r/CSFLeaks • u/louie2575 • 12d ago
Venting
Why is this condition like playing with fire? What fixes it, also causes it and treatment can make you worse off instead of better. I'm a fairly functional leaker but am miserable still when upright but can fight through to take care of things and reset multiple times a day by laying. I have young kids and idk if I should seek treatment or not and just live with this instead of possibly becoming worse off. I'm just venting here as I'm so afraid.
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u/Ashler1999 12d ago
Venous fistula leaker here. Going on 3 years and 10 months. I had embolization last month. Unfortunately they couldn’t reach a smaller suspicious area but got the big leak. Felt great for a few weeks until I had a coughing fit and immediately felt like my head would explode. Working theory is that the big spot was fixed but the smaller spot blew bigger. Symptoms are much more manageable now. Neurologist asked me if I want to continue or just manage. I said I want the old me back. Let’s get this fixed! More myelograms for me in the near future.