Shunt malfunction what you need to know

Although shunts have saved hundreds of thousands of lives since first being used to treat hydrocephalus, life with a shunt can be complex and the fear that the shunts can malfunction is one that our members share with us often.

At Shine we’re often asked, ‘how long do shunts last?’, Well, there’s no simple answer. The material they are made from, silicone, is very flexible and hardwearing, and many of our members tell us they’ve had the same shunt for 30 years or more. Sometimes they are told by clinicians ‘You’re probably not even using it any longer!’ and while this may be true for some, unless the shunt has been carefully examined, it’s not a safe assumption to make.

Adult members have become very ill when the shunts they’ve had since infancy have suddenly malfunctioned, and the idea that the shunt is redundant could lead them to delay treatment. So, unless your shunt has been demonstrated to be no longer working, and you remain well, we would say ‘never say never’. Any sudden increase in head pain or new, unusual symptoms should be checked out. In hospitals, shunt malfunction should be ruled out in the beginning, rather than the end.

Many people do not show ‘classic’ signs of raised intracranial pressure, so, if you’re concerned it’s your shunt, don’t be afraid to speak out. You know your body, and your health. MRI can often reveal areas of the brain under increased pressure, but ventricle sizes may not change.

A shuntogram is a simple procedure in which dye is injected into the shunt, and a series of timed X Rays taken to see how far, fast and in which direction the dye moves through the shunt.

Finding out that the shunt is broken or disconnected during a routine check can raise a lot of anxiety.

Nowadays, most centres have stopped routine appointments for adults with hydrocephalus- if people think their shunt is malfunctioning, they (rightly) should not wait for the routine appointment to seek medical advice; also, people who become unwell in the days following a routine appointment sometimes delay seeking advice, as they feel the shunt is unlikely to be the cause of the symptoms.

The shunt may have been disconnected for several years, and if you are symptom-free the shunt will not usually be replaced. “Treat the person, not the scan” is the motto. However, after a lifetime of believing shunt malfunction is a life-threatening emergency, it can be very hard to adapt one’s thinking to accept you don’t need a shunt.

Anxiety can increase the severity of pain and amplify every headache. It can take a lot of reassurance to adjust to this new situation.

Implantable telemetric sensors are making it easier to detect raised intracranial pressure, whether the shunt is working, and even which end is blocked, without the need for invasive Intracranial Pressure (ICP) monitoring. They are currently used in adults, owing to their size, but shunt manufacturers are constantly innovating; hopefully such invasive tests will become a thing of the past for all.

During Hydrocephalus Awareness Week we featured many of our membersʼ stories about living with Hydrocephalus including James who outlined his life in numbers, pros and cons.

Here is his story in detail if you missed it during our awareness week.

James is 25 years old and has had around 25 brain operations since being born.

“My first shunt fitted at 3 months old, first revision at 8 years old, (Then every 2 years after that more or less). In this time, I’ve had 2 brain hemorrhages, many infections and blockages. However, this hasn’t held me back, I completed my GCSEs and A levels and have 3 degrees with over 100 professional articles published.”

I have published over 200 articles for numerous publications and been featured in The Times, Guardian, JURIST Legal News and Commentary, and The Law Society Gazette; where I have written on many subjects linked to my disabilities and having Hydrocephalus. I have also assisted with setting up an association to help access the legal profession when you have disabilities, as well as working with The Law Society. My articles include writing on access to the legal profession, disability and the bar, international law, and international relations as well as breaking news stories on things such as Brexit, Russia’s war in Ukraine, Afghanistan, and UK politics, as well as on atrocity crimes.

I work in International Humanitarian law and Academics, with a special focus on atrocity prevention,and with Parliament on genocide prevention and atrocities against the Hazara in Afghanistan. The Hazara are an ethno-religious group, who are persecuted for who they are and their beliefs, and I work with the UK Parliament and the House of Lords who meet to discuss many issues. The group I run looks at the atrocities committed by the Taliban against the Hazara and how to prevent them and protect the Hazara community in Afghanistan and across the world.”

Pros and Cons to having Hydrocephalus and the myriad of conditions which come with it.

“The Pros are that even with all I’ve been through I still have a sense of humour, patience with myself and others and a steely determination to fight for the rights of others, especially when they

However, some of the cons which nobody discusses are that along the way I have acquired memory loss, high functioning Autism, many physical scars, partial sight loss, Nystagmus, Diplopia. My ʽnewest superpower’ is seizures. These began in 2020 a few weeks before lock down, they arrived from nowhere and have become part of me, scary to begin with and now just part of who I am.

What would you like to tell our other members?

“Growing up with this special set of differences was tricky, others weren’t always kind, the challenge is to surround yourself with those who love you and only want the best for you and you will grow into who you are destined to be. However, for me it is still about going at my own pace, and not judging yourself against others. I see my difficulties as being my superpower. Having Hydrocephalus, as well as Nystagmus, and Diplopia, memory issues and Autism, can be difficult; and there is no rule book on life. My difficulties make me who I am, but they don’t define me.”

James is keen to with work with Shine especially around more awareness with employers about NonVisible Disabilities, as well as awareness and ways to accommodate those with Hydrocephalus, as it doesn’t come as a sole condition and often the disabled community can feel dislocated and shut out from life.

If you would like to contact James about his work, his writing or involvement in Shine please email him at james.joseph98@hotmail.com