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

Out of curiosity are you trying to see Dr. Linda Gray and Duke University Hospital?

Hello all. I have had a chronic CSF leak for over 16 years. Have rips in my sheniod sinus. I have had 3 unsuccessful transnasal endoscopic surgeries to try and repair.

I cant believe there are so many people living with this condition for years. I am convinced I have a CSF leak since a craniotomy to remove a benign brain tumour in March. Neurologists agree but no-one seems to be able to actually find anything. Have been referred to an Ear Nose and Throat consultant now - is that usual? Am lying in bed today having felt really dizzy for the past 3 days. My main worry of course is contracting meningitis - at least knowing there are so many people living with this for years means there is a chance I wont get it. Does anyone know the statistics for contracting meningitis with a CSF leak?

Had my surgery four days ago. Everything went fine, they patched the dura and I felt great for 3 days. But today I woke up with the familiar ringing in the ears. Don't really know what to do: should I call the surgeon and go back to hospital? Or should I stay in bed? I will see him next week to have the staples out. I am trying to find something to help dura heal. Does caffeine help? What about enzymes? Wobenzym or vitalzym. Did you try them?

I have had two spinal taps and four blood patches and still have not been fixed. I have been down (90% bedridden) for over 5 months. After every blood patch I feel better for about two weeks, with only slight discomfort, and then it gets worse. I have had a billion MRI's, CT scans, CT Myelogram, etc. and they can't find the leak. My last blood patch we drove & took a train 3,000 miles so that I could lay flat to see Dr. Schievink. He did a full volume blood patch. When we left LA I felt good, but within a few days started feeling bad again. This time with even greater pain in my lower back. He came highly recommended, but I would have to say that he has been hard to reach to get answers. I don't know where to turn from here....

sleepless in st. pete

Did you do MRI with contrast?

Linda,
Are you still out there? Did you finally get sealed up and if so, by whom?