Spinal cord tumor

A tumor growing in or pressing on the spinal cord. It is not a brain tumor. Why most of these grow slowly, the small set of signs that mean going in now, what the operation turns on, and what living with it actually takes.

The short version

A spinal cord tumor is a growth in or pressing on the spinal cord. It is not a brain tumor, and the words on your report will be different from the ones on a brain tumor page. Most tumors that start here grow slowly, often causing vague trouble for months before anybody finds them. Surgery is the main treatment for one that started here. Whether all of it can come out depends on whether it has a clear edge. Some signs mean calling your team the same day. Some mean calling right away. A few mean the emergency room. They are in their own section below.

What is a spinal cord tumor?

Your spinal cord is a thick bundle of nerves running down inside your backbone. It carries messages between your brain and the rest of your body. A tumor here grows in the cord itself, or beside it, or in the bone around it and presses in.

This is not a brain tumor. The brain and the spinal cord are the two parts of one system, called the central nervous system. The same kinds of specialists look after both. Research about them often appears together. But this is a different place in the body, with its own names and its own treatment. A page about brain tumors will not answer your questions.

There are two quite different situations, and almost everything on this page depends on which one is yours.

• A tumor that started here. Doctors call this a primary tumor. Most of these grow slowly.
• A cancer that started somewhere else and has spread to the spine. Doctors call this a secondary tumor, or a metastasis. These usually move faster, and the section on when to get help is different for you.

If you do not know which yours is, that is a good first question for your team.

Is it cancer? What does its grade mean?

Many of these tumors are not cancer. A growth beside the cord is often benign. That means it stays where it is instead of seeding elsewhere. It can still cause real trouble, because the space it grows in is narrow and what it presses on matters.

A grade describes how fast a tumor is likely to grow, not how serious your situation is. A grade is now written as an ordinary number, so grade 2 rather than grade II.

Some of these tumors carry no grade at all, and that is an answer rather than a gap. The rules changed in 2021, and for several kinds the people who write them decided a grade would not help. If your report has a name and no number beside it, nothing is missing. Ask your team to read your report with you.

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

Where it sits decides almost everything, so this is worth understanding once. Doctors sort these tumors into three places.

• Inside the cord itself. These grow in the substance of the cord, among the nerve fibers.
• Inside the covering, but outside the cord. A thin covering called the dura wraps the cord. A tumor can sit inside that wrapping and press on the cord from outside it.
• Outside the covering. Usually this is cancer that has spread from somewhere else, most often from the lung, breast, prostate, kidney or thyroid.

This is a surgeon's way of describing anatomy, not a grading system. It is why the honest phrase is in or pressing on the cord. A growth sitting beside the cord is not in it.

Which kind of tumor turns up in which place is fairly predictable. The ones that grow from nerve covering, and the ones that grow from the wrapping, usually sit inside the covering but outside the cord. The ones that start in the cord's own supporting cells usually sit inside the cord.

And the level decides which parts of you are affected. The cord serves different parts of the body at different heights. High up, the arms are involved. Lower down, it is the legs, the bladder and the bowel. The middle part of your back is the narrowest stretch of the whole canal.

Starting from where it sits, and two honest limits on that. Where your tumor is, and what that changes is arranged by place rather than by diagnosis. Its list of regions was written for the head. So was its list of urgent signs. The page says both of those out loud, and each time it sends a cord reader back here. What is left over is still yours. It says why it has no list of which places are dangerous. And it has the questions to put to a surgeon about a place.

What symptoms does it cause?

Pain is usually the first thing people notice, and it has a pattern worth knowing. It is often in the back or neck. Two things set it apart from ordinary back pain. It is not explained by an injury or by what you have been doing. And it is often worse at night, or when you lie down. Over time it can become bad even at rest.

After the pain, altered feeling tends to come next, and then weakness.

• Numbness, tingling or a burning feeling, often in both arms or both legs.
• Weakness, or limbs that feel heavy.
• Trouble walking, or being unsteady. People often put this down to clumsiness at first.
• Changes in the bladder or the bowel.

Those changes to the bladder and bowel usually come later rather than first, so waiting for them is not a good way to decide anything.

Because this builds slowly, many people have symptoms for months, often a year or more, before anyone finds the cause. That is ordinary here, and it is not something you missed.

