I believe I have a CSF leak somewhere in or around my ear. I lonly eak fluid down my throat and when i do, I head a horrible headache, dizzy, tremors, numbness in my arms/legs, loss of dexterity, weakness in my hands and unable to grip, ringing in my ear etc... etc.. when i lie down and drink tea it usually improves.
i notice what triggers it is when i twist my neck, lift anything with my right arm, valsalving, bumping my head or a lot of activity.
how do i go about getting this diagnosed and fixed? i saw a neurologist and he felt since my MRI was clear that I am fine. I feel that this leaking is intermittent and will only show up on a scan if i'm actively leaking. my ent thinks i am not leaking as well and says just as long as i'm not leaking out my nose there is nothing he can do. i do get the occasional drip out my nose but not often... it does however gush down my throat.
i've tried waiting this out to see if i can heal but it's been almost 2 years and i have only improved a bit.
Thanks for writing in.
I would suggest you to get a lab exam of the fluid done just to make sure that it is indeed a CSF leak that you are suffering from. CSF leak can result in lowering of ICP or intracranial pressure. It is also important to remember that CSF leaks either out of the nose or the ear or the site of dural puncture in the spinal cord.
That is a very interesting piece of information. I had a CSF leak out my nose last year. It was a very sudden gush and then a couple of times it dripped a little. Immediately went to PCP and told him what happened. I even saved some of the fluid in a cup to show him. He said it wouldn't do any good to test it, that it would only show as being a bodily fluid. That seemed strange to me a the time because I figured with all the tests out there they had to be able to get closer than that. Thank you.
there is no way i can gather my fluid as i only get an occasional leak out my nose and the rest flows down my throat on the back right side.
it use to flow constantly and i was in pretty rough shape then however now it flows every few days. so it's getting better but it's been 2 years and i have to keep my activity very limited so i stay well.
i really don't know what to do from here. or what sort of specialist to see for this.
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