Living With Hydrocephalus: An Independent Life Advanced Neurosurgery Associates October 6, 2021

Living With Hydrocephalus: An Independent Life

living with hydrocephalus

Living with hydrocephalus can present daily challenges, both before and after treatment. At Advanced Neurosurgery Associates, we are familiar with the adjustments for both those living with hydrocephalus and their families or caregivers.

We care about our making sure our patients have the most information as they navigate the complexities of living with hydrocephalus. Below we list some helpful tips, plus how to manage a normal life with hydrocephalus.

The good news is that with proper management and planning, hydrocephalus patients can enjoy all of their life milestones such as graduating, getting married, having children, and retiring.

Independent Living with Hydrocephalus: Is It Possible?

Hydrocephalus can develop at any age. In terms of outcomes, hydrocephalus during childhood presents significantly different challenges to adult-onset hydrocephalus. Some challenges arise from children’s growing bodies, as well as emotional, intellectual, and social difficulties. We discuss some approaches to raising a child with hydrocephalus.

Despite the differences, at ANA we have seen both infant and adult hydrocephalus patients go on to lead full lives:

  • The Hydrocephalus Association says that an estimated 40% of infants and 60% of children with hydrocephalus lead independent lives. Some children move away from home to live on their own, while others manage independence with sufficient assistance.
  • Patients with adult-onset hydrocephalus also have success with surgery and ongoing management. Prompt treatment can reverse many cognitive and physical symptoms. Other patients have success after rehabilitation, such as speech or physical therapy. It is not uncommon for patients to go on to live normal lives. Here are some success stories.

The quality of life for hydrocephalus patients depends on a number of factors, including:

  • the cause or reason for hydrocephalus
  • symptoms and whether it was treated early
  • the level of success of the treatment
  • whether other neurological disorders are present.

As such, the long-term effects of hydrocephalus vary greatly between patients as it is a complex condition.

Being Prepared for Emergencies

Whether you live independently or with family and friends, the key is being prepared for emergencies, such as a shunt or ETV failure. Dr. Arno Fried says that the most important factor about hydrocephalus treatment is that you have a lifelong connection with your doctor. “Hydrocephalus requires checking, it requires that if there is a problem, we need to be immediately accessible,” he says.

One of ANA’s patients, Amanda Breem, knows this well. She was diagnosed at 6 months old and underwent some 15 surgeries before the age of 16. “It was always difficult for me to walk through the hallways knowing that I felt like the only one with a shunt, or the only one that has a neurosurgeon that’s as close to me as my families members,” she says. Thankfully, after life-changing surgery with Dr. Fried, she never required surgery again. Now, she works on developing her career as an occupational therapist.

In addition to having a close medical network, it is useful to keep your medical records and medication information in an accessible and safe place. Some patients also give family or friends a second copy, plus set up a Medical ID in their cell phone so first responders or strangers can access your medical information without needing your passcode.

Regular headaches should be discussed with your neurosurgeon, especially if they develop while sleeping or upon waking up. Recording the time and activity before the onset of a headache can help your neurosurgeon.

Living with Hydrocephalus Post-Surgery

Hydrocephalus is commonly treated with surgery, whether a shunt implant or ETV. However, it doesn’t always remove all symptoms.

If you’re dealing with hydrocephalus as an adult, for example normal pressure hydrocephalus, walking issues are common. Surgery may correct a gait, although not always.

After surgery, you may need to build up your balance again. This can make mundane tasks like tying your shoes or picking something off the floor difficult. Until you build up your physical strength, it is normal to need to hold onto something or even sit down while doing these tasks. If you feel that your balance is still off, try squatting instead of bending.

Recovery after surgery takes around 4–6 weeks, although the actual timeframe varies from patient to patient. Rest is vital, especially during the first week to 10 days, and feeling the need to nap once or twice a day is normal.

When patients feel physically better after several weeks, they can start with light exercises, such as a short walk every other day. This helps with building your balance, as well as strength.

Driving with Hydrocephalus

Being able to drive offers significant freedom for those living with hydrocephalus. Driving with hydrocephalus is possible, although some patients have difficulties with depth and speed perception, timely reactions, affected vision and memory, or spatial and navigational issues.

Even a mild cognitive impairment could affect your safety when driving. A professional driving assessment can help confirm whether you are fit to drive. Here are some tips on where to find a driving evaluator to help you through this process.

Building Cognitive Skills

Hydrocephalus can affect short-term memory, as well as other cognitive functions. There are ways you can improve this. Having conversations with friends and family about current and personal events can help focus short-term memory. Playing board games can also help cognition, or doing crosswords or other games that require you to use your mind.

Everybody’s life with hydrocephalus is different, as are the challenges. Hydrocephalus survivor Amanda Breem said it was hard to engage and participate at school, and she required tutors and modified classroom activities to help her pass. “Growing it up was always hard for me to accept my diagnosis and to accept the fact that I felt different to my peers. Ultimately it contributed to a lot of feelings of depression and anxiety.” But with help and perseverance, she was able to graduate from Thomas Jefferson University in Philadelphia with a Bachelor’s and Master’s degree in occupational therapy.