I finally had my series of MRI scans last week. I will share it here with you So…it appears that everything is still the same…with the exception of one thing. The NSs plan of action is to “maybe do a lumbar puncture but” he “remains reluctant to operate“. Here’s the context though and where I…
There are so many things going through my mind, all at once…I feel anxious, scared and yet prepared for the worst. I’m in combat mode in case I get an answer to my prayer that “something is wrong“. Yes, my prayer…It’s the one thing I’ve been praying for ever since the surgeon told me he…
As if having Hydrocephalus is not stressful enough, due to its unpredictable nature and challenges, there’s something else associated with it that can literally give you a headache…the financial burden that goes along with it. The diagnostic tests that need to be done to ascertain if there is a problem, cost an arm and a leg….
I used to think that there must be better health care in the world, especially in places overseas (which could literally be anywhere depending on where you live). In fact, I moved countries specifically because people professed this view and seemed convinced beyond a doubt that better medical care existed outside the borders of my…
Have you ever been told that you don’t have Hydrocephalus after another doctor told you that you do, only to get told by the next one that you, in fact, do have it? Or, that your headaches are caused by an overuse of analgesics? Or, that it’s caused by stress or life changes you might…
Monday, I had an appointment with Dr H whom I had seen before, a few years back (In my book Hydrocephalus: Floating Faithfully, I started using letters of the alphabet instead of real names for doctors whom I’ve consulted with since diagnosis. I hope I don’t end up at Z). I opted to consult with him because of…
***I wrote this post and intended to publish it before my last one. But, I never got around to it because of what happened.*** I’ve been trying to go days, weeks even where I just forget I have Hydrocephalus. I thought I was doing well but there’s a little card in my phone pouch that reminds…
There’s something that gets me each time…the realization that my world is filled with “Could it be..?” or “What if it’s..?” When I got my diagnosis of Hydrocephalus and subsequent shunt placement, these questions were probably the most commonly asked. If I felt anything out of the ordinary, the first thing I suspected was my…
Any parent of a child with Hydrocephalus knows that the condition renders certain challenges and difficulties (Saying that feels like an understatement). It’s a journey of discovery with many unknowns and scary pathways. No one person with Hydrocephalus is the same as the next, despite having the same condition. We are different but we can relate…
Being an adult, diagnosed at the age of 29 with Hydrocephalus, I don’t know what it’s like to receive medical care for this condition from birth. However, when I read about other’s who have been on the other side of my spectrum, it makes me wonder if there’s a possible disconnect in the care we…