When a spinal cord symptom means going in now

These signs are the spinal cord's own, and two of them change what you should do.

If your cancer has spread to your spine, some new signs mean calling your team right away or going to the emergency room. They are new weakness in your legs, new numbness, new trouble walking, or losing control of your bladder or bowel. The American Cancer Society calls pressure on the cord an emergency. It says that untreated, it can cause paralysis. Do not hold this until your next appointment, and do not wait to see whether it settles.

If your tumor started here, new weakness in your legs, new numbness or new trouble walking are a same-day call rather than a trip to the emergency room. Call your team today about those three, rather than at the next routine visit. Most tumors that start in or beside the cord grow slowly, and the patient organizations that write about them ask you to be seen rather than to go to the emergency room. Losing control of your bladder or bowel is not on that list because it is more urgent, not less. The next paragraph says why.

But one picture is emergency care now, whichever kind of tumor you have. Go to the emergency room for new trouble controlling your bladder or bowel. Go for new numbness around the area you would sit on. And go for weakness that is getting worse over hours or days. Cleveland Clinic says to go at once for that picture, and names tumors among its causes. That surgery is usually needed within a day or two of the symptoms starting. That is why timing matters more here than anywhere else on this page.

Bladder and bowel changes are never less urgent than weakness. If you are unsure which of these applies to you, call your team and describe what has changed.

The list below is the general one, written for any tumor. Some of it is about the brain rather than the cord, so not all of it will be yours. The rules about seizures, about a fever during chemotherapy, and about a shunt are worth knowing if any of those apply to you.

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.

How do doctors find out it is this?

The test that finds it is nearly always an MRI scan. MRI scans covers what having one is like.

For a tumor that started here, the operation is usually where the exact answer comes from. The piece taken out goes to the laboratory, so the diagnosis and the treatment often arrive together. If your cancer spread to the spine, the picture is usually clearer already, because the first cancer has a name. Ask your team whether a sample is part of the plan for you, and what they expect to learn from it.

Your pathology report walks through the document you get back, and waiting for results is about the gap in between.

What do the words on my report mean?

The rules for naming brain tumors changed in 2021. If your paperwork was written before that, some of its words are no longer used.

This matters more than it sounds. People read an old report next to a new one, see two different names, and think somebody made a mistake. Usually nobody did. The tumor did not change. The way doctors write it down changed.

Three changes affect almost every report.

• Roman numeral grades, such as grade II or grade IV on an older report. These are now written with ordinary numbers instead: grade 2, grade 4. Nothing about the grade itself changed. Only the way of writing it did.
• Gene results are now part of the name. Older reports named a tumor mostly by how the cells looked. A name written now usually has a gene result built into it. That is why a newer report can look longer and more technical than an older one about the same tumor. You may also see NOSNOS: Short for "not otherwise specified". It means the gene tests needed to name the tumor fully were not done or could not be done. Ask your team whether they can be. See the glossary or NECNEC: Short for "not elsewhere classified". The tests were done, but the results do not match any named tumor type. Ask your team what it means for your plan. See the glossary written next to your diagnosis. These say something about the testing, not about how serious the tumor is. NOS means the tests needed to be more exact were not available. NEC means testing was done, but the results did not fit any defined group neatly.

Seeing an older name on your own report does not mean it was wrong. It means it was written under the old rules. If you are holding an old report and a new one and they do not match, that is a good thing to take to your team and ask about.

Two different things are both called grade 1

This one trips people up, and it is worth reading twice. If you have had an operation, you may be holding two documents that both use the word grade, and they mean completely different things.

• A tumor grade describes how the tumor is likely to behave.
• A Simpson grade describes how completely the surgeon was able to remove the tumor and the covering it was attached to. Grade 1 there means the tumor and the affected covering and bone all came out.

So "grade 1" on an operation note can describe a thorough operation rather than your tumor. If you see the word twice and it does not add up, that is the likeliest reason, and it is worth raising with your team.

How much of the covering needs to come out is genuinely unsettled. Surgeons do not all agree, the studies disagree with each other, and some find no difference at all. If your team has a view, it is reasonable to ask what it is based on.

