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Lhermittes

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Hello All! Just checking in, it's been a while. I've had computer problems, ugh! Anyway just wondering if any of you out there have been effected by Lhermitte's syndrome? I'm wondering how long it lasts? For those of you that are unaware of this crazy thing it is a sort of an electrical shock that goes down your back and legs all the way down to your toes each time you bend your neck and head forward. Onc said it's another gift from radiation. The way I understand it, the muscles in the cervical area become a bit hardened and compress the nerves in that area causing the zapped numbing feeling I get each time I look down. It's not pleasant but not painful either. I just have to be careful that my legs don't give out on me. It started at about 4 months post treatment and as per my onc that is right on time. So I'm wondering if anyone else has had this.
Other than that, I'm working hard with my swallowing therapy and also on trying to get my voice back or at least better than it is now.
I hope everyone is well and know that I say a prayer for all of my H&N family each time I say my prayers!
Take care,
Billie

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

Everytime I look down, and that is every SINGLE time... it's like I just gave my feet a shock...very weird sensation, to say the least. I'll be curious too, as to what others say...I knew what it was from, but I have no idea is this is a permanent thing, or a passing thing.

p

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

So does it only go to your feet or does it happen in your legs too? Mine goes from mid thigh down to my toes and it doesn't stop until I look back up. Crazy stuff!
Billie

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

I don't feel anything in my legs, just my feet. Also, mine is just momentary...it doesn't continue...more like I stuck my big toes into a socket for a flash shock. I imagine it's what ever nerves are being affected...I had NPC, so my rads would have been in the same general area as yours but different in the specifics...

p

longtermsurvivor's picture
longtermsurvivor
Posts: 1783
Joined: Mar 2010

this lasted about four years for me, way longer than average, with my first rads. It eventually stopped completely. With my second rads I didnt have this at all. Although I never looked at my dosimetry, my guess is they completely avoided my spine the second time.

Pat

katenorwood
Posts: 1821
Joined: May 2012

Hi Billie,
I have this zapping feeling most days...was told nerve damage from surgery though. Mine is when I'm sitting at the table and I bend my head to read the paper, or sign something. Mine goes through my H/N down to my waist. BIZAARE feeling. I've had it for probably around 8 mo's. I guess I just have gotten use to it. Tried gabapentin for it for 6 mo's with no change, so I got off that med. It really does remind me of when I got zapped hooking up a dryer wrong back in the day. Hope yours gets better...or like me just becomes part of the new us. Best to you Billie ! Katie

Laralyn's picture
Laralyn
Posts: 440
Joined: Apr 2012

Mine is pretty much the same as yours. When I bend my head down, I get a wave of pins and needles from mid-thigh down to my feet. It's most distracting when I'm walking and looking down for steps.

When I was traveling for a conference a couple weeks ago, the car rental agency gave me this monster SUV with the gear shift in a weird, low spot. I had to lower my head to look for it all the time, so I took the car back! No way I could drive if I had the pins and needles down my leg every time I had to go into drive or reverse.

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Well not really, but ya kinda....LOL.

But then again, I am Abi-Normal....

JG

Laralyn's picture
Laralyn
Posts: 440
Joined: Apr 2012

Actually, the way I look at it is that lowering my head means I get a tangible reminder from God that I AM STILL ALIVE! :-)

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

You'll actually find many of us on here that had rads have had the symptoms, myself included.

It's actually very interested you referenced your MD as recognizing it...seems very few do.

You're right, it usually starts a few months post rads, and it usually lasts less than the first year.

Another commonality for us is Turkey Neck...many get that around the same time frame and most of it goes away within a year or so once new lymphatic paths establish themselves.

Hope all else is well with you and your man...

Best,
John

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Yes as soon as I said, "when I look down" my doctor finished my sentence and told me what it was. The only thing he couldn't tell me how long it was going to last. He said everyone is different. It's a tad annoying because it will even wake me up during the night if I happen to bend at the neck.
So far no turkey neck but he told me I can expect that too. How perfect, just what every woman wants, lol.
Ugh I'm sure as with everything else radiation related, this too shall pass.
Still no saliva...ugh but my food is tasting better, that's a plus! Oh how I took for granted being able to lick an envelope.
Hope you are well!
Billie.....the girl

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Awesome way to look at it. As long as I don't have to look "down" at it, haha

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Yes, I had exactly what you desribe....mid to upper back all the way down my legs..started at 2months post radiation....is now gone totally (my last rad was January 20, 2012 ...Mine would act up when I bent my head down...or walked to town and back (which was a 20 minute walk) ...I would have to stop bc my legs would get jiggly.. :)

I bet it will go away sooner than you think!

Best,

Tim

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Thanks Tim for letting me know that there is an end to this bizarre thing.
Billie

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Did you say "Jiggy", or Jiggly", LOL...

I think the jig is up.

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

I still have it after 2 plus years. it seems to have lessened a little, but I have managed to try to get used to it. I have to remember when I am on my treadmill to hold onto the handles if I drop my chin towards my chest as the shock effect has almost made me lose my balance.

Might make a funny You Tube Video with me being launched off the back of my treadmill into a wall!!

Best

Mike

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