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Lhermitte's Syndrome??

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

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

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Greg,

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

Scam

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

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

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

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

davidgskinner's picture
davidgskinner
Posts: 81
Joined: Dec 2009

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

santa6
Posts: 29
Joined: Oct 2009

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's picture
dogsrule
Posts: 96
Joined: Apr 2010

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's picture
pattyanny
Posts: 523
Joined: Jul 2009

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's picture
micktissue
Posts: 432
Joined: Dec 2009

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's picture
Glenna M
Posts: 1580
Joined: May 2009

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's picture
Landranger25
Posts: 207
Joined: Nov 2009

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's picture
chris731
Posts: 24
Joined: Jul 2010

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's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

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's picture
delnative
Posts: 452
Joined: Aug 2009

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

--Jim in Delaware

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

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's picture
uvm1978
Posts: 33
Joined: Aug 2010

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's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

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's picture
Goalie
Posts: 184
Joined: Sep 2010

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's picture
adventurebob
Posts: 691
Joined: Jun 2010

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's picture
Greg53
Posts: 830
Joined: Apr 2010

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

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Ah, now I see the original date. Perfect timing it coming back around today as I just started experiencing it a few days back. Not too unpleasant but of course my thinking about it was. Very relieved to know what it is. I've been hiking a bit out on the coast. I rented a little cabin out there for the last month and a half. Mainly just long walks up and down the beach; sunrise and sunset. Nice place to recover. How bout you?

Bob

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Bob,

Nasty winter here in the Midwest cut into my outdoor activities big time, including hiking and fishing. I'm hoping the Spring weather cooperates and I can get out and enjoy those pastimes more. Don't have a choice though now, just bought a new pair of boots and I need to go break them in!

Will be sending good mojo to you and everyone else here while on my next trek!

Greg

Slowlane
Posts: 4
Joined: Mar 2011

Wow mine started at 3 months out as well. Still got it now at 4 1/2 months and it is strong. Put me on the ground 2 weeks ago bending over a lot doing yard work. My doc said to avoid nodding my head as much as possible. This is a very helpfull thread. Slowlane

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Welcome aboard sloooowlane....

Most cases the sensation goes away around a year or so out, or nearly goes away I should say.

Best,
John

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

the Lhermittes sydrome started to fade, but then the neurophy set in. It isn't painful, just a little uncomfortable. I have spent quite a bit of time teaching my self how to type and write again with the different sensations of my fingers. Another big one was grabing a large drink from the drive through. Do you drop it or crush it?? I blame the citsplatin for the nerve problems - Judy

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

When I walk briskly, the soles of my feet feel tingly and numb. When I walk long enough, my ankles do the same. I think this is beginning to fade now, nine months later.

Never had any problems typing, but grabbing a drink - no way. I've knocked over a lot of beverages since end of treatment. Running low on glassware.

Deb

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I added to this thread that it's 10 months and counting...still counting. No sign of it lessening to any degree, and I'm now 23-months post-treatment. Not just looking down- also hits me when I'm shaving and get my arms in certain positions.

One thing I do wonder some about is of a condition I had before treatment- arthritis in the lower-right back. During treatment with all the hydrocodone, etc., I didn't have a bit of the old back pain. Since treatment it has gotten much worse than it ever was before. Yes, I'm getting older and physical activity ain't what it used to be, but I'm wondering if the rads/chemo could have affected the arthritis. I know Greg would say it's cause I spend too much time worrying about the north side of Chicago, which is a given, but any other opinions or info on treatment and arthritis would be appreciated.

kcass

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Thanks for all the feedback everyone - it is so helpful. Deb
btw - my maiden name is Deb Lewis, what a coincidence

CajunEagle's picture
CajunEagle
Posts: 357
Joined: Oct 2009

Having finger Neuropathy is a daily mystery. I stopped the other day for a large Iced Tea in a styrofoam cup, and when the girl handed it to me from the service window, I began to insert the straw. Before I realized it, I had pushed the straw through the bottom of the cup and had sweet...Ice Cold Tea all over my lap and the front seat of the car. I just broke out laughing, as the girl gave me this weird look, and another serving of Tea in a waxed cup instead. Guess she figured that this guy ain't right.

Larry

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

A lot of times my left hand goes numb. Especially when I am driving too long. When I went back to Staten Island in Novemeber for my HS reunion, I got out of the car after the three hour drive. My back and neck as well as my shoulder and left arm was killing me. (neck dissection side) My left hand was numb. I opened the trunk with my key and took out my little suitcase and I closed the trunk. I never felt the keys drop out of my hand. :( my dress for the reunion and the keys were locked in the car. The extra set were 185 miles back home in PA. thank goodness I had Toyota roadside or something. They sent a guy out and he opened my car door and I popped the trunk. Cost me nothing. When I food shop now, I open the car doors first, then the trunk and put the key in my pocket. I have an extra key in my wallet, plus the extra key that has always been at my parents. Just in case.

bpell0402
Posts: 61
Joined: Feb 2011

thought i would add my two cents...

there are many treatment options for "nerve pain and symptoms".. your brachial plexus is a large collection of nerves stemming from your neck, into your shoulder and goes all the way down.. i would assume Head and neck radiation would affect these cluster of nerves. you could then develop carpal tunnel syndrome as well.

treatments options i am aware of include: wrists splints at night time if the hand/fingers are most affected, Vitamin B6, exercising and stretching of course! Injections in the neck, elbow and wrist can decrease the inflammation around these nerves and decrease symptoms. Radiofrequency ablation can be used in selected patients to "burn" nerve endings in severe cases to eliminate pain. medications exist such as neurontin (gabapentin), lyrica, amitriptyline and others. spinal cord stimulators can block pain signals that the nerve send out..

there are options.

an EMG/NCV (nerve test) might be useful to diagnosis the probelm if possible.. information such as were the nerve is being irritated could lead to other treatment options. although i have not dealt with this.. it would make sense to me that radiation could cause a person to develop carpal tunnel or cubital (elbow) tunnel... there are medication such as above and also ambulatory surgical procedures available for patients who are interested.

just wanted to be the one to share some information for a change! seems like the symptoms may be temporary post treatment.. but if they are not..there are options =)

luv4lacrosse's picture
luv4lacrosse
Posts: 1385
Joined: Jul 2010

I think my bout with L'Hermettes started today. I was walking, looked down and felt a big time tingle or shock go all the way to my feet. It about buckled me at the knees.

Sounds like from all of these posts it will eventually go away??

Mike

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

You got it Mike. Strange isn't it?

luv4lacrosse's picture
luv4lacrosse
Posts: 1385
Joined: Jul 2010

As I write this, I now do not have the shock effect when I lower my head. My neck had allot of fluid in it earlier today, I wonder if this has anything to do with it?

Mike

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Mike, most everyone here that has had it usually goes away or significantly deminishes within 9 - 14 months...

Best,
John

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