Part 1 of 2 That’s rhetorical! However, my question is sincere and this is why… Having hydrocephalus and enduring brain surgery (repeatedly) takes a toll on you. We never really know what the effects will be. Symptoms, surgery and recovery, may differ with each operation, per person. For those...
Ever feel like you’re caught in brain paralysis..?
(Not sure if that’s even a thing but, it is for me) I’ve always been able-bodied. So, my comparison will be based on what I “assume” it’s like to lose function. I can’t really explain it but, my brain feels stuck. I wasn’t born with hydrocephalus so, knowing what...
Don’t go out without a fight..!
Some days it feels like I’m literally floating through life, day by day. Caught in a never ending loop, facing the challenges this condition imposes. I want and need a break… Faced with the reality that the treatment options, keeping me alive, are not ideal. They fail. They need...
Shunt infection is the last thing anyone wants or needs!
There’s so much you need to remember and be aware of and yet, it’s quite simple. Contradictory, I know! There are a few things we need to be aware of but, there are so many times you doubt yourself. The questions never end and nor does the second-guessing… I’ve...
Living with a VP Shunt is not new to me but, this time, it’s different.
For a start, I can hear my shunt draining CSF when I change positions or tilt my head a certain way. This is something I did not experience with my Medtronic programmable shunt. There are even times where I can hear the little ball inside the valve, rolling around...
Know your headache triggers and when to react
Stress induced headaches are bad enough to mimic hydrocephalus headaches. The last 3 days and nights, I’ve had this kind of pain. Unfortunately, I haven’t been able to take any pain relief strong enough to alleviate the discomfort. So, I grin and bear. Thankfully today, my 45th birthday, the...
Hydrocephalus…It’s complicated.
You know when someone, on your friends list, updates their relationship status online to, “it’s complicated”? Generally, most people frown, but understand, and accept this for what it is. No explanation or definition, of what it means, required. The same can he said for this condition. At it’s very...
You can help me face the unknown. This is how!
When supporting someone with an incurable condition, there’s a level of trust that comes with great responsibility. It requires vigilance, and an awareness, as if you were protecting your own life…Without this, they might as well be fighting their battle in isolation… While recovering from surgery, I had a...
The most important daily reminder to myself; “You’ve just had brain surgery! Take it easy on yourself”
I repeat this as soon as I catch myself being too hard on the one person who doesn’t need it: ME Brain surgery does not leave you unscathed…the after effects are real and, under the right circumstances, can have a negative effect! It’s what you do after the fact...
An Inside Look At VP Shunt Surgery. The Courage Within!
It’s been 3 weeks since I had a VP Shunt placed. There are spots on my skull where it feels like my head has been placed in a vice grip, (stealth machine, to be exact, according to one of the nurses when I asked why I have a covering...