If your paperwork says something different

• A name with no grade beside it. For several kinds, including the ones that grow from nerve covering, the 2021 rules print no grade. Older paperwork sometimes gives one anyway. Acoustic neuroma explains that in full for the nerve covering kind.
• A grade in Roman numerals. Older paperwork writes grade 1 as grade I, and it is the same grade.
• A name that mentions where it is. Some names now include the part of the spine the tumor is in. The same kind of tumor can behave differently in different places.

Ependymoma has the detail for the commonest kind that starts inside the cord, including the one whose grade was changed in 2021.

How is it usually treated?

For a tumor that started in or beside the cord, surgery is the main treatment, and for many people it is the only one they need. If your cancer spread to the spine, the plan often starts differently: a steroid to take the pressure down, then radiation or surgery depending on the tumor and on how quickly things are changing.

What the operation can achieve turns on one thing: whether there is a clear plane between the tumor and the cord. Finding and following that edge is the key step of the operation. Some tumors have one, and can often be taken out completely. Others grow into the cord with no clear boundary. Taking more then carries more risk of harm. This is why two people with tumors in the same place can be offered quite different operations. It is a fair question to ask directly: does mine have an edge you can work along?

The team watches the cord during the operation. Monitoring nerve signals while operating is standard here, and its purpose is to warn the surgeon before damage is done rather than after.

Radiation is not routine. It is used when some of the tumor had to be left behind, or for the faster-growing grades. Radiation therapy covers what a course involves. Your team sets the dose and the timing.

A steroid is often started quickly when a tumor is pressing on the cord, to bring down swelling. It treats the pressure, not the tumor. Steroids covers what taking one is like and the rules about stopping.

Some tumors are watched rather than treated. A small one causing no trouble may be followed with scans instead. Watching a tumor, step by step covers what that plan feels like day to day.

For some of these there is no agreed best treatment, and saying so is more useful than pretending. For tumors that grow into the cord without a clear edge, specialists openly disagree about how much surgery helps and when to operate. That is a reason to ask what your team thinks and why. It is also why a second opinion is reasonable rather than rude.

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.

Clinical trials covers how to think about a trial if one is mentioned.

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

The dip after surgery

Many people are worse for a while after this operation before they are better, and almost nobody is warned. New or increased weakness in the days after surgery is common enough to have a name, and it often settles over weeks to months. The emergency rule above still applies after your operation. Weakness that keeps getting worse, new numbness around the area you would sit on, or new trouble controlling your bladder or bowel means the emergency room now, whichever kind of tumor you have. A dip being common does not make those signs something to sit at home with.

It does not always settle completely, and anyone who tells you it always does is going further than the evidence. The studies disagree, partly because they are counting different groups of people. What is fair to say is that a dip is common, and that it can go on improving for months. Where you end up is not known on the day you wake up.

So ask before the operation: what should I expect in the first days, what would worry you, and who do I call once I am home?

Rehabilitation

Rehabilitation is an ordinary next step here, not a sign anything went wrong. It is team-based care aimed at function: strength, balance, transfers, and the ordinary activities of a day. Inpatient rehabilitation usually means taking part in at least three hours of therapy a day, five days a week.

The team has a shape worth knowing. A rehabilitation doctor leads it. Physical and occupational therapists work on movement and on daily tasks. Rehabilitation nurses teach bladder and bowel care. A psychologist and a social worker are part of it too. The social worker usually plans what happens when you go home.

Ask about rehabilitation rather than waiting to be offered it. People with spine tumors are not routinely referred to rehabilitation units in the way that people with similar problems from other causes are. That is documented, and it is a reason to raise it yourself.

Everyday life: work, moving around, and the things nobody mentions

Much of what helps here was worked out for people whose spinal cord was damaged in other ways. The cause is different and the problem is the same one, so that is where the good practical material comes from. Your own team can tell you what applies to you.

Bladder and bowel care. If the nerves to your bladder are affected, the signals between it and your brain do not arrive properly. A bladder program is put in place because of a nerve problem. As one patient organization puts it, it should not be confused with potty training. A bowel program has four parts: timing, diet, medicines, and the techniques that help. A doctor or nurse designs it with you rather than for you. Infections are easier to treat when caught early, so report one rather than waiting.

