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Skyewaters

Hydrocephalus And Brain Injury — Advancing Awareness And Patient Advocacy.

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Skyewaters
Skyewaters
Hydrocephalus And Brain Injury — Advancing Awareness And Patient Advocacy.
  • Hydrocephalus: The heavy burden of being the main breadwinner despite living with an incurable condition…
    Hydrocephalus

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

    BySkyewaters November 13, 2020November 13, 2020

    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…

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

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

    BySkyewaters November 3, 2020November 3, 2020

    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…

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  • Hydrocephalus: Rooting for Roona
    Hydrocephalus

    Hydrocephalus: Rooting for Roona

    BySkyewaters October 24, 2020October 24, 2020

    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…

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

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

    BySkyewaters October 21, 2020October 21, 2020

    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…

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  • Hydrocephalus: When you realise you simply can’t “fix” it!
    Hydrocephalus

    Hydrocephalus: When you realise you simply can’t “fix” it!

    BySkyewaters October 18, 2020October 18, 2020

    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…

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

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

    BySkyewaters October 10, 2020October 10, 2020

    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…

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  • Hydrocephalus: When do you stop searching?
    Hydrocephalus

    Hydrocephalus: When do you stop searching?

    BySkyewaters October 7, 2020October 7, 2020

    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)…

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  • Hydrocephalus: Know, Understand…Appreciate!
    Hydrocephalus

    Hydrocephalus: Know, Understand…Appreciate!

    BySkyewaters September 30, 2020September 30, 2020

    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…

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  • Hydrocephalus: Invisible illness has a voice…
    Hydrocephalus

    Hydrocephalus: Invisible illness has a voice…

    BySkyewaters August 31, 2020August 31, 2020

    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…

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  • Hydrocephalus: A hard way to learn what drugs to avoid!
    Hydrocephalus

    Hydrocephalus: A hard way to learn what drugs to avoid!

    BySkyewaters August 16, 2020August 16, 2020

    Disclaimer: I’m writing this post in hindsight, which is a wonderful gift and at the tail end of practically poisoning myself, unknowingly. So, apologies in advance where needed…(Also, it’s not so much Hydro-related but no doubt a piece of my Hydro puzzle). NB. This drug might work for some individuals and this post is in…

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