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 with an Orbis Sigma Day 3…
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 – 5 in mine (thankfully my husband…
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 priceless and struck a chord, an…
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 else, because they simply don’t know…
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 it is so small that 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, overly ambitious!). I’ve had a while…
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 faith, trust and belief in their…
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 care you receive, or (more commonly)…
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 only a few hours or days…
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 an infinite loop! These are just…
