General Category > AN Issues

CSF leak prior to treatment

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JaneK:
Hi Flo,
I'm brand new myself and still waiting to be seen at Mass General but I explained to the doctor and radiologist tech before my diagnosis that last spring I noticed a salty water that drained from my right ear, the one now with two an s behind it. It was a decent amount, I'd say about a tablespoon. Then my ear had a salty residue which I kept noticing when it dried for about 2 weeks. I don't have any explanation, there was no trauma or problem present at the time just fatigue. That was followed by brain fog and difficulty with word find and a little slurred speech and auditory processing problems for the two weeks that followed the ear drainage. I thought it was fluid that was trapped in my ear that finally released but now I'm thinking it's possible that it was a CFS leak, mostly due to the tiny crystals that remained after the fluid dried. I had slight crystals in my left ear too and I show no an in that one but I definitely have tinnitus in that one as well with fluctuating hearing loss. I don't know what to make of it but I think it's very possible.

alabamajane:
Jane,
I’d definitely remember to tell Dr Barker about it,,

Jane

ANSydney:
Jane, your symptoms, some of which don't sound related to your tumor could be due to CSF leak. Do some symptoms become better or worse when you lie down as opposed to standing up?

Flo2009:
You should definitely get tested for a CSF leak, Jane! It’s pretty important. Not only is the leak itself problematic, but if CSF is getting out, that same hole it’s leaking from, can also let bacteria and other nasty things in!
Testing is as simple as just taking a sample of the fluid (or even the crystal residue). The hard part is finding the actual location and cause of the leak. Read up a bit on the subject. There’s actually quite a bit of information out there for such a relatively rare condition. Let us know what you find out!

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