Rod has begun having brief electric shock waves going through his body, starting at the neck, then hitting his arms & legs. I have read that Lhermitte's sign can be caused through IMRT in head & neck patients. We are going to the GP on Thursday, and oncologist visit on Feb 13th.....

I have something similar but it usually only happens if I've been walking and then bind my neck forward good luck!

Here is an article about it...


Lhermitte's Sign and IMRT patients

WOW, we reported this to the RO 3 months out from finish of treatment and he said he had never heard of it!

At the time I thought it was either code for "don't bother me with the side effects - thank your lucky stars the treatment worked" or that it was a cisplatin side effect which the RO knows nothing about.

Anyone have any idea how long it takes to ease off (if it ever does)?

Alex describes it as a shock that comes out the bottom of his feet when he jolts his body (eg steps off a kerb). He also reports it is not as bad as this time last year but he has numbness in the balls of his feet.

Hi Karen,
I was just wondering how things have been for Alex since the end of tx. Our case is similar to yours.
Thanks,
Kathy

Hi There,
It's from the imrt radiation. I have it still and I'm 14 months post treatment. I was really scared when I didn't know what it was!

Hi Kathy
Sorry bit slow on catching up with the question but I'm here now. Alex's "electric shock" started happening 2 months out from treatment and went from his neck to the balls of his feet. He suffered stepping off kerbs and any sort of jolt to his body. Not painful so much as it kept suprising him. 18 months out from treatment, he says it has eased off but just last week started complaining about "lightening bolts" going from the outside of his hip to the inside of his knee - especially when he went to bend over (sounds like femoral nerve involvement which is another long nerve). It doesn't stop him doing anything except feeding the cat and cleaning the bath. He is currently training the cat to use a can opener. I am unsure how he found out that he couldn't clean the bath since this is a once in a decade activity and he did it the year before last. But I digress ... the aches and pains are more annoyance than debilitating nowadays.

Unfortunately, sometimes they get him down a bit when he thinks he is moving one step forward and two steps back. I have to remind him that the reason he is noticing the little aches and pains is because he is not being distracted by the "shoot me now" pains that needed narcotics to control.

He is actually going 3 steps forward and 1 step back. This time last year he couldn't stay awake beyond 8.30pm and was on daily codeine based narcotics, struggled to follow complex ideas to their conclusion and was depressed and highly irritable. Today he takes an over the counter pain med about once a week when his back pain gets the better of him (he had a lung collapse and subsequent lung resection right in the middle of chemo just to make life interesting), keeps regular "old fart" hours (in bed by 10ish), is back to reading his SciFi books and can keep enough ideas in his head to solve the problems of the world.