Funny - Girlcat is worried about being overtreated and I am worrying about the opposite! Just goes to show that there is more than one way to treat the beast.

Hi,

I just noticed this a few weeks ago, approximately two and a half months post treatment.

It happens when I lower my head to my chest, and feels like nerves are "stretching" down my spine, all the way to my butt and sometimes all the way down to my heels. It's really weird.

This is a good example of what a blessing this forum is, especially with the "search" feature...I can do a search and see that I'm not alone and that others have experienced the same thing.

Thanks to all of those before me, blazing the trail and sharing their stories!

Oscar

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.

I had it very strongly for the first 4 or 5 months post treatment. It has subsided now to the point where most days I do not notice it. Partially, it is masked by the nerves reconnecting from my neck dissections and the "interesting" sensations caused by that and the neck fibrosis. ;-)

I love to play golf, so every now and then when I look down at the ball or bend to put the tee in the ground, the zapping will start, which is a bit disconcerting. Like anything else, it becomes part of the "new normal" and we learn to adjust.

I can't believe that!!! I have never read anything posted here before about that Lh Syndrome thing and I plan to read up on it but I had it big time and now only occasionally. I just never made any connection to my Tx and none of my doctors ever mentioned it so I thought it was the beginning of Alzheimer's or something. LOL

If others have experienced this and you're further along than me, does it completely resolve itself or, like evrything else, does it just depend on evrything?

Wait a minute, I guess I don't have that Lh thing. I just looked it up on the internet and I don't have any pain when I look down or numbness in my hands. I guess I just read what I wanted to see. My problem was that I would be walking down a flight of stairs without looking, you know from memory and all of a sudden it's as if my memory went out and I would have to look down to see the next step or I would feel like I would fall. Really bad right after Tx ended but it only occasionally happens now. Maybe it is Alzheimer's.

I thought it was from when I had my peg tube and would sleep on my side, causing a misalignment of my spin. I have the same symptoms as Oscar. On my back just below the base of my neck I have a numbing feeling and also at my lower back. I can really feel it when I look down. It never occurred to me that it could be related to the radiation.

Mine is more like an electric shock that travels from the neck down the spine. It feels like you are literally stretching your spinal cord with a strange sensation and sometimes tingling in the hands and feet at the same time.

Too bad I can't find "Sabrina's butt dance". She posted on here years ago and she met someone from the board for lunch and as they were sharing treatment and "issues" stories, she was sort of showing how to bring on the sensation and to read her account I could imagine this fiesty Hispanic/Latino girl doing the chicken dance through a restaurant and two women bursting out in laughter as they compared notes and sensations.

I guess you had to be there or at least read it first hand.

Ed

I was there. Too bad we lost that post. That was one of the funniest threads on the board. She had the whole world doing this 'butt dance' with her. Wonder how she is doing. Do you ever hear from her Sheldon?

Take care,
Eileen

I am 10 months out of TX, and while the L'hermitte's has lessened somewhat, I have found that a rise in body tempurature, such as with running or taking a hot shower, can bring on symptoms.