Pain. Nerve pain is common and people describe it as burning, electric, stabbing or tingling. Ordinary painkillers often do not touch it, which is not a sign that you are imagining it. The honest framing is the one a rehabilitation service uses. It is hard to get rid of chronic pain completely. But it can usually be reduced enough that it does not take over your life. If the first treatment does not work, that is common. It is not the end of the list.

Stiffness and spasms. Muscles can stiffen or jump on their own. Stretching and range of motion exercises at least twice a day help, and medicine can be added when they are not enough. Getting rid of it completely is not always the aim, because that stiffness sometimes helps with standing, transferring or gripping. It is a balance, and it is worth telling your team which spasms are actually a problem for you.

Skin. This is the one people underestimate. Normally, feeling tells you to shift position long before your skin is damaged. After the cord is affected, that signal is reduced or gone. So it becomes a deliberate job. The usual advice is to relieve pressure for about a minute every ten to fifteen minutes while you are up. In bed, turn every two hours or less. And look over your whole body at least twice a day. Special cushions and mattresses reduce pressure. They do not eliminate it, and no equipment does.

Work and driving. Both depend on what you can do rather than on the diagnosis, and both are worth raising early. Driving rules differ from place to place, so ask your own team and licensing authority rather than relying on any page.

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

Scans go on for a long time here, and there is a reason. These tumors can come back years later. They can start to come back without causing any symptom at all. So a scan is the thing most likely to notice first. For ependymoma, the commonest kind inside the cord, a tumor that comes back most often does so where the first one was.

Follow-up scans covers what the reports mean and the part most people find hardest, which is the wait rather than the scan.

Tell your team about a new symptom when it happens rather than saving it for the next appointment.

If it comes back, or changes

It does not mean anyone made a mistake. Coming back late is a known pattern with these tumors, and it is exactly why the scans carry on for years.

What happens next depends on where it is, what was done last time, and what can be done safely now. Surgery again is sometimes possible. Radiation may be offered if it was not used before. Ask what the goal of any new treatment is. The answer is not always the same as it was the first time.

Did I cause this?

If your tumor spread to the spine from a cancer elsewhere, the answer below is written for a different question than yours. You may find yourself going back over whether it was caught late instead. Spread to the spine is a feature of the illness, not evidence that anybody was slow. The people looking after you are used to that question, and it is worth asking out loud.

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.

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.

Four things specific to this diagnosis.

Know the signs that mean the emergency room. New trouble controlling their bladder or bowel, new numbness around the area they sit on, or weakness that keeps getting worse means going now rather than waiting for an appointment. You may well be the one who notices first.

The practical load here is physical, and it is not small. Helping somebody move, transfer or turn is a daily job, and people who do it often hurt their own backs. Ask to be shown how to do it before you are doing it alone, and ask whether equipment would help. That is not a luxury request.

You may be the one who notices the skin. Looking over the parts somebody cannot see or feel is one of the few jobs that needs another pair of eyes. Catching a red patch early prevents a long problem.

The honest limit of the advice. Most of the good practical material on bladder, bowel and skin care was written for people whose spinal cord was damaged in other ways. It is used because the problem is the same one, not because it was studied in people with tumors.

What to ask your team

• Did my tumor start here, or has it spread from somewhere else?
• Where exactly is it, and is it inside the cord or pressing on it from outside?
• What is its full name on the report, and is there a grade?
• Is there a clear edge between the tumor and my cord?
• What is the goal of the operation: taking all of it, or taking pressure off?
• What should I expect in the first days after surgery, and what would worry you?
• Will I be referred for rehabilitation, and who decides?
• Which symptoms mean calling you today, which mean calling right away, and which mean the emergency room?
• Who do I call after hours, and what is the number?
• How long will the scans go on, and how often?
• Is radiation likely for me, and if so, why?
• Is there a clinical trial for this kind?

Where to get support

• Getting help now, which lists who to call and when.
• The Christopher & Dana Reeve Foundation has practical guides on bladder, bowel, skin and pain. It also runs an information service, staffed by people who answer questions like these daily.
• The Model Systems Knowledge Translation Center publishes plain-language factsheets on rehabilitation, pain, spasticity and daily life.
• Ependymoma and acoustic neuroma if your report names one of those.
• Your team's specialist nurse. On most days they are the quickest route to an answer about your own case.