Hydrocephalus occurs when excess cerebrospinal fluid (CSF) builds up in the brain. Too much CSF causes the ventricles of the brain to expand, increasing pressure and causing damage.
Hydrocephalus can be congenital or acquired. Congenital hydrocephalus happens in the womb from conditions such as spina bifida (when the spine doesn’t properly form) or a brain malformation such as Aqueductal Stenosis, Arachnoid cysts, Porencephaly, and Dandy-Walker syndrome.
Acquired hydrocephalus can occur at any age. It can be caused by stroke, brain tumour, meningitis, intracranial bleeding, head injury, and other unknown (idiopathic) causes. While there are treatments available to help manage hydrocephalus, there is no permanent cure. This page is specifically for individuals with acquired hydrocephalus.
Symptoms
Symptoms of acquired hydrocephalus include:
- Chronic headaches* that may not be relieved by pain medication
- Cognitive challenges or changes in cognitive performance
- Decline in academic or work performance
- Difficulty waking up from sleep
- Incontinence
- Irritability/ personality changes
- Loss of consciousness, fainting
- Loss of coordination, motor performance, or balance problems, including gait disturbances: clumsiness, difficulty walking on uneven surfaces and stairs
- Seizures
- Tiredness or difficulty staying awake
- Visual problems; blurred or double vision
- Vomiting/nausea (especially projectile in children)
In diagnosing Normal Pressure Hydrocephalus, doctors look for a telltale triad of symptoms occurring together along with increases in the size of the ventricles in the brain: mild cognitive impairment, gait disturbances, and urinary incontinence.
*Headaches experienced by children and adults are often at the front of the head on both sides. They are generally severe upon waking or following a nap and may be relieved by sitting up.
Diagnosis and treatment of hydrocephalus
Hydrocephalus is most often diagnosed through computed tomography (CT) or magnetic resonance imaging (MRI) scans, neurological examinations, lumbar punctures, and other tests. Once a diagnosis of hydrocephalus has been made, there are two options for treatment. When hydrocephalus needs to be treated, the person will either have surgery to create a small hole in the third ventricle in the brain to restore CSF flow (endoscopic third ventricle (ETV) surgery) or a surgery to implant a shunt in the ventricle that is experiencing the excessive CSF. These treatments help divert the excess CSF away from the brain. There are several different types of shunts available, and the neuro team will make recommendations based on your specific condition.
Since implanting the shunt is brain surgery, a neurosurgeon will be performing the procedure and be a part of creating the after-surgery care plan. It will involve a period of close-monitoring and a lot of rest mixed with appropriate activity. Maintaining and managing hydrocephalus and shunts will be a long-time process: doctors will be on the lookout for infections and malfunctioning shunts.
Effects of hydrocephalus
Hydrocephalus in adults can be caused by a brain injury and it can cause some of the same effects as brain injury. The shunt placement can also lead to some effects such as headaches or nausea.
Not everyone will experience the same effects, but they can include:
- Attention and memory deficits
- Auditory changes
- Confusion
- Constipation
- Fine motor skill challenges
- Muscle weakness and spasticity to mild imbalance
- Seizures
- Sensitivity to external pressures (for example weather)
- Vision changes
These can be challenging to cope with, but with friends, family, and support services, you can learn to manage changes in your abilities.
- More information on behavioural effects of brain injury
- More information on cognitive effects of brain injury
- More information on brain injury and physical effects/mobility
Rehabilitation after hydrocephalus
Along with ongoing medical checkups to make sure treatment is progressing safely, you will most likely need to undergo rehabilitation for any physical, mental, or cognitive changes to your abilities.
Work with a neuropsychologist
A neuropsychologist can tell you how the brain controls abilities, and what effect hydrocephalus and brain injury can have on you. They will predict your progress over the short and long-term. This will be an ongoing process as conditions change.
Work with additional rehabilitation specialists
Occupational therapists, physical therapists, and cognitive behavioural therapists are all specialists that can help with independent living, adapting abilities, and learning.
Hydrocephalus in seniors
Hydrocephalus can develop in older adults and is called adult-onset hydrocephalus. The causes of hydrocephalus at this age are like causes for all ages (stroke, head injury, intracranial bleeding, meningitis, etc.) While many instances of hydrocephalus come with high intracranial pressure, adults over the age of 60 may develop a form called normal pressure hydrocephalus.
Normal pressure hydrocephalus (NPH)
Normal pressure hydrocephalus (NPH) occurs when the ventricles in the brain become enlarged with CSF, but there is no increase in intracranial pressure. Because of this, it’s often mistakenly diagnosed as early dementia, Parkinson’s or Alzheimer’s because it shares the same effects. The diagnosis is confirmed with computed tomography (CT) or magnetic resonance imaging (MRI) scans and treated the same way as any other form of hydrocephalus – by waiting and watching, surgically implanting a shunt or performing an ETV.
Resources and research
Disclaimer: There is no shortage of web-based online medical diagnostic tools, self-help or support groups, or sites that make unsubstantiated claims around diagnosis, treatment and recovery. Please note these sources may not be evidence-based, regulated or moderated properly and it is encouraged for individuals to seek advice and recommendations regarding diagnosis, treatment, and symptom management from a regulated healthcare professional such as a physician or nurse practitioner. Individuals should be cautioned about sites that make any of the following statements or claims that:
- The product or service promises a quick fix
- Sound too good to be true
- Are dramatic or sweeping and are not supported by reputable medical and scientific organizations.
- Use of terminology such as “research is currently underway” or “preliminary research results” which indicate there is no current research.
- The results or recommendations of a product or treatment are based on a single or small number of case studies and has not been peer-reviewed by external experts
- Use of testimonials from celebrities or previous clients/patients that are anecdotal and not evidence-based
Always proceed with caution and with the advice of your medical team.
Information for this page provided by Hydrocephalus Canada’s (formerly Spina Bifida & Hydrocephalus Association of Ontario) A Guide to Hydrocephalus.
