When I said before that there’s never a dull moment with this condition, I should have added that “There’s always something new to learn about, that you haven’t heard of before”.
My family and I have recently moved to Brisbane, Australia. A new job, family and the hope of “better” healthcare are just a few of the reasons why we’re here. What I didn’t plan on, was connecting with my fellow Hydro Brothers, Sisters and even their family. Meeting Joshua Gourlay (photo insert), his mother Nicky and Grandmother, has been quite insightful and heartwarming…A place I can call “home” and a much needed connection. The day I met Josh, a few weeks ago, he looked at me with a big smile on his face and said, “How are you?“.
He was the one laying in a hospital bed, having just had brain surgery…Josh (only 7 years younger than me), has had close to 100 surgeries! He is a fighter and survivor in his own right…a true Warrior. I would probably have lost count by now. Who can keep track of that!? This is the reality of Josh’s life along with seizures and some other challenges. Yet, he seems to face it with a wicked sense of humour (a good quality to have with a condition like this) and a definite love for life. He loves his dogs Bella and Ruby, watching Outback Truckers and of course a spoiling of Maltesers and McDonald’s!
Where I have an ETV, after VP shunt removal, Josh is unable to have this choice of treatment. He has a more complicated case of Hydrocephalus, one not conducive to an ETV. (I wish it could be as “simple” as this for him). However, his surgeon may opt for this as a backup plan, should his new treatment option fail.
At this point in time, Josh is undergoing surgery, a procedure called Ventriculo-ureteral shunt insertion using percutaneous nephrostomy, just a short time after his last surgery. That sounds even worse than having to pronounce or wrap your head around the word Hydrocephalus! Nonetheless, there are pros and cons with this operation (as there is with most) and all I can say is, I sincerely hope and pray with all my heart that Josh gets the relief he needs from all this Hydro drama!
If I have to be honest, I still can’t fully grasp the procedure and what exactly happens during the operation. This video was informative to a point but other than that, I can’t really find much on the actual procedure and how they would connect the shunt. What I have learnt though, while trying to do some research, floored me a bit. Like learning that a shunt can be placed in the Gallbladder and Fallopian tubes as well. (It would appear this is not a surgeons first choice but only done in extreme/complicated cases where they don’t have any other option).
I’ve always only known about the more common shunt surgeries, which include:
CSF Inflow Location
CSF Drainage Location
Right atrium of the heart
*Referenced from https://www.hydroassoc.org/shunt-systems
Most people with shunts for example, have never heard of an ETV either. I suppose it’s probably due to a number of factors, like whether or not you’re a good candidate for it, the experience of the surgeon, their preference and/or your medical history.
Like I said at the beginning of this post, there’s always something new you haven’t heard of before. If you’ve heard of or better yet, had this surgery yourself or know someone who has, what’s your experience been like?
*Update: Unfortunately, the operation did not go according to plan due to too much scar tissue. Further options are being explored…