So heres the update from today for those praying. Good news is my pressure is reading right around where my left shunt is set. Prior to my visit for lp this am I was leaking from both ears & left side of nose. Obviously I have a leak that springs into action when pressures get above a certain amount...we all recognize that my brain just decompresses itself. The bad news is my csf was not clear like it is supposed to be so we can only presume I am in another round (or am still in it, whichever) of the aseptic meningitis. I was also told by shands neurology that the earliest I can be seen is Oct. I am *very* disheartened at this point. I am the perfect patient, never miss appts, take my meds, follow instructions and yet I cant get rid of this aseptic meningitis, daily fevers, rotating loss of entire side of my body to numbness, severe headaches, different size pupils, and the list goes on and on. And now my actual shunt tracts from the top of my head all the way down to my chest where they go into my heart on both sides is hurting really bad...that can NOT be normal for any kind of shunt. So, here we wait for lp results. My prayer is that they will be accurate and show something that will spring someone into action to help me get better. Anyone with shunt experience have any idea what the pain all along both shunt tubes means...this is a new symptom. Your perspective as well as my medical friends opinions are greatly appreciated. My drs are ready to just bang their heads against the wall with my case. We know it is rare whatever I have. We also know strong prob of the hashimotos encephalopathy as well as (a new one as of 2nd opin neuro)...neurosarcoidosis. Tired. Just tired. My neurosgn isnt back for another 2 weeks and he has all but given up on me too. Please pray.
Posted on: Fri, 06 Jun 2014 03:36:34 +0000
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