Do you have an alert card? Something which identifies your condition in an emergency situation. I’ve been searching endlessly for one standard, something that will “speak” for me when or if I can’t. Trying to find something specific to ETV has been a fruitless exercise (Though this card can...
Articles with the Tag ETV
It’s a matter of trust…
There’s a certain level of trust I need before I (literally) let someone mess with my head. Some of the surgeons I’ve consulted with since diagnosis have definitely contributed to the realization of this. When I was diagnosed in 2007, I never knew the surgeon who operated on me...
Finding the words for what I feel in my head
At times, I get a slight throbbing feeling at the right bottom side of my head…I became aware of this a few months ago, though I thought nothing of it at first. Then, a few days ago, it nagged a little more than usual. I visualised this spot to...
ETV failure or not…time will tell
This will probably be the final post on the ETV Failure Guinea Pig topic from me (unless something significant happens and I live to tell the tale)…I have been patiently waiting to see the Neurosurgeon I consulted with last year to discuss the sleeping episodes I’ve been having. I...
Hydrocephalus take a number
Earlier this week, my Hydro symptoms reared its ugly head. I woke up at 4:30 am with a throbbing headache, mainly in my eyes…I was miserable and felt very lethargic. I made it through work that day and hoped it would ease up. Lasting all day with constant nausea...
Shunt vs ETV
When I was first diagnosed with Hydrocephalus, it was a whirlwind time filled with emotion. I can’t really say that I registered much until after my first operation, which was literally within a few days. It was a little surreal…to say the least. I had my shunt placed on...
I’m so sorry I disturbed you doctor. Of course you know better than me…
When I woke up on Saturday morning with a headache and slept all weekend I should have known it couldn’t be anything serious. Even when I couldn’t keep my eyes open at work on Monday, I should have just gone home, popped some Panadol and had a good sleep....
The first step to understanding is through knowledge
Understanding what Hydrocephalus is can be a little confusing, overwhelming or just plain and simply do your head in. I remember when I first saw the word on a scan result I had done. I remember going “Huh? Hydro what?” Since that day, now just over 8 years ago,...