Hydrocephalus

Hydrocephalus is a condition where fluid builds up in the brain. This extra fluid affects the brain and the way it works.

When hydrocephalus damages the brain, it can cause symptoms like:

• headache
• nausea and vomiting (feeling and being sick)
• blurred vision
• drowsiness
• difficulty walking

Babies born with hydrocephalus (known as congenital hydrocephalus) often have certain physical features:

• an unusually large head
• a thin scalp with visible veins
• a tense or bulging fontanelle (the soft spot on top of a baby's head)
• downward looking eyes
• delayed development

Hydrocephalus from birth can also cause:

• muscle stiffness and spasms in your baby's lower limbs
• poor feeding
• irritability
• vomiting (being sick)
• sleepiness

Hydrocephalus that develops in childhood or adult life (known as acquired hydrocephalus) can cause:

• headaches that are often worse in the morning or wake you from sleep
• sleepiness
• confusion
• blurred vision or double vision
• neck pain
• nausea (feeling sick)
• vomiting (being sick)
• difficulty walking
• urinary incontinence (loss of bladder control)
• memory issues
• balance problems

• you or your child has symptoms of hydrocephalus that have come on very suddenly or quickly

• you think you or your child might have symptoms of hydrocephalus

Normal pressure hydrocephalus (NPH) usually develops slowly, over many months or years. It's more common in older people.

NPH can affect:

• how you walk (mobility)
• your urinary system
• your mental abilities

If you have NPH (normal pressure hydrocephalus), you might find it hard to take the first step when you walk. Some people say it feels as if they're frozen on the spot.

NPH can also make you shuffle instead of taking proper steps.

As the condition gets worse, you may fall more often and feel more and more unsteady on your feet. This can be worse when you turn.

If you have NPH (normal pressure hydrocephalus), you might have urinary incontinence. The symptoms can include:

• a frequent need to pee
• an urgent need to pee
• loss of control of your bladder

If you have NPH, you might:

• be slow to respond to questions
• react slowly to situations
• take longer to process information
• have difficulty remembering information

These symptoms may improve when NPH is treated.

Hydrocephalus can be congenital, which means it is present from birth. Doctors call this congenital hydrocephalus, and it may be linked to other health conditions, such as spina bifida.

Hydrocephalus can also happen when the normal pathways for brain fluid become blocked. Bleeding in the brain or a tumor can cause this. This type is called obstructive hydrocephalus.

Sometimes those pathways are narrower than they should be. This can cause triventricular hydrocephalus.

There is one more way it can develop. After bleeding or an infection in the brain, the brain may become less able to absorb brain fluid. This problem carries on even after the bleeding or infection has been resolved. This is called aresorbtive hydrocephalus.

Congenital hydrocephalus can sometimes be found during a regular ultrasound scan done before the baby is born. It can also be picked up when the newborn baby is physically examined.

The other types of hydrocephalus are diagnosed from a brain scan, which is normally a CT scan or an MRI scan.

Hydrocephalus can only be treated with surgery. Depending on your circumstances, you or your child may be offered a temporary treatment or a permanent one. The doctors looking after you will explain each option fully.

Sometimes a baby with hydrocephalus can't have permanent treatment straight away. If that happens, you'll be offered a temporary operation instead.

In some cases, surgeons may put in an access device. This is a small port placed under the skin, and the brain fluid can then be drained from it with a needle.

Another option that may be recommended is a subgaleal shunt. Here, the surgeons make a pocket under the skin, and the brain fluid drains into that pocket.

Most cases of hydrocephalus are treated with surgery to put in a ventriculoperitoneal shunt. The shunt lets fluid drain away from the brain. Usually it drains into the abdomen (tummy), but it can also drain into the chest cavity or the heart.

If you have triventricular hydrocephalus, you may be offered an endoscopic third ventriculostomy. In this operation the surgeon cuts a small hole in the skull and makes a new pathway for the brain fluid to circulate.

The medical team looking after you will explain the procedure and answer any questions you have.

After surgery, you or your child should be able to live a normal life without restrictions. Regular follow up appointments throughout your life are not normally necessary.

If there are signs of a problem with the shunt, a scan can help find out what is wrong.

Sometimes the shunt isn't sitting in the best position, and further surgery might be needed to reposition it. Your surgeon will talk this through with you.

Once the shunt has been put in, you may still need more treatment for hydrocephalus if the shunt stops working properly or becomes infected. If that happens, shunt repair surgery might be needed.

A blocked shunt can be very serious. Excess fluid can build up in the brain and cause brain damage, and this brings on the symptoms of hydrocephalus.

A shunt can also become infected after surgery. Infections are more likely to develop during the first month.

Phone your surgical team immediately if you or your child shows signs of an infection, such as:

• redness and tenderness along the line of the shunt or the wounds
• a high temperature
• headache
• vomiting
• neck stiffness
• tummy pain caused by the shunt draining into your tummy
• irritability or sleepiness in babies

If there is an infection, the shunt will have to be removed. Antibiotics are then used to treat the infection, and once it has cleared, a new shunt can be fitted.

Most children have their shunt fitted when they're very young, so they may need further surgeries throughout their life.

Bleeding can occasionally happen when a shunt is positioned, and this can cause neurological problems. There's also a small risk of fits after any type of brain surgery.

In younger children, particularly babies, cerebrospinal fluid (CSF) can run alongside the shunt rather than down it. The fluid may then leak through the skin wound. Additional stitches or further surgery will be needed to stop the leak.

An endoscopic third ventriculostomy (ETV) is surgery to make a small hole in the third ventricle, an area of fluid within the brain. The hole gives the cerebrospinal fluid (CSF) another pathway to circulate.

These complications can follow ETV surgery:

• the hole can close
• your brain may not be able to absorb the CSF that's now draining through it
• infection (though this is less likely than after shunt surgery)
• bleeding inside your brain
• neurological damage, such as problems with short term memory, double vision or hormone imbalances

If there's a problem with the hole, it may be possible to repeat the surgery, or you may need to have a shunt fitted.

Most nerve problems will get better, but there's a small risk of permanent problems. There's also a small risk of epilepsy. And there's a very small risk of an injury to a blood vessel in the brain, which may be fatal.