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 and uttered the words “But you…
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 nature of the disease. Doctors aren’t…
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 resting inside one of the ventricles,…
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 going on the rollercoaster ride once…
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 procedure I’ll be having is called…
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 only took 5 years) who will…
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 cap on because a situation like…
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 find out if someone from Neurology…
Four days ago I was “fine” and now, each day closer to the next feels like an eternity as I will time to pass quicker. Time, something which feels like a luxury, a priceless possession I wish I had more control of, with a dash of patience. I’m at a crossroad (again), one no doubt…
It’s not enough that you or your loved one has been diagnosed with this condition, at least that’s the way I see it, from “life’s” point of view. (“Life” being whatever it is that controls all the “bad” that people endure). It’s not necessarily a death sentence but it very well could be (others have…
