CT myelogram & embolization for CSF leak experiences?

Hi, I’m Dana, 50. For years I’ve struggled with symptoms no one could explain—now a suspected CSF leak may finally provide some answers. I had a long career in software development and management for 25 years, but I lost my job because of my debilitating symptoms and the two-year search for answers.

I’m scheduled for a CT myelogram in May and possible embolization for a suspected venous fistula with Dr. Mondel at Jefferson. I’m really scared about what’s ahead and would love to hear from anyone who has gone through these procedures or is waiting for them.

I’ve had Chiari surgery, multiple lumbar punctures, and other surgeries that might be related. Based on my scans and BERN score, I’m considered high probability for a CSF leak, likely a venous fistula. I’m hopeful this may finally be the answer and that I can regain some quality of life.

I’d love to hear about your experiences:

CT myelogram: How was it during and afterward? Any unexpected issues or complications?

Embolization/fistula treatment: How was the procedure and recovery? Any complications or changes in symptoms?

Before, during, or after the procedures: Did you use any medications, treatments, or approaches that were helpful—or made things worse? Any tips or advice you think could help someone else?

While waiting for treatment: How do you manage all symptoms related to this?

Also, if anyone knows of other online or virtual support groups besides Facebook, I’d really appreciate any recommendations.

Thank you so much for sharing your experiences and advice. It means a lot to connect with others who understand this journey. I hope this is the answer I’ve been searching for and that I’m on the path I’m meant to be walking.

—Dana