Thanks for cheering me on!
I'm so excited to participate in this year's #duradash, a virtual event supporting the Spinal CSF Leak Foundation, May 26 through June 8, 2024!
As you know, I have a personal connection to spinal CSF leak, and I am passionate about Spinal CSF Leak Foundation's mission to help reduce the suffering of all those affected by intracranial hypotension and spinal CSF leak. With #duradash, I am hoping to raise awareness about spinal CSF leak by participating in activity appropriate for my current health state—and raise funds crucial for more research and education about CSF leak!
I’m a 28 years old girl from Norway. 21. November 2022 I gave birth to my daughter. During the epidural placement a dura-puncture occurred and I got a CSF-leak. I had never heard of this complication before and the headpain was worse than the contraction. 2 days after I got my first blood-patch. It worked for maybe 12 hours before the symptoms came back. I was told the symptoms would go away within 3 weeks. The symptoms did not go away, and 2 months later I got my second blood patch. This patch gave me some relief for a few weeks. In a period of 9 months I was almost bedridden with my little baby. After my second patch I was told my problems probably was something else than a leak. I was hospitalised and picked up by ambulance a lot of times, but the MRI was clear and did not show a leak. Therefore I was dismissed.
I started to be desperate because I knew I still had a leak because I was only able to stand upright 2 hours during the day. I did a lot of research and finally found a neurosurgeon, Dr. Ulrich in Bern who took my case. He did an exploratory surgery in the area the epidural was placed. He found the leak (it was an arachnoid bleb), sewed and patched it. I was so happy that he took my case and that I trusted my instincts about something being completely wrong with me.
The recovery was long and hard, but now - 9 months later I’m starting to have my life back.
I have documented my whole journey from the start to the end on my instagram: mamma_paa_vent if you want to contact me.
Thanks so much for considering donating to my campaign, and check back here for updates on my #duradash progress!
