Lhermitte's Syndrome??

Greg53
Greg53 Member Posts: 849
edited March 2014 in Head and Neck Cancer #1
Hey Everybody

I thought I was getting lucky and missing one of the many lovely side effects we all enjoy. But alas as luck would have it, I started getting the shooting "electric shocks" down my neck when I look down. I know this has been discussed before - Lhermitte's Syndrome I believe, but didn't read too close since I didn't have it. Just curious how long this goes on for? I'm 4 months post-treatment. Is that typical when it comes on? I thought I'd be past the time it would start up??

My best to everyone!
Greg
«1

Comments

  • Scambuster
    Scambuster Member Posts: 973
    #2
    10 Months and still a bit of the ol' Lhermittes
    HI Greg,

    Mine has reduced considerably and I only occasionally notice it at 10 months outs. No big deal.

    Scam
  • davidgskinner
    davidgskinner Member Posts: 81
    #3
    My story
    I got this too, along with neuropathy to my feet and it came on for me about two or three months after finishing chemo/radiation. Scambuster had an informative post about it a while ago. It was/is really unsettling and kind of scary, after everything we've already done. I ended up going to a neurologist after talking to the oncologist. The belief (for me) is that the likely culprit is cisplatin. Right now I am taking Neurontin (gabapentin). That is helping a bit. I was advised to keep trying to exercise regularly and try to ignore it. Believe it or not, that has worked because for me it doesn't really hurt too badly, it is just annoying. Lately it seems to be slowly improving, and it has been a few months since it started. I was told by the neurologist that "most people who are like you ( in their 40s, relatively good health) who have this occur due to chemo see it improve and go away over time." Of course, no one is making any guarantees!
    Fun times, huh?
    David
  • Greg53
    Greg53 Member Posts: 849
    #4
    Scambuster said:

    10 Months and still a bit of the ol' Lhermittes
    HI Greg,

    Mine has reduced considerably and I only occasionally notice it at 10 months outs. No big deal.

    Scam

    New Book
    Hey ya Scam,
    How goes it? In between my "fun reads' just read a new book on C. "Cancer: Complete Recovery Guide" by Jonathan Chamberlain. Interesting read if you get a chance. Gives brief info on all types of treatments from orthodox to alterntive. I thought it was worth the time.
    Greg
  • santa6
    santa6 Member Posts: 29
    #5
    Fades
    I had it from about 4 months out until just recently. I am 9 months out now. When I first noticed it I spoke with the ENT/Oncologist/surgeon and he knew exactly what it was, said it is normal and will resolve itself in about six months. Mine took 5.

    If we could only have bigger turkey necks we wouldn't be able to tip our heads down - that it what used to trigger mine - tip my head down and boom - numb below the waste.
  • dogsrule
    dogsrule Member Posts: 96
    #6
    santa6 said:

    Fades
    I had it from about 4 months out until just recently. I am 9 months out now. When I first noticed it I spoke with the ENT/Oncologist/surgeon and he knew exactly what it was, said it is normal and will resolve itself in about six months. Mine took 5.

    If we could only have bigger turkey necks we wouldn't be able to tip our heads down - that it what used to trigger mine - tip my head down and boom - numb below the waste.

    still having it
    Mine started about 3 mos. post radiation. It's not as bad now. I have noticed it is worse after I have walked or if I am tired. It seems to be fading but it is still happening. I had radiation and 2 rounds of erbutux. I am 5 months out. Now if I could only get rid of these hot flashes. It's always somethin.
  • pattyanny
    pattyanny Member Posts: 544
    #7
    Hi Greg!
    Ahhhhh! Been there -have that! It started about the same time with me -3 to 4 months out.
    Now, as has been posted, it happens mostly when I am tired. This too shall pass Greg.
    Every time I think I have adjusted to my "new norm" - something else pops up! =(
    Just what the heck is my new norm????
    Blessings! Patty
  • micktissue
    micktissue Member Posts: 430
    #8
    17 weeks; now gone?
    Hey Greg. I just tested mine and it's gone! I'm 17 weeks post-treatment. I haven't noticed it lately and your post reminded me to check.

    Best,

    Mick
  • Glenna M
    Glenna M Member Posts: 1,576
    #9
    Still got it...
    I am now 10 months post treatment and I still have the "electric shock" sensation but it only happens when I tilt my head to look down. Didn't realize there was a name for it, just thought it was normal after treatment. I also have mild neuropathy in my hands and feet which the medical oncologist said would not get any worse but "might" get better. These are both mild side effects that I feel I can live with, much better than the dry mouth that I still suffer from and minimal saliva production.

    Many others are suffering with much worse effects than I am so I still consider myself one of the "lucky ones". As long as my scans keep coming back showing that I am still in remission I will really consider myself LUCKY!!!

