Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

Hydrocephalus: The heavy burden of being the main breadwinner despite living with an incurable condition…

A condition like Hydrocephalus casts some of its own burdensome moments on the person diagnosed with it, amongst other things. It’s unpredictable nature, leaves nothing to be desired. The burden wears heavy and so too does the responsibility of it all, like: Having to support your entire family –...

Hydrocephalus: When other medical professionals have a sense of urgency about your symptoms.

To say I have been well and truly prodded and poked would be about right! Sunday – MRI, Monday – Endoscopic ultrasound, Endoscopy and Colonoscopy (ugh!), and Tuesday – Thyroid nodule biopsy.  The anaesthetist yesterday asked me about my medical history, very interested in my Hyperthyroidism and Hydrocephalus. Her questions were...

Hydrocephalus: Have you ever considered the potential risk of radiation (i.e. Cancer) over time? What would your risk appetite be?

Stupid question (partially)…I know!  “Like other X-ray imaging exams, CT scans expose you briefly to a small, targeted amount of ionizing radiation. The radiation helps create an image of structures inside your body. At the low doses of radiation, a CT scan uses, your risk of developing cancer from...

Hydrocephalus: Being sent from a Neurosurgeon (NS) to a Neurologist.

A Neurologist focuses mainly on treating you with medication to control your symptoms. A NS is like a plumber, they fix the leaky/broken pipe (shunt) or reopen the blocked/partially blocked hole (ETV). Understanding the condition you have, is the first step to knowing what you need. For some, their...