Hi all -- I am Leslie and I live in Washington State, US. I just wanted to say that all the answers are not here either. I have been incapacitated by the headaches from CSF leaks for about 10 months. I've had 5 blood patches - two of which helped briefly (couple of days). I've had every diagnostic test to find the leaks (MRI, myelogram, cisternogram, myelogram with gadolinium) and none have shown the leaks.

I apparently have an unusual situation because of multiple diverticula on my nerve roots up and down my spine. They tell me all of these are potential leak sites but they've never seen any leaks in all of the tests I've had. My brain is swollen and sagging below the back of my skull. My pituitary gland is enlarged - which sometimes happens with long term leaking - and it is pressing on other structures in my brain.
After getting frustrated with my lack of successful treatment I sought help from the Mayo Clinic in Minnesota.

After a few more tests, they, too, are at a loss as to what may help. We're considering a new kind of blood patch that is currently being done in Italy - the patient is put in a head down position for 24 hrs after the patch. Mayo has done it with one woman and she only had relief for 10 days so they're discussing what could be adjusted before they attempt it with me.

Seems like a shot in the dark. I'm really frustrated with the lack of options. I have had some good days lately - a couple here and there - so I'm grateful for that. But I don't want you to think that getting to the US will solve your problem - it won't. Maybe they will come up with something new for all of us soon.