The Message I'm Sharing With Others During Spinal CSF Leak Week

It’s Leak Week 2018

Leak Week 2018 is an opportunity for people like me, who have a spinal CSF leak, to highlight all that still needs to be done to help bring this condition to the forefront. I have been suffering from the debilitating consequences of a spontaneous spinal CSF leak for the past two years.

What Is a Spinal CSF Leak?

In a nutshell, your body needs cerebrospinal fluid (or CSF) to protect your spinal cord and your brain from injury. The CSF is a fluid that supports your brain and keeps it afloat. With a spinal CSF leak, the fluid seeps out of the spinal cord somewhere and makes your brain sag down so that it starts to get sucked through the opening at the base of your skull. Essentially giving you a kind of concussion whenever you are upright for a few minutes to a few hours. In my case, it took about 15 minutes for me to be in excruciating pain and have to lie back flat to alleviate symptoms. My life made a dramatic 180 degree turn and I am still dealing with this condition. You can read some of my previous posts here and here or read about how I cope here and here.

I was lucky enough to find a doctor for treatment after one year of searching. Unfortunately, that treatment only lasted a couple of months. A whole year later, I had another treatment, and I am just starting to get back on my feet again. I have a really long way to go. My body doesn’t know how to be upright yet and I still get horrible after-effect pain. Overall muscle mass has dropped dramatically turning almost all my muscles to fat and so I will have many months to recuperate and build myself back up.

My Message of Hope Through Video

I hope you enjoy this video I made of my journey with a spinal CSF leak and that you find ways to spread the word for me and others like me for Leak Week 2018.

How Can You Help Me Out?

I would love to see your participation on Wear Purple Day this Thursday, March 8th. All you have to do to help raise awareness for spinal CSF leak patients is: wear something purple, snap a pic of yourself, post it to Facebook with #leakweek #leakweek2018 #uprightheadache and send it to the Spinal CSF Leak Foundation Facebook page as well. You can go even further by posting on Instagram, Twitter and any other social media platform to really help us out for Leak Week 2018.

Thank you so much for all your love, support and encouragement as I muddle through this terrible condition. And thank you for watching my video.

You are my Something Wonderful each and every day!