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Dealing with a Suspected CSF Leak and Chronic Headaches

Olive3

523d

Just joined the app, but sad to see that there isn’t a tag/group for cerebrospinal fluid leaks. I have a suspected leak causing from an osteophyte at T10/T11 and they suspect that it is causing a low pressure positional headache. Anyone else dealing with a spinal CSF leak? I had a non-directed blood patch at Cedars in June and then a fibrin patch in September at Stanford. Neither worked and I’m experiencing daily headaches, tinnitus, brain fog. I also have had chronic intractable migraines for many years—the positional element started about a year ago.

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Chronic Headache

Cerebrospinal fluid rhinorrhea

Spinal Blood Patch

Chronic Migraine

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Top reply
    • CaliS

      300d

      Hi I see you posted a while ago. Wondering how you all are doing? I had a blood patch for CSF leak following a lumbar puncture to diagnose MS (unfortunately positive). The patch worked for a couple years. Then acute onset symptoms again which matched symptoms of a leak. But I had a number of doctors dismiss me or give me silly diagnoses (tried a lot of meds and also physical therapy for my neck!) so I gave up for a while. Functioning is so impaired it’s really frustrating. So I started advocating for myself again. Finally recently I got a good doc, and now I have an appt scheduled with an ‘intervention radiologist.’ Hoping for a blood patch and that it works… and wondering if there’s a way to minimize the possibility of a leak returning??

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    • CaliS

      300d

      Hi I see you posted a while ago. Wondering how you all are doing? I had a blood patch for CSF leak following a lumbar puncture to diagnose MS (unfortunately positive). The patch worked for a couple years. Then acute onset symptoms again which matched symptoms of a leak. But I had a number of doctors dismiss me or give me silly diagnoses (tried a lot of meds and also physical therapy for my neck!) so I gave up for a while. Functioning is so impaired it’s really frustrating. So I started advocating for myself again. Finally recently I got a good doc, and now I have an appt scheduled with an ‘intervention radiologist.’ Hoping for a blood patch and that it works… and wondering if there’s a way to minimize the possibility of a leak returning??

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      Reply
    • Savanahp

      482d

      Hi!! I have had those patches 4 times already

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      Reply
    • Dragscorp

      488d

      Hey! Also joined this for the same reason. I'm a spontaneous csf leaker. Going on 6 months since onset of positional headaches. But had continuous migraines for a decade. How are you getting on xx

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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