This post is for all those living with and, supporting someone, diagnosed with Hydrocephalus. First off, I would like to acknowledge: The fact that you’re in this alongside your Hydro warrior is admirable. Not everyone is made to withstand the challenges life throws our way especially an Invisible illness...
Hydrocephalus
Hydrocephalus: ICP Monitoring results leave me feeling “conflicted”
I’ve waited more than two weeks to hear about my ICP Monitoring results and eventually assumed that “No news, is good news”. And, as it turns out it is indeed the case. I should be relieved and happy, to say the least. But…I have mixed emotions… I requested a...
Hydrocephalus: When you hear but don’t listen…
2 weeks ago, I had ICP Monitoring done (only my 5th Hydrocephalus-related surgery since being diagnosed just over 11 years ago). There were 2 things of note, amongst others, I took away from that experience: A nurse who looked at me surprisedly when I told her I have Hydrocephalus...
Hydrocephalus: What’s the reason why doctors “refuse” to help patients?
I remember a time when things were so simple, medically speaking. You felt unwell, went to the doctor and they actually helped you. Illnesses like Cancer, which everyone knows has a slim chance of survival, depending on the stage it’s at (but it’s possible), were/are accepted for the fatal...
Hydrocephalus: The pressure test
ICP (Intracranial Pressure) Monitoring, something I’ve heard about before, seen other Hydro warriors go through but, hadn’t experienced for myself until last week. I went through the normal motions and feelings before surgery. Knowing that a piece of fibre optic transducer sensor would be going through my brain and...
Hydrocephalus: What is the right frame of mind?
This question pertains just as much to someone who has recently been diagnosed with Hydrocephalus as it does to someone facing brain surgery, which is never easy. For me personally, it doesn’t matter that people say one procedure is “not as bad” as the next, it doesn’t stop me...
Hydrocephalus: When the thought of brain surgery “excites” you
You’re probably wondering if I’ve completely lost my mind or how I can say that, well that’s because it’s only one of the emotions I feel right now – along with fear and anxiety. It may not be an ETV or Shunt surgery but it’s brain surgery nonetheless. The...
Sometimes all you need is 1 person
Having Hydrocephalus has certainly taught me some valuable life lessons. Some…more obvious than others. The last few weeks have felt like an unnervingly familiar road which I walked a few years back. History repeating itself, with doctors who outright refuse to help me BUT there’s 1 (FINALLY! – it...
Do you have a backup plan?
My experiences over the last while have certainly not been unique to me (Confirmed by the comments and messages I’ve received). This past week, I have had various reactions consisting of outbursts and crying when I’m alone because of sheer helplessness and more. I regrouped and put my thinking...
The “protocol” ED is missing when it comes to Hydrocephalus
Just an update, since my last post, with me ending up at the ED, despite my internal protests and reservations that nothing would be done…(I always give a situation the benefit of the doubt). But alas… There were a few things that stood out for me this weekend: Calling to...