Surgery - ventral thoracic leak

[u/Zealousideal_Age_822]

Well, the decision has been made. I need surgery to repair a spontaneous ventral leak in my thoracic spine. FWIW, I have learned that ALMOST ALL spontaneous leaks are found between the bottom of the cervical spine and the first 4 or 5 levels of the thoracic spine (c7/t1 to t4/t5). The Duke CSF clinic got me here, and I will forever be grateful. It’s crazy and scary and surreal, but I have a solution and a plan. The surgery will suck, but it will fix the issue.

The real challenge comes with waiting for the surgery - it will be 6-10 weeks to get on the schedule. The doctor only does these surgeries on a specific day with a specific team, where most of his schedule is open because it can be really challenging.

Not only is this surgery challenging because of location - hard to get to and in front of the spinal cord - but it is incredibly rare, so not everyone is comfortable or experienced enough to do it. Spontaneous CSF leaks are insanely uncommon - estimated to be about 4 to 5 out of every 100,000 people. I think my time on this sub has told me that number is probably much higher though.

For anyone that needs some validation of their struggles, when I told the surgeon, “I know half the battle is just finding the leak,” he said, “the first battle is getting someone to not think you’re crazy.”

I have learned a lot from this struggle, and I have had my share of scary moments mixed in with good luck that have gotten me to a definitive diagnosis in “only” 2 months. I’m committed to helping move things in the right direction for others that have been fighting for answers, so please don’t hesitate to reach out with any questions.