Shunts and hydrocephalus: when fluid cannot drain

A tumor can stop the fluid around the brain from draining. A shunt is a thin tube that drains it somewhere else. What the operation involves, and what recovery is like. Why some people need it fixed or replaced. And the signs it has stopped working, which need help right away.

The short version

A tumor can block the fluid that flows around the brain. When that happens, the fluid builds up and presses on the brain. An operation can put in a shunt, which drains the extra fluid to another part of the body. Once you have one, the most useful thing to know is the list of signs that it has stopped working, because those need help right away. Your team can tell you whether yours is likely to be for a while or for good.

What is it?

A shunt is a thin, soft tube that drains extra fluid away from the brain.

Your brain sits in a clear fluid. The fluid is made inside the brain, flows through small spaces, and drains away. When it builds up because it cannot drain, the name for that is hydrocephalus.

The top end of the tube sits in one of those fluid spaces. A small valve sits under the skin, usually behind the ear, and lets fluid out when the pressure is too high. The rest of the tube runs under the skin, down the neck and chest, into the belly, where the body soaks the fluid up. Less often, it goes to the heart instead.

Once it is in, the whole shunt is under the skin, so it usually cannot be seen.

Why would I need one?

There are two ways the build-up can happen.

• Something blocks the way out. The fluid is made as usual, but a tumor keeps it from getting through. Doctors call this obstructive.
• The fluid is not soaked back up. Nothing is blocking it, but the body does not take it back in as it should. Doctors call this communicating.

A shunt is not the only answer. The American Cancer Society says taking the tumor out can often help, and that there are other ways to drain the fluid too. One is a temporary drain, a small tube that lets the fluid out of the head for a while. Another is an operation called an endoscopic third ventriculostomy, or ETV, which makes a small new path for the fluid inside the brain instead of using a tube. The American Association of Neurological Surgeons says it suits a limited number of people. Ask which of these fits you, and why.

What happens, step by step

1. You are asleep for the operation.
2. A small cut is made on your head, usually behind the ear, and another on your belly. There may be a few more small cuts on the way, in the neck or near the collarbone.
3. The top end of the tube is passed into a fluid space in the brain, through a small opening in the skull.
4. The valve goes in under the skin, usually behind the ear.
5. The rest of the tube is passed under the skin down to the belly.
6. You wake up in a recovery area, then move to a hospital room. You may need to lie flat for the first day.

How long does it take?

The operation takes about an hour to an hour and a half. The American Cancer Society says about an hour, and MedlinePlus says about an hour and a half.

The American Cancer Society says the hospital stay is usually one to three days, depending on why you needed it and how well you are otherwise.

Recovery takes longer than the stay. One UK neurosurgery center tells its patients they should feel stronger after about three to six weeks.

What does it feel like?

Sore and tired at first.

The tiredness can be a surprise. The same UK center warns people they may be surprised at how tired they feel once they are home.

The cuts are sore for a while. The skin around the belly cut can feel numb or itchy, or have shooting pains, as it heals.

You may be able to feel it. Once the swelling goes down, you may feel the valve under the skin behind your ear. If you are thin, you may feel the tube in your neck. That is normal.

Normal recovery gets slowly better. A headache that is getting worse, sleepiness that is getting deeper, or pain that keeps growing is not recovery. It is a warning sign, and the list is further down this page.

Is it for good?

The American Cancer Society says shunts can be temporary or permanent. The Hydrocephalus Association, writing about hydrocephalus in general, says you will need one for the rest of your life. Ask your team which yours is likely to be.

A shunt can stop working. The National Institute of Neurological Disorders and Stroke says a person may need several operations over their lifetime to repair or replace one.

The weeks after it goes in are worth watching. In one study in Norway, of adults who had a shunt put in after brain tumor surgery, the shunts that stopped working in their first three months all did so within about five weeks of going in. Keep the warning signs somewhere you will see them during that time.

Signs a shunt is not working

If you have a shunt and any of these happen, get help right away, at any hour: call your team, or go to the emergency department.

