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...
Articles with the Tag ETV Failure
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...
Time…How a day can seem like an eternity
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...
When your body requires you to rest…
I’m not the kind of person who likes being told what to do. In fact, the more independent and self-sufficient I am, the better. My family know, despite their protests or advice when it comes to the way something needs to be done, I’ll still do what and how...
Migraines…evil twin or camouflage for Hydrocephalus?
Do you ever find yourself caught between not knowing if the pain in your head is just a headache, a migraine or the horrible beast, which is Hydrocephalus? I think it’s fairly easy to distinguish between just a normal headache and something more severe. There’s almost a point of escalation...
Hydrocephalus: I reckon having someone in your corner is better than the alternative.
If you’ve been following my blog, you’ll know the challenges I’ve faced/am facing, just to be heard. Being told at my last consult, which always feels like it’s the last, “We’re just not going to operate on you because, you look fine and your tests show that too“. Going...