Connect
← Return to Encephalomalacia, anyone?
Discussion
Brain & Nervous System | Last Active: Sep 1 10:48pm | Replies (37)
Comment receiving replies
18 months after meningitis & brain surgery from CSF leak and went from recovery to migrating severe muscle spasms, weakness & pain reducing daily function at least 30%. Digression occurred over 6 month period. PT, gabapentin, lots of Tylenol, & weed keep me moving. 2 neurologists no comment on encepholamalacia. MS, lupus, many potential causes ruled out. Concerned & no help from docs. Anyone else?
Replies to "18 months after meningitis & brain surgery from CSF leak and went from recovery to migrating..."
Connect
Im in a confusing state with my neurological office. I also have cervical dystonia that causes muscle spasms and they have gotten far more severe over the last 9 months. I have interval progression of mild cerebral atrophy and subcritical encephalanacia of the lateral aspect of left temporal lobe. Trying to get any answers from the neurologists have been horrid. Im to the point I can’t hold my head up more than a few minutes after 2-3 pm . I HAVE to lay down at that point. I’m not even sure of the pain is from my head or my neck. I have been disabled since 2017 and my 3d TBI. In my mid 50s at this point. I don’t see a future anymore.
Pretty scary.!
I hope you get the answers soon! These terms and diagnosis that keep getting thrown at me . I don’t understand.
I wish you better luck going forward with your neuro team than I have had.
Best to you.