Duradash® 2024 Spotlight: Amalie

May 30, 2024duradash®, News

Print Friendly, PDF & Email
Amalie 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!
 
Amalie duradash spotlight
 
 
 

About Amelie

 I’m a 28-year-old woman from Norway. On November 21, 2022, I gave birth to my daughter. During the epidural placement, a dural puncture occurred, resulting in a spinal CSF leak. Prior to this, I had never heard of such a complication, and the resulting head pain was more intense than the contractions I experienced during labor. Two days later, I received my first blood patch, which initially provided relief for about 12 hours before the symptoms returned. Despite being assured that the symptoms would subside within three weeks, they persisted. Two months later, I underwent a second blood patch, which offered temporary relief for a few weeks. Over the course of nine months, I was nearly bedridden while caring for my infant.

After the second patch, I was informed that my issues might be unrelated to a leak. Despite numerous hospitalizations, my symptoms persisted, leaving me feeling desperate as I could only stand upright for two hours a day. It was incredibly painful to hear from countless doctors that nothing was wrong with me.

 

Through extensive research, I eventually found a specialist who took on my case. He performed an exploratory surgery in the area of the epidural placement and identified the leak as an arachnoid bleb. After the leak was repaired, I felt a sense of relief and gratitude for trusting my instincts.

The road to recovery has been lengthy and challenging, but now nine months after surgery, I am beginning to reclaim my life. I have learned to appreciate the small things in life.

 
 
 

What are you doing for #duradash2024?

I plan to walk outside 30 minutes every day.
 
 
 
 
 
 

What to you want people to know about spinal CSF leak?

I want people to know that a spinal CSF leak is so much more than just a “headache.” I had a lot of neurological symptoms, and the leak affected every aspect of my life. I was not able to take care of myself. I also want people to trust their instincts and keep fighting for help. 

 

 
 
 
 

What research on spinal CSF leak do you hope to see in future?

I hope to see more research on the chronic post dural puncture headaches that often do not show on MRI.