to each visit.

Follow-up scans, and what to do while you wait

Everyone has follow-up scans. How often depends on which group you are in.

One tumor, taken out completely. Your team sets the schedule. Scans are more often at first, and then spaced out.

With VHL, checks go on for life. GeneReviews, a guide written for doctors, suggests scans of the brain and whole spine every 2 years from age 11, and eye checks from early childhood. Your team may suggest scans more often if you have tumors they are watching.

If you are pregnant or planning to be, tell your team. Studies disagree on whether pregnancy makes these tumors grow. GeneReviews says closer checks before and during pregnancy can be considered.

Follow-up scans goes through what the reports mean. Waiting for results is about the hard part, which is usually the waiting.

If it comes back

For one tumor that was taken out completely, it does not often come back. A review written for doctors says the chance is low when all of it was removed. If some was left behind, it can grow again, UPMC says, and scans are how that is found early.

With VHL, new tumors can appear as well. People with VHL usually get more tumors in the brain and spinal cord over the years, and The Brain Tumour Charity says tumors that come with VHL are also more likely to come back after surgery. A new one is not a sign that you did anything wrong. It is what the checks are for.

There are still choices. Another operation, focused radiation, or, with VHL, belzutifan. Ask what each one is meant to do.

Did I cause this?

Almost everybody asks this, usually in the first week, usually in private. It is worth answering plainly.

For most brain tumors, nobody knows the cause. That is the honest state of it. The exact cause of most brain and spinal cord tumors is not fully understood, and there are very few well established risk factors. Tumors start when genes that control how cells grow and divide are changed, and in most cases those changes happen by chance during a person's life. Not because of something done or not done.

Cell phones. They give off a kind of radiation called radiofrequency. It is not the same as the radiation in an x-ray. The energy is too low to damage DNA, and it is not known to cause cancer. The evidence so far is that using a cell phone does not cause brain tumors.

Stress. There is no scientific evidence that stress causes brain tumors, and no data linking stress to a higher chance of getting one. A hard year before a diagnosis is a hard year. It is not a cause.

Something you ate, or did not eat. No food and no diet is an established cause of a brain tumor. It is not on the list of known risk factors at all.

Something you passed on, or caught. Brain tumors are not contagious. Most are not inherited either. A small number of people do have an inherited condition that raises the risk, and if that applies to you, your team will raise it and offer to talk it through.

If you are turning this over at three in the morning, that is ordinary and it happens to nearly everyone. It is also worth saying out loud to somebody on your team, because they have answered it many times and they would rather you asked.

For this tumor, one part of that answer matters more than usual. The part above says a small number of people have an inherited condition. For this tumor it is not a small number: about 1 in 4 people with it have VHL. That is a change in a gene. It is passed on in families, or it starts new in a person. Either way, nothing you did caused it.

For a tumor without VHL, it was not passed on. MedlinePlus Genetics says the gene change in that tumor happens during a person's life, only in the tumor cells.

If you have VHL, each of your children has a 1 in 2 chance of having it too. GeneReviews says so. The VHL Alliance says children at risk can have the test as early as birth. A child who does not have the gene change does not need the lifelong checks.

What might happen over time

For the person caring for someone with this

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.

Three of them belong to this tumor in particular.

Learn the two rules in the symptoms section before you need them. A sudden, very bad headache means 911. With a tumor in the cord, one group of changes means an emergency room. Often it is the person nearby who spots these first.

After an operation low at the back of the brain, falls are the big risk at home. Clear the floor, add night lights, and be close by for the first showers.

If it is VHL, it is a family matter. You may be caring for someone and also wondering about your own test, or your children's. That is a lot to carry. A genetic counselor can help the whole family, not only the person with the tumor.

What to ask your team

• Is it one tumor, or are there others?
• Should I have a VHL gene test? Who can help me understand the result?
• Is the fluid pocket causing my symptoms?
• Do you recommend an operation, focused radiation, or watching it? Why?
• Will the blood supply be closed off before surgery?
• Was all of the tumor taken out?
• Which symptoms mean calling you today, and which mean the emergency room?
• How often will I have scans, and of which parts of my body?
• Will I see a physical therapist for my balance?
• If I have VHL, should my children be tested, and when?
• If I have VHL, is belzutifan an option for me?
• What number do I call at night or on a weekend?

Where to get support

• No group just for this tumor turned up in our search, other than the ones for VHL.
• The VHL Alliance has monthly calls for patients and caregivers, and a list of care centers its advisers have approved.
• VHL UK/Ireland runs a private online group for people with VHL.
• The National Brain Tumor Society has an online group called "Benign is Not Fine", for people with brain tumors that are not cancer.
• Getting help now, for the moments when reading is not what you need.