My husband developed a massive CSF leak after back surgery about ten years ago. For two weeks he had CSF literally dripping out of his incision and surrounding area so much that I couldn't keep enough pads on him as he would soak right through. His Orthopedic (the one that did the surgery) finally admitted that he tore a hole in his spinal cord covering and admitted him to the hospital. After two blood patches (the first one did not take) he was released. A few days later the headaches came back. (This was a workers comp issue by the way as he hurt his back on the job.) After my husband complained about the headaches for several months, the insurance company relented and he had a (forgive me for not knowing the name) test where they put the radioactive isotope in him and scanned him at different intervals. I am not a doctor but they had my husband lying down the whole time, and scanned him at 2, 6 or 8 hours (it was a long time ago). Now as you know the CSF leaks get worse when you are upright and moving about. The more active my husband is the worse the headaches get. He was told to come back in 24 hours for a final scan but when he arrived they said he didn't need it that it wasn't a CSF leak. The headaches never got better. He's fine when he is lying down but the longer he is up and the more he exerts himself the worse they get until he has to lay down again. Typical CSF headaches. To make a long story short, In the past ten years he has gone to many different neurolgist's who just scratch their heads. He is seeing a pain management Doctor now that has him on so much methedone that he is basically a zombie. He gets up, walks the dog, lays down, gets back up after a couple hours, walks the dog, lays down, gets up watches the TV awhile and goes to bed. Needless to say he has no quality of life. He is on SS Disability. I know he wants to get better but I think he has given up as no one wants to do another scan or any other testing to see if he still has a slow leak which we both believe he does. My Question is, are there any tests that we can have done on our own for example can we go to an independent lab and have tests done to put this question to rest. What kind of tests can be done and how costly? At this point I will pay anything! Do you personally think after all this time that he can still have a slow spinal fluid leak? I want my husband back!!! There is no other explaination for his headaches. By the way a couple of years ago I had a CSF leak after a lumbar puncture, thank goodness my blood patch worked. I can't imagine my husband living with that pain everyday. Thank you for your help
It is indeed sad to know that this has stretched so far. What did the doctors tell you, if it was not a CSF leak ? And there is a procedure of patching it up with the subcutaneous fat. To confirm if it is CSF, you can get the sample tested in some laboratory. With the CSF leak for such a long time, chances of infection are high. Did he have any infections spread through the CSF ?
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