Samantha shared her thoughts with us about how and why she’s participating in #duradash, and what she wants people to understand about spinal CSF leak. You can support her #duradash campaign here!
About Samantha
I am currently 29 years old. I was 27 when I started leaking and I was newly postpartum with a newborn and a two year old. Unfortunately, the hospital where I delivered dismissed my leak symptoms and sent me home. I had no idea what was going on other then the fact that I was having debilitating head pain that by three weeks postpartum had me completely bedridden. I was only able to be upright for 10-15 minutes at a time.
I had multiple failed blood patches and my leak did not show up on imaging so doctors were giving up on me left and right. It was terrifying! I never once thought I would end up in the hospital fighting for my life, at a young age, hearing the words, “I’m not sure what else we can do for you.” I had a pain specialist tell me to stop searching for answers and that I needed to give up on the idea that I was leaking. Mind you, I was completely healthy before my spinal anesthesia, and all my symptoms started 24 hours after my spinal block!
Thankfully, I was able to get to a specialist center a few months later was sealed with a blood and fibrin glue patch. They saved my life that day! I went into rebound intracranial hypertension six hours after my patch and I’m still dealing with it, but I would do this over leaking any day! I now live life with a whole new perspective. Everyday upright is truly such a blessing!
What are you doing for #duradash2023?
I am finally able to work out again, so I will be at the gym every day during #duradash!
What to you want people to know about spinal CSF leak?
Two things: 1) Even if blood patches fail and your leak does not show on imaging, you can still have a spinal CSF leak; and 2) I am a nurse, and a spinal CSF leak is by far one of the most debilitating illnesses I’ve ever seen or experienced.
What research on spinal CSF leak do you hope to see in future?
Better ways to detect and treat a spinal CSF leak and what puts you at risk for a spinal CSF leak.
