Category: A story

Alongside early bulbs, these cheerful, robust little plants provide colour in the early months of the year and are frequently used as temporary bedding or in seasonal containers and window boxes.

Clusters of large, rounded flowers in a range of jewel-like colours, sometimes with contrasting centres and petal edges, nestle above mounds of soft leaves. A few have double flowers.

Hydrocephalus.

Many people with spina bifida or hydrocephalus learn to drive and continue driving for many years without any difficulty at all. But for some, the effect of the conditions on their ability to process information, remember and plan their actions can make driving a challenge.
Driving can look simple, but is a highly complex activity, involving, at the same time:
•Visual spatial skills (for example, judging distances and speed) and coordination
•Concentration
•Integrating information from several sources at once
•Planning ahead
•Decision making and navigation skills
Many of these factors can be challenging for people with hydrocephalus, or with Chiari II (associated with open spina bifida). Keeping up concentration can be especially challenging

Thank you once again for allowing me to share information on Hydrocephalus. You can find more about the condition through, www.shinecharity.org.uk/

You can read our story in my book, Marc’s Garden, published through Olympia Publishers. olympiapublishers.com/book/marcs-garden

Exercise is essential for everyone to keep fit and healthy.

It can raise our mood, keep our heart healthy and help with weight management.

For children especially, taking part in physical activities with other children, making friends and having fun is very important for the development of both their social and movement skills.

Children with spina bifida or hydrocephalus may need reminders about the rules of the games, and to take turns.

Children and adults with shunts may feel anxious about what exercise and sport are safe to participate in, so here is some guidance:

Shunts themselves are not fragile: they are made from silicon, which is strong and flexible. As they are usually positioned at the side of the head, they are difficult to break accidentally through a fall, as the shoulder would break the fall before the shunt hit the ground.

So there are few activities that are ‘off limits’ for people with shunts.

However, people with LP shunts should avoid any activity which involves twisting at the waist, as this can dislodge the shunt.

For a first trip abroad, or if your health means being within easy reach of certain healthcare facilities, there are some extra steps involved in planning travel. First pick the country you want to visit, then search the internet for the hospitals/healthcare services you might need in the region you’ll be travelling to. It will then be easier to pick a destination within a couple of hour’s travel, if you need to. 

For example if you need to be close to a neurosurgical centre, then you would search for ‘neurosurgery’ (adding paediatric if you need something for your child) in the destination region. 

In Europe, this is a good starting place for finding neurosurgery centres: https://www.eans.org/page/European_Neurosurgical_Centers 

Long cruises might be fine if your condition is stable, but can be difficult to get off if you become ill. For that reason, it may be difficult or very expensive to find suitable insurance for cruises. 
In developing countries or remote regions access to healthcare might be limited so you’ll need to do your research and plan carefully. 

It’s important to remember that healthcare abroad isn’t always free to use at the point of use, like the NHS is, and the availability and quality of the facilities may vary.

Speak to your travel insurers for advice as there may be restrictions on where you can access care. You may also want to contact hospitals/medical facilities in advance to check they would be able to meet your medical and access needs (including language). You could also find out what their charging policy and processes are. 

Flying in a regular commercial jet is fine for most people with shunts. If you were told years ago not to fly, it’s worth asking your neurosurgeon again as things have changed. Some people will have been told by their neurosurgeon not to fly, for specific reasons, so do check if this applies to you.

Flying in a small, unpressurised plane may not be wise for people with shunts.

https://www.shinecharity.org.uk/hydrocephalus/hydrocephalus

Read about our family living with Hydrocephalus in my book, Marc’s Garden, published by Olympia Publishers

Treatment Options for Hydrocephalus

Some forms of hydrocephalus do not require any specific intervention, as they may be temporary or resolve without the need for long-term management. However, in most cases, treatment is necessary and is typically surgical in nature.

Use of Shunts

The most widely used method for managing the increased pressure inside the head caused by hydrocephalus is the insertion of a shunt. A shunt diverts cerebrospinal fluid (CSF) from the brain’s ventricles, or other CSF-filled spaces, to another part of the body where it can be safely absorbed.

Shunts are slender tubes designed to drain excess CSF from areas where it is accumulating, redirecting the fluid to be reabsorbed elsewhere in the body.

Shunt Mechanism and Types

Nearly all ventricular shunts include a valve, typically positioned in the ‘neck’ section of the tubing. This valve opens when the pressure in the head reaches a specific threshold, allowing CSF to drain. The valves may be fixed pressure, adjustable pressure (programmable), or dual pressure (gravitational), depending on individual patient needs.

Shunt Materials and Infection Prevention

Shunts are constructed from silicon, a material that is strong, durable, and inert, with a very low rate of allergic reaction. Bactiseal shunts are available and can help to reduce the risk of infection following surgery.

https://www.shinecharity.org.uk/hydrocephalus/hydrocephalus

Marc’s Garden, published by Olympia Publishers

Conditions Associated with Hydrocephalus

There are several conditions that are either forms of hydrocephalus or are closely related to it. Some, such as longstanding overt ventriculomegaly in adults (LOVA), are classified as types of hydrocephalus, while others, like ventriculomegaly and external hydrocephalus, affect similar regions of the brain.

Longstanding Overt Ventriculomegaly in Adults (LOVA)

LOVA describes certain chronic forms of hydrocephalus that have been present since birth or early infancy. In these cases, symptoms may not appear for many years. Associated terms include arrested hydrocephalus, decompensating hydrocephalus and chronic congenital hydrocephalus.

It is believed that a congenital process, such as aqueduct stenosis (where there is a narrowing between the third and fourth ventricles), blocks the flow of cerebrospinal fluid (CSF) in the lateral and third ventricles. The ventricles subsequently enlarge, and because the skull bones are not fully fused in infancy, the head circumference can increase without leading to symptoms from raised pressure. Sometimes, the blockage in the aqueduct resolves, and CSF flow returns to normal, leaving the ventricles enlarged and the head circumference above typical size. This stable situation often persists into adulthood. Eventually, however, CSF can start to accumulate again, leading to symptoms of increased pressure—a process known as decompensation.

Symptoms may first emerge in early adulthood, but more commonly they start during middle or later life. The onset can be gradual, progressing over months, or, in some cases, develop quite quickly within days or weeks.

The most common signs and symptoms include:

• Gait ataxia: difficulty coordinating walking, often seen as a wide-based, staggering gait
• Cognitive decline
• Urinary problems: increased frequency, urgency, or incontinence
• Headache
• Nausea and vomiting
• Papilloedema

(Shine Charity)

To read about living with Hydrocephalus, please read my book, Marc’s Garden, published by Olympia Publishers.