I developed Lhermitte's Syndrome shortly after treatment started and I really noticed it walking down stairs and looking down. I was told it was temporary but 4 1/2 years later, it is still there. I have learned to avoid looking down when walking down stairs because it sometimes feels like I am disoriented from the sensation. I read someplace it could be a side effect of platinum based chemo agents but I also learned it is a side effect of radiation. My hematology oncologist says it is from the radiation and my radiation oncologist says it is from the cisplatin. The tie breaker went to the neurologist who has studied post radiation syndromes and he says radiation. I almost forget about it sometimes but I just have to look down when I go down stairs to see if it is still there. I hold on to the hand rail and chuckle because it always is.

I just learned when it can be unnerving like walking down stairs and just live with it.