Bridget Janey shared her thoughts with us about how she plans to participate in #duradash2022.
About bridget
I’m 40 now, and was 39 when my spinal CSF leak started. My leak was spontaneous and caused by a bone spur on a bulging disc in my spine. After being in and out of emergency rooms for about two months, I was diagnosed with a spinal CSF leak. I also received my first blood patch from a local hospital at that time. When that patch failed, I was referred to Duke for a second blood patch. Even though I no longer suffer from headaches, follow up MRIs of my brain and thoracic spine in November showed that I still have a leak happening. I am being monitored by brain and thoracic spine MRIs every six months. A disc surgery may happen for me sometime in the future.
what are you doing for #duradash2022?
I plan to do low impact exercises; bike rides with my family, walking, elliptical, and step aerobics workouts.
My team name, “Bridget’s Flamboyance,” is in honor of my “flock” of family and friends that have supported me over the last year when my leak started. I am obsessed with flamingos! So when I suddenly became ill and was in and out of hospitals, my “flock” would send me flamingo themed gifts and cards to keep my spirits up ???
What do you want people to know about spinal CSF leak?
I want people to know how debilitating a spinal CSF leak can be. Quality of life for a person who is leaking can be non-existent. Spinal CSF leaks are very hard to diagnose; even when you do have a diagnosis, it’s a struggle to find the right medical professionals to help treat you.
What research on spinal CSF leak do you hope to see in future?
Just more awareness of what a spinal CSF leak can look like, and/or better diagnostics in the medical community as a whole would be amazing. I’ve come across a lot of medical professionals in the last year who find my case extremely interesting, but they have no idea how to help me, or won’t take me on as a patient at all.