LHERMITTE'S AS A SIDE EFFECT OF TREATMENT

luv4lacrosse
luv4lacrosse Member Posts: 1,410 Member
in Head and Neck Cancer #1
I noticed that I started to feel the signs of Lhermitte's coming on last February while on a trip in San Antonio. I was taking a brisk walk when I looked down for some reason and felt the "electrical shock sensation." I am 13 months post treatment and still have this side effect.

I am looking for feedback from people who still have this after their one year post treatment anniversary. Some people have said "if you get it, expect it to last for 6 months to one year,but then it should start to go away."

I typically only get the shocking sensation when I am cycling and or walking / running on my treadmill. I can work out aggressively with weights at my gym, and most imes I do not experience it.

I was walking on my treadmill last night at a good clip and on an incline when the shock was so bad, I almost was thrown off the treadmill.

Mike

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Mike

    There are a lot of us here that have this, mine is not too bad. I forget what it is called but sure someone will come on and give you the right name for what we call it here. The cause is from radiation on the neck and making the spinal cord shrink, so when you move you head down it pulls the spinal cord or so I am told. Just another little side affected

    Hondo
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    Feels kinda good, doesn't it?
    LOL, actually it is the wierdest sensation in the world. I had it, pretty significantly, toward the end of radiation. It was one of those things that gradually faded away. For me, I wasn't aware of its disappearance until one day I stopped and tested myself, to find its absence. All it took for me was to bend my neck forward.

    I'm going to say, over gradually decreasing frequency and intensity, several years, maybe as many as five, to completely vanish. I'll let you know if I get it again with this round of XRT.
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    #4
    Mine was treated and gone in 3 MONTHS!
    I had this too. Putting your chin down triggered it as did any pounding exercsie like running. It's caused by fluid swelling and pressure on the upper spinal column. My Rad-Oncologist said that it sometimes happens and it would go away on its own within 3 years. Theer's not much you can do about it.

    But my Chiropractor is also trained in nuerological care and physical therapy as well. I started doing twice weekly adjustments with him in which he worked on my neck to clear out the excess fluid and also break up the fibrosis and "thickened" tissue. In only 3 months, the L'Hermittes was GONE! I would also say the fibrosis is gone by about 85%. There's only a small part just above my adams apple left.

    Consider finding a chiropractor or physical therapist who knows what it is. Don't tell them the name. Describe the symptom. If they say it's L'Hermittes, they've learned about it. It's not a name commonly heard. Theer is treatment to help this go away. Theer's also lymphatic massage that I do daily in the shower every morning to help clear out and push down lymphatic fluid. That helps as well.

    Good luck!

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