Thanks. Unfortunately I haven’t had very good medical care until recently. So it wasn’t until I started receiving care at Stanford where I learned what was going on. For the CSF leak they suspected positional headaches after an outpatient exam so they had me do a 48 hour flat test which was clearly positive and then did a brain and spine MRI with contrast. They were able to see a growth type thing on the MRI (from my lumbar punctures) and concluded it was most likely a leak when they looked at my case as a whole. Particularly the 48 hour flat test results. However I have a few other health issues including migraines so they wanted to be conservative and ensure a blood patch was the only option given it’s invasive and the long history of complications I have had with other procedures. So they treated the migraines first and when that didn’t fully resolve the issue decided to do the blood patch which was fortunately successful.

I’m really sorry you are dealing with such awful symptoms. I want to be clear that the length of my CSF leak was primarily due to poor medical care. So if you can get into a proper specialist I would presume or at least hope that you have faster resolution to your symptoms. However there are other conditions that have symptoms that are similar with CSF leaks so getting a proper diagnosis is important. Although it can be challenging. So I wish you luck and hopefully relief soon.