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Intracranial hypotension? CSF leak? But no headache - is this possible?

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twinky
twinky

I'm 2 years into a journey to try & find out what it going on with me. I have been having memory and concentration problems, which are worsening. I also have problems with word finding/mixing. My sleep is affected & I have insomnia and nighttime anxiety - which you could almost set your watch by & comes on from around 8pm. I also get bouts of fatigue and horrible irritability.

I also get pressure at the back of my neck and when bending over and some popping, blocked ear feelings (occasional). But NO headaches other than one major 24hr migraine 2y ago.

I had a head mri 18m ago which showed 'a degree of cerebullar slumping' and some descent of the cerebullar tonsils into the foramen magnum. They said I had Arnold chiari malformation and that it was congenital and should be symptomless.

However I'm continuing to worsen in my symptoms.

I have just had another mri and am now waiting for the results.

I'm just wondering, having done some research whether it is possible that I have intracranial hypotension or a CSF leak and that this is the cause of the slumping and not a chiari at all?? From what I've read it could be cause all of my symptoms, but the most common ones of headaches is missing - has anyone had any experience of this condition but without headaches?? Is this possible and if it is this is it easy enough to detect on mri??

0 likes, 21 replies

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  • M2Loco
    M2Loco twinky

    Posted

    After back surgery almost 3 years ago . Was having bad headaches . It was so bad I couldn't even open my eyes or turn on the lights , couldn't open the shades in my room , even turned the lights off everytime a Doctor or nurse came into my room . I had to deal with that for over a week . The reason I'm writing to you is because I read your article and after the surgery for the past 3 years I have been having trouble with blurred vision , memory loss ,feeling off balance , sometimes I can't remember simple things .

  • jesica69382
    jesica69382 twinky

    Posted

    This is a very late response. are you better? if not, you really need to look into craniocervical instability. also chiari malformation is also known now to not be symptom free. do you have ehlers danlos syndrome?

    i hope you have found or will find your answer.

    Jesi

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