Useful Links

Here are some links that I’ve found useful while navigating my Chiari and Intracranial Hypertension diagnoses.


NHS Conditions A-Z – I always start here when looking up a diagnosis I’m unfamiliar with; you can depend on the NHS to lay out the basics for you in unfussy, easy-to-grasp language.

The Brain & Spine Foundation and The Walton Centre – handy patient info leaflets that you can print off.

The Bobby Jones Chiari & Syringomyelia Foundation – special shout out to the impressive collection of video lectures from experts in the field, available via the website or straight from their dedicated YouTube channel. My favourite Chiari resource.

Conquer Chiari – really useful place to find info sheets, FAQs and links to research.

Conquer Chiari article re. connection to IH.

Intracranial Hypertension:

NHS Conditions A-Z – as with all the IH links, bear in mind that the treatments outlined might vary depending on whether the IH in question is being caused by something else, such as Chiari, or is idiopathic (something that occurs alone with no clear cause, referred to as IIH).

NI Government List of Conditions – clear info on the different kinds/causes of IH.

John Hopkins VP Shunt Info – reliable, concise info on what a shunt is and the surgery to fit (maybe install is a better word?) one.

Kids Health Parent Info on VP shunt.

Hydro Assoc Info on Shunts – useful for understanding the different types of shunts and their components, plus a list of indicators re. shunt malfunction.

GOSH Roald Dahl’s role in VP shunt creation – just adding this for fun cos it’s fascinating 😊.