| | Joined: Mar 2012 Posts: 58 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2012 Posts: 58 | So - I've been getting this really strange feeling. I'm not sure if it has to do with the lymphedema or what...basically, it started just when I would put my head down but it has started happening more often. I get this feeling like a vibration through my whole body all the way down to my feet. It goes from top to bottom. I really feel it in my torso/pelvis. The only way I can explain it is if my whole body was a guitar string and you pluck it. That's how I feel on the inside. It's not painful. It just catches me off guard/puts me off kilter and feels incredibly strange. Sometimes it's very strong and sometimes not. It's unlike any thing I've ever felt in my life. Has anybody experienced this or heard of anything like this before?
MissBazinet
Female, 37 yrs old,Non-Smoker/Social Drinker, HPV-
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Fall 2014 - HBOT due to wisdom teeth extraction post radiation
| | | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | I fortunately don't have that side effect, but it does sound like Lhermitte's Syndrome (Lhermitte's Sign)to me. I'm sure there is more info on here, just can't find it at the moment. Try to search for it. I think it's spelled correctly. I know others who have it and they described it just like you did....like plucking guitar strings (sort of a vibration) when they put their chins down towards their chests. Hope you find some relief.
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Mar 2012 Posts: 58 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2012 Posts: 58 | Wow. Thank you! I'm not crazy. lol At least I can go to my doctors with this now. As of yet no one was sure but my ENT did mention that it could be due to radiation of the cervical spine. I'm so frustrated and confused. It's hard enough just trying to get back into regular life and feeling "normal" again. Sometimes I feel like this stupid cancer has robbed me of my mid to late twenties. No more being carefree for me... Seems like if it's not one thing it's another. Do you know if this is going to be a permanent thing?
MissBazinet
Female, 37 yrs old,Non-Smoker/Social Drinker, HPV-
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Fall 2014 - HBOT due to wisdom teeth extraction post radiation
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | MissBazinett
Alex had something that might be similar. About 2 months after the finish of treatment he complained that if he moved his neck quickly, he got a sort of electric shock which came out at the soles of his feet. This also happened when he stepped off the kerb. As you say, didn't hurt, just took him by surprise. Unfortunately when we mentioned this to the RO he looked at us like we had gone completely mad and offered no explanation other than to say he had never heard of such a thing (code for "don't bother me with your side effects - I saved your life didn't I?").
Like you, we were relieved to read about L'Hermitte's sign which described Alex's symptoms to a T. Sometimes it is just nice to know you are not a freak.
The good news is that it went away eventually although Alex can't remember when.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | | Joined: Mar 2012 Posts: 58 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2012 Posts: 58 | Yeah my RO nurse had no idea what I was talking about so I made an appt with my RO for next Thursday. At any rate...my ENT who did all my surgeries apparently knew exactly what was going on. Go figure. He is freaking awesome though and I love that man. lol Happy to know it goes away and is not in any way life threatening!
Thanks guys!
MissBazinet
Female, 37 yrs old,Non-Smoker/Social Drinker, HPV-
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Fall 2014 - HBOT due to wisdom teeth extraction post radiation
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I had/have the same thing - it is called l'hermetes sign or something like that - it usually goes away in 2-3 years.. It is from radiation - and not really an issue just an annoyance ocassionally - I feel it most when I walk my dog! I'm almost 14 mos out of rads, and it's almost gone at this point - do see you're dr. And look it up... To ease your mind - it is rarely - almost never permanent. As far as I recall. Good luck!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Wow, never heard of that side effect, so very interesting. Hope it clears up for you sooner rather than later!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Bizarre right.. Freaked me out at first... I think it has to do with where the rads is aimed and the surrounding structures! So I guess ulmately depend on where your cancer is/was. Hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Dec 2011 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2011 Posts: 126 | I have that too! I asked my oncologist and she had never heard of it, but I did enough web surfing to figure it out. It started for me about 4 months after radiation ended, and I still get it. I really stopped noticing it though unless I am doing physical exercise - running is the worst. Once I figured out it was nothing serious though it stopped bothering me. Hopefully you can put it to the back of your mind also! It is the least of our worries
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
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