    Hope everthing improves for you daily and you are soon no longer bothered by the side effects.

    Take care and stay strong,
    Glenna
  • Landranger25
    Landranger25 Member Posts: 210 Member
    #10
    Glenna M said:

    Still got it...
    I am now 10 months post treatment and I still have the "electric shock" sensation but it only happens when I tilt my head to look down. Didn't realize there was a name for it, just thought it was normal after treatment. I also have mild neuropathy in my hands and feet which the medical oncologist said would not get any worse but "might" get better. These are both mild side effects that I feel I can live with, much better than the dry mouth that I still suffer from and minimal saliva production.

    Many others are suffering with much worse effects than I am so I still consider myself one of the "lucky ones". As long as my scans keep coming back showing that I am still in remission I will really consider myself LUCKY!!!

    Hope everthing improves for you daily and you are soon no longer bothered by the side effects.

    Take care and stay strong,
    Glenna

    10 months, almost gone
    HiGreg. I am at 10 months out now and mine is almost gone. no problems in feet or hands. I am so close to the magic "if it's not better by 12 months out it never will" time that I don't expect any bigtime changes. I am still amazed at the cycles my mouth and tongue go through this far out. Couple of weeks ago it was weird tongue sensations and a couple little "sore" spots on it. This morning I wake up with a bad spot on the inside of my cheek. Oh well, take it as it comes. Good luck.

    Mike
  • chris731
    chris731 Member Posts: 24
    #11
    I have it
    to when I look down. I have a little tingling in my feet. More on the left side, but I had back problems before all this. My chiroprator believes my spine is out of alignment again from all the sitting I did while going through treatment and because it's more my left side.

    So once I get my PEG tube out, which is next week, I'm hitting his alignment table. But it isn't that bad, I can deal with it for now. I'm 5 months out and it started roughly last month.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
    Moslty Gone
    Greg, you just want to be like the rest of us don't you, LOL...

    I'm almost 14 months out and I just rarely feel it anymore. It's also much less intense, barely noticeable.

    Best
    John
  • delnative
    delnative Member Posts: 450 Member
    #13
    Skiffin16 said:

    Moslty Gone
    Greg, you just want to be like the rest of us don't you, LOL...

    I'm almost 14 months out and I just rarely feel it anymore. It's also much less intense, barely noticeable.

    Best
    John

    Mine lasted a year
    But it's gone now.
    It never bothered me that much -- it was just kind of weird.

    --Jim in Delaware
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #14
    delnative said:

    Mine lasted a year
    But it's gone now.
    It never bothered me that much -- it was just kind of weird.

    --Jim in Delaware

    10 months, and counting
    Greg- first noticed mine at work last September, and still get to experience it when looking down, and doing strenuous tasks with my right hand. All of mine is right-side, which is the opposite of where my tumors were.

    Had a regular Dr. visit today. Mentioned this "sign" to him, and he's never heard of it. I even spelled it out for him, and reckon he's Googled it by now.

    kcass
  • Scambuster
    Scambuster Member Posts: 973
    #15
    Greg53 said:

    New Book
    Hey ya Scam,
    How goes it? In between my "fun reads' just read a new book on C. "Cancer: Complete Recovery Guide" by Jonathan Chamberlain. Interesting read if you get a chance. Gives brief info on all types of treatments from orthodox to alterntive. I thought it was worth the time.
    Greg

    L'book syndrome....
    Hi Greg,

    Thanks for the scoop on the Chamberlain book. i will try to get hold of it. I also like to mix a bit of fun reading with the informative stuff. I recently finished the Millennium trilogy which was excellent. The first one I read not too long out of treatment - and it was a great escape. I have about 3 on the go at any one time and really enjoy my books.

    Cheers
    Scam
  • Greg53
    Greg53 Member Posts: 849
    #16
    Kent Cass said:

    10 months, and counting
    Greg- first noticed mine at work last September, and still get to experience it when looking down, and doing strenuous tasks with my right hand. All of mine is right-side, which is the opposite of where my tumors were.

