Originally Posted by hemyinspain

Hi, Im so sorry to hear your story, it sounds almost identical to mine! I too had surgery L5/S1, during which I had a dural tear, a week later I had a massive CSF leak, and was rushed back into hospital in and out of conciousness. They repaired the leak a few days later but during surgery I contracted meningitis. 2 days later a further massive CSF leak from the repair site. but they could not operate until the meningitis was treated. Finally after 12 day they operated again to repair the leak a second time. I was in hospital 3 months in total and then sent home on bed rest. 3 days later I had what I believe to be another leak although this time the fluid wasnt actually leaving my body. It just accumilated in the back space to a size of a grapefruit. I was told there wass nothing they could do and stay on bed rest. This all happened in Sept 2007. I believe I am still leaking but am really at the end of my tether trying to get someone to believe me. I have had a radionucleotide cisternography in 2008 which showed a leak after 48 hours but still no one believes me. I am now living with the diagnosis of 'migraines'! I am trying to get a referral to see Dr Linda Gray or Dr Schievink through the British National Health service. Long battle I think but I wont give up. I so hope that you get healed and sealed and if you can see either of these doctors then that would be the best thing you could do in my opinion. Good luck I really wish you the best x