I was diagnosed with having a spontaneous CSF leak and received an epidural blood patch in January, 2008. I suffered from excruciating headaches and nausea for 2 months prior to being properly diagnosed. I did not previously have a lumbar puncture or trauma (except for car accident 14 years ago) which lead to the leak. MRI's determined there was a leak but could not determine the location of the leak.

I continue to be plagued by headaches (exertional - i.e. bending down, getting out of a car, as well as severe headaches) which lead me to investigate further on the internet. My last bad headache was just last week, a doosy lasting 6 days - I almost ended back in the hospital due to the intensity of the pain. Tylenol #3 helped take the edge off. I am learning to live with the "new normal" - my memory and stamina is not what it used to be.

I am my neurologist's first case of spontaneous CSF leak and he had declared my case resolved due to my latest MRI in April, 2008, although I am not 100% back on my feet, I am functioning and back at work full-time. I don't think my doctor knows what else to do with me.

I had enquired whether I could be part of a study group, to which my doctor answered negatively, saying there wasn't enough patients like me. I wonder if I could be of any interest if you are aware of any study groups so that perhaps my case may help others, and vice versa.

Sophie