    Had a regular Dr. visit today. Mentioned this "sign" to him, and he's never heard of it. I even spelled it out for him, and reckon he's Googled it by now.

    kcass

    Thanks Everybody
    Thanks for the info everyone. Hope everyone is having a good weekend! My wife must think I'm normal. She has me cleaning the grout on the kitchen floor, painting the bedroom and cleaning out the basement this weekend. Doesn't she know I'm sick?!?!? LOL. I think I'll tell her all my ailments...turkey-neck, L'hermitte, hairball throat, chemo-brain, waffle-head. Some reason I don't think it will do any good though....Back to work. My best to everyone!
    Greg
  • uvm1978
    uvm1978 Member Posts: 33
    #17
    L'Hermitte's Syndrome
    I am now 4 months post radiation and started experiencing the electrical shocks radiating down my legs a little over 3 months post radiation. I actually thought it was related to a medication I just started for high cholesterol, but found out from an oncology nurse friend of mine that I should check with my radiation oncologist. I got the nurse first and she told me that my symptoms were not related to the radiation, I even explained that they occurred mostly when I tilted my head and neck forward. When I pressed her about what the doctor said, she said she hadn't even checked with him. She called back later to say that the doctor had corrected her and that this was in fact related to the radiation and was called L'Hermitte's Syndrome. She said it typically presents a few months after radiation and usually resolves on it's own within 6 months. She said they will monitor me, I go in for checkups every 6 weeks rotating between my surgeon and radiation oncologist and that they will provide me with a referral if it doesn't go away. It would be nice if they offered radiation patients a list of possible post radiation side effects so we aren't always guessing what's related and what is not.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #18
    uvm1978 said:

    L'Hermitte's Syndrome
    I am now 4 months post radiation and started experiencing the electrical shocks radiating down my legs a little over 3 months post radiation. I actually thought it was related to a medication I just started for high cholesterol, but found out from an oncology nurse friend of mine that I should check with my radiation oncologist. I got the nurse first and she told me that my symptoms were not related to the radiation, I even explained that they occurred mostly when I tilted my head and neck forward. When I pressed her about what the doctor said, she said she hadn't even checked with him. She called back later to say that the doctor had corrected her and that this was in fact related to the radiation and was called L'Hermitte's Syndrome. She said it typically presents a few months after radiation and usually resolves on it's own within 6 months. She said they will monitor me, I go in for checkups every 6 weeks rotating between my surgeon and radiation oncologist and that they will provide me with a referral if it doesn't go away. It would be nice if they offered radiation patients a list of possible post radiation side effects so we aren't always guessing what's related and what is not.

    Lucky
    I think you are probably lucky that they were even aware. It seems in reading a lot of posts on here, that most MD's don't associate the symptoms.

    Of course this is a great source (the forum), we knew of it before most it seems....

    If I remember correctly, DelNative was the first to mention it...

    Also, six months is a little early for it to deminish, it's usually more in the 12 - 14 month range.

    Best,
    JG
  • Goalie
    Goalie Member Posts: 184
    #19
    Skiffin16 said:

    Lucky
    I think you are probably lucky that they were even aware. It seems in reading a lot of posts on here, that most MD's don't associate the symptoms.

    Of course this is a great source (the forum), we knew of it before most it seems....

    If I remember correctly, DelNative was the first to mention it...

    Also, six months is a little early for it to deminish, it's usually more in the 12 - 14 month range.

    Best,
    JG

    Shockingly timely
    Mine just started at three months post treatment. I was wondering if it was something from an injury or from recent neck dissection but didn't think so. I still can't do sit-ups because of the operation but can do other exercises. Have been going to the gym and have started playing hockey again but didn't remember doing anything to the neck. It is fortunately not constant but is kind of annoying.

    But now that I know it is neither serious nor permanent I feel a lot better. Thanks so much. I sure am tired of going to doctors and getting things tested (and paying money). Doug
  • adventurebob
    adventurebob Member Posts: 691
    #20
    Lhermittes?
    Hey Greg,

    I get these really weird electrical like impulses in my head when I look to the left that just started up a few days ago. Is that similar to what you're experiencing? Was it Scam that posted the original info on Lhermittes?
    Good to hear you're getting some weight back and honey-do'ing. That's always a sign of healing. If the Mrs. thinks you're well enough to work you really must be.

    Bob
  • Greg53
    Greg53 Member Posts: 849
    #21
    adventurebob said:

    Lhermittes?
    Hey Greg,

    I get these really weird electrical like impulses in my head when I look to the left that just started up a few days ago. Is that similar to what you're experiencing? Was it Scam that posted the original info on Lhermittes?
    Good to hear you're getting some weight back and honey-do'ing. That's always a sign of healing. If the Mrs. thinks you're well enough to work you really must be.

    Bob

    Hey Bob
    Bob,

    Definitely sounds like L'hermittes. There were several posts prior to mine that discussed this (and actually my original post is 6 or 7 months old). My L'hermittes is fading now. Almost sad to see it go. It was a good way to wake myself up in the afternoon if I dozed off at work. Actually this was an easy sympton, kinda weird at first and then not to sound weird, I kinda liked it. Only happens occasionally now and I'm 10 months out (dang, almost 11 months).

    Have you been hiking any??

    Postive thoughts!

    Greg

Discussion Boards