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...
Hydrocephalus: When do you stop searching?
One clear challenge I’ve experienced personally, and seen others with Hydrocephalus struggle with, is finding a good Neurosurgeon/medical team. We encourage each other to not give up, to keep searching for that one doctor who will listen. It’s not uncommon to feel unheard or be disappointed by the medical...
Hydrocephalus: Know, Understand…Appreciate!
I have Hydrocephalus and have had brain surgery to treat it, 5 thus far. But.., this doesn’t mean anything in the grand scheme of the condition. Too many people across the world have had more brain surgeries because of it, which is also the number one reason for brain surgery in children (some...
Hydrocephalus: Invisible illness has a voice…
Hope. A word with so many different connotations, for different people, depending on their individual circumstances. Whether you’re the one diagnosed with Hydrocephalus or you know someone who is, it comes into play. And, since this is an incurable condition, your hope morphs as it ebbs and flows in...
Hydrocephalus: A pertinent question…
When you keep getting stuck with the wrong one… I’m starting to feel like the woman who attracts the wrong kind of man. The question I’m left with; “What am I doing wrong?” I go into my appointments and, quite honestly, the closer I get to them, the more...