• A headache, especially a new one or one that is getting worse.
• Nausea or throwing up.
• Getting sleepier, or being hard to wake or to keep awake.
• Confusion, or trouble thinking or concentrating.
• Blurred or double vision, or light hurting your eyes.
• Losing your balance, or being clumsier than usual.
• A sore neck or sore shoulders.
• A seizure.
• Changes in mood or behavior, or seeming withdrawn.
• Redness, soreness or swelling along the line of the tube, or fluid leaking from a cut.
• A fever.
• Pain in your belly.
• The problems you had before the shunt coming back.
• In a baby: a bulging soft spot on the top of the head, a head that is growing fast, eyes fixed downward so the white shows above the colored part, or being unusually fussy or sleepy.

Some things are an ambulance call, shunt or not. Call 911, or your local emergency number, if someone cannot be woken, is not breathing properly, has a first seizure or one that lasts more than five minutes, or suddenly cannot speak, move, or see. What to do when someone has a seizure has the seizure steps.

If you are not sure, go. The Hydrocephalus Association says to see a doctor or go to the emergency department even when the symptoms do not seem to be about the shunt. Some problems come on slowly and some come on fast.

When you call, say what the headache is like. A headache that gets worse when you sit up or stand, and eases when you lie down, can mean the shunt is draining too much. One that is worst in the morning or after lying down can mean it is draining too little. Either kind still means getting help right away.

Other risks of the operation

Like any brain operation, it has risks. They include bleeding or a clot in the brain, swelling, infection, fluid leaking under the skin, damage to brain tissue, and seizures. Later on, the tube in the belly can also make a hole in the bowel.

Ask your surgeon how likely each one is for you.

Living with a shunt

Tell anyone doing an MRI that you have a shunt, and which kind. Some valves are fixed. Others are adjustable, which means a doctor can change the setting from outside the head with a magnet. The magnet in an MRI can change an adjustable valve's setting, so ask whether yours needs checking afterwards. Scan staff need its make and model to know how to scan you safely.

Keep magnets a little way from an adjustable valve. The FDA suggests keeping things with magnets in them at least two inches from the valve, such as phones, tablets, headphones and earbuds, and using the ear on the other side for calls and earbuds. It does not tell people to stop using them.

Ask your team about everyday things, like showers, baths, swimming, flying and sports, and how to look after the cuts while they heal.

What you need first

• Why you need it, and whether anything else would do.
• The details of your shunt and valve, written down before you leave the hospital.
• Your team's after-hours number.
• The warning signs, where everyone at home can see them.

For the person alongside 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.

A shunt is small, and keeping an eye on it is a big part of the job.

Learn the warning signs as well as the person with the shunt does. Someone who is getting very drowsy may not be the one who notices, or the one who calls.

Look at the cuts in the first few months. The Hydrocephalus Association says infections are most likely one to three months after the operation. Redness, swelling or fluid leaking along the tube needs help right away.

With a baby or young child, go by the change you see. A child may not be able to say anything is wrong, so fussiness, sleepiness or losing a skill they had counts as a warning sign.

Keep the shunt's details with you when you go out. If you end up in an emergency department, the staff may want to know what kind of shunt it is.

Why do I need another operation?

Because a shunt can get blocked, get infected, move, or break. Fixing it often means another operation. Sometimes only the part that stopped working is replaced, and sometimes the whole shunt is.

An infected shunt is usually taken out. The Hydrocephalus Association describes a temporary drain while antibiotics clear the infection, for about 10 to 14 days in the hospital, and then a new shunt.

Ask your team what the plan would be if yours ever needed changing.

Who decides, and how will I hear?

Your neurosurgery team decides whether you need a shunt, and which kind.

After it is in, scans and X-rays are how they check it is working. Ask how often you will be seen, and how you will hear the results.

What to ask your team

• Why do I need a shunt, and is it likely to be for a while or for good?
• Could a temporary drain or an ETV do the job instead?
• What kind of valve is it, and is it adjustable?
• Where will the tube run, and what will I be able to feel?
• Who do I call at night if something on the warning list happens?
• Does it change anything about MRI scans, phones or headphones?
• What about showers, swimming, flying and sports?
• How often will it be checked, and how?

Where to go next

• Brain surgery for the operation to take a tumor out.
• MRI for what to tell the scan staff.
• CT scan for a scan used to look at the fluid spaces.
• Follow-up scans, and what the results mean for how scans are read over time.
• What to do when someone has a seizure for the seizure steps.
• Get help now if you need to talk to a person today.