Anyone who has followed my blog and knows my journey, would have an understanding of where I’m at. But, in the interest of those who aren’t aware, I’ll try to explain. After last week’s vision loss and subsequent headaches, I’ve had time to think (aka, silently freak out!). My...
Hydrocephalus
Hydrocephalus: Vision loss is scary and Migraines suck!
My central vision blacked out on Christmas Eve, while working, sending me into a bit of a panic. People’s faces were reduced to half an image and text was darn near impossible to read! I smiled at the receptionist on my way out of the office, whilst freaking out...
Hydrocephalus: Isn’t it ironic?
My husband fears me having more brain surgery and would rather pretend all is well with me. When it comes to Hydrocephalus, I fear so many things too, including sharing his fears. I understand what drives it. However, I don’t have the luxury of pretending all is well, especially...
Hydrocephalus: Life interrupted…
Today, the 2nd of December, marks 11 years since my emergency ETV was performed (the previous 2 day’s surgeries, were unsuccessful). 3 surgeries over 3 days, while 5 and a half months pregnant… Day 1 – VP shunt revision of a Medtronic Programmable Day 2 – VP shunt replacement...
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: Rooting for Roona
Something that many with Hydrocephalus cannot believe, and rightly so is, how few people know about it. Some have never heard of it and, even in the medical profession, this is the case. I have found myself in many situations where I’ve had to simplify an explanation for someone...
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: When you realise you simply can’t “fix” it!
Disclaimer: This is not a post to influence anyone else, nor should it be used as medical advice or guidance. I have an inherent nature to try and fix things. It doesn’t matter what it is; my situation, someone else’s problems or just the world in general (I know,...
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...