Lindsay Chandler shared her thoughts with us about how she plans to participate in #duradash2022.
About Lindsay
I’m currently 32, and my spinal CSF leak started when I was 29. In May 2019, I got a headache that didn’t stop. It was more manageable in the morning, but by the time I got ready each day, I was in tears. Soon I started throwing up multiple times a day, losing my balance, and experiencing other symptoms. I went through a five-day hospitalization that didn’t help, and was misdiagnosed and mistreated for “migraines” for the next six months. Eventually, I was unable to work. My disability insurance even denied me due to my diagnosis, or lack thereof. Finally, a family member in the medical field fell into a conversation with a doctor and realized that I may have a spinal CSF leak. I found a specialist who diagnosed my leak, and also diagnosed my EDS. I received four blood patches over the course of seven months, which finally sealed me. Once I was properly diagnosed and sealed, I personally wrote an appeal to my disability insurance, and won the benefits they had previously denied.
what are you doing for #duradash2022?
I have to move to a new place during #duradash! Being able to pack up and take care of so much myself, I realize how much independence I have reclaimed. I also participate in an online support group for people with spinal CSF leak, so I plan to be active with information and support this week.
What do you want people to know about spinal CSF leak?
Spinal CSF leak, the surrounding diagnostics, and the treatments are all painful and scary. However, healing is possible. Advocating for yourself is so incredibly important.
What research on spinal CSF leak do you hope to see in future?
I hope to see more accurate, less invasive diagnostics developed.