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Thread: CSF Leak or What?!...Weird symptoms!

  1. #1

    Question CSF Leak or What?!...Weird symptoms!

    Howdy Folks,


    Here's my story, and can anyone help? I have had sinus problems for years. Had Septoplasy about 10 years ago. About 7 months ago I thought I was having another Sinus Infection. Antibiotics did not work. Got paranoid and ask my ENT for CT scan. He said my left sinus was blocked up badly and I had a deviated septum again. Had sinus surgery to drain sinuses and correct deviated septum. 3 months later still having weird headaches. Here are my symptoms: Headache only when I lean or bend over forward, cough, or sneeze! That's it! It's very intense, and yet lasts only seconds. As soon as I straighten up it's gone. When cough, or sneeze is over, it's gone! Does not hurt, or change while standing, sitting, laying down. I've seen 2 neurologists , and had another CT scan and 2 MRI's. They seem to think it is a CSF leak but can't find or prove it! Scans show only a "thin spot" of bone near left ethmoid sinus. I have obvious drainage from my nose. Scans also say, "there is no manifestation of CSF hypotension". Now they want to do a "Pledget study". An LP with radioactive dye requiring I lay in hospital bed for 3 days! Would like more answers, or feed back before I do this... Thanks, RJ

  2. #2

    Default Skyvolley

    Quote Originally Posted by Skyvolley View Post
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    Howdy Folks,


    Here's my story, and can anyone help? I have had sinus problems for years. Had Septoplasy about 10 years ago. About 7 months ago I thought I was having another Sinus Infection. Antibiotics did not work. Got paranoid and ask my ENT for CT scan. He said my left sinus was blocked up badly and I had a deviated septum again. Had sinus surgery to drain sinuses and correct deviated septum. 3 months later still having weird headaches. Here are my symptoms: Headache only when I lean or bend over forward, cough, or sneeze! That's it! It's very intense, and yet lasts only seconds. As soon as I straighten up it's gone. When cough, or sneeze is over, it's gone! Does not hurt, or change while standing, sitting, laying down. I've seen 2 neurologists , and had another CT scan and 2 MRI's. They seem to think it is a CSF leak but can't find or prove it! Scans show only a "thin spot" of bone near left ethmoid sinus. I have obvious drainage from my nose. Scans also say, "there is no manifestation of CSF hypotension". Now they want to do a "Pledget study". An LP with radioactive dye requiring I lay in hospital bed for 3 days! Would like more answers, or feed back before I do this... Thanks, RJ
    Should say: I "have NO obvious drainage..."!

  3. #3

    Default

    Hi RJ,
    Sorry to hear what you've been through and I hope since your post that you've gotten answers and improved. THey think I have a csf leak so I'm headed to a neurologist in the next month to see what's next. My mri showed low pressure in my brain so the neuro opthalmologist diagnosed me with a spinal fluid leak. Over the last two months, I have felt similar-when I lean over/down, the pressure in my head increases a lot (headache intensifies). same thing if I sneeze, go the bathroom, or cough. I have learned from both my husband's experience and my own with mri's-it's very important to have the right imaging center/radiologist read your results. One center we went to always misread both of ours. My husband's lesions were missed for his cancer and my low pressure was missed because a general radiologist read them. This is now a big concern for me to follow up on in the future. Just a thought for you. After my third mri, the neuro radiologist said it was on the first one as well but was just misread. Not a good feeling for all the suffering we go through. Best of luck to you. Jeanne

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