Welcome to NT!

It seems like CSF leaks are rare and very few docs really know how to deal with them. They have treated yours the same as if it were due to a lumbar puncture -is that how it happened? If not, they probably need to figure out where the leak is in order to patch it.

In that case if I were you, I'd skip the general neuros and get to a major clinic - like Mayo. I'd want all the experts available looking into this to get it resolved asap. You've suffered enough, and this needs to be fixed.

Meanwhile, what I was told after the lumbar puncture may help you with your low CSF. Drink plenty of caffiene and water, to help replace the spinal fluid. Lay down flat (I know you can't do that all day, but as much as possible). Avoid lifting and straining.

I'd also avoid aspirin and products that contain it - that can keep your body from clotting and closing that leak.

Good luck. I really hope you get some relief soon.