Hi all,
It was some time back when there was discussion about a tingling feeling/sensation which occurred after radiotherapy. I have such a thing, it happened about 2 to 3 months post radio. When I look down towards my feet everything tingles and "pulls" down to my toes, and also along my arms to my finger tips. I thought it may have been due to the radical neck dissection, but after thinking about what was discussed a while back, does this affliction have a name? Is it unusual? It's rather awkward to describe to an outsider. A by-product of radio, as was suggested?
Cheers!
Tizz
Yes, Tizz, it is a temporary condition that results from rad for a small percentage of patients. It has a French name, which I cannot spell, and will gradually go away. In my case, it slowly reduced in strength, and eventually disappeared completely. I would estimate this occurred over a period of about six months, although for the last few months it was very mild. Annoying as it may be, it is absolutely nothing to worry about. There is no cure but time (and not looking down). You will be fine. Just another side effect, but this one is not permanent.
Hey thanks for posting. I get that when I am driving in my car and I look down at my feet. I thought the worst of course.
Thanks for the info.
Robert
It is known as L'Hermittes sign or syndrome. I had the medical oncologist saying it was the radiation and the radiation oncologist saying it was the chemo. It was first identified with MS patients. Here is a link that shows a connection to Cisplatin:
http://www.medsafe.govt.nz/Profs/Datasheet/p/PlatinolAqinj.htm Sometimes I have to look down while walking down stairs to intensify the effect. It still makes me grin almost a year later but much more since Sabrina's "big dance"
.
Ed
Hi again,
Thanks for that. I thought it may have been associated with my herniated lumbar discs, or my Scheurman's disease. I had a rad neck dissection and radio only.
Found this:
"Six weeks to 3 months after radiation therapy, patients may note an electric-shock sensation in the lower extremities on flexion of the neck. This so-called Lhermitte's syndrome is related to transient demyelinization of the cervical spinal cord." Apparently it can last for 6 months, and gradually goes away.
Cheers!
Tizz
Tizz,
It was certainly a "what the hell do I have wrong now" moment when L'Hermitte's Syndrome arrived a few weeks back. My doctor did confirm it was that. Surprisingly, i notice soaking in baths helps it a lot. I had to do that for another issue, but it's knocking out to birds with one stone.
I also noticed the days I sit in the car for extended periods of time, and days that I am extremely stressed, my neck/shoulders tense up and that feeling gets worse. The muscle relaxers (Flexerol or Anna Trampoline - can never remember the right spelling, but that's how it sounds) help with that, too.
Glad we only have a few months with this one. It's one I'm certainly ready to pass on!
Sabrina
PS Ed - :p
I'm about 6 weeks post-radiation (second round of rad) and about the same time out from my last chemo treatment (3x cisplatin). About a week ago, I noticed the tingly feeling in my underarms and along my upper back. Is this the same thing, do you think, as what others here are describing?
I thought at first that I was having a weird reaction to my deodorant. Then I stopped using that kind and it has persisted. Honestly, it feels like the tingly/aches I get when a cold is coming on, and I keep waiting for the cold to hit, but it never does.
It's confined to my upper back and underarms areas. It's just a strange sensation and hard to explain. Of course, I keep panicking wondering what the heck this might be after all I've been through... I started a new job and haven't been sleeping all that well so I wondered if maybe I was just exhausted too.
Hi Az,
I'm 7 months post-radio, and have had these tingles for a few months now. When I look downwards the electric tingles go from the back of my neck all the way to the soles of my feet. A weird feeling and I sort of enjoy it
, though sometimes it can be a bit sudden and I jump! My poor physiotherapist doesn't know what to do with me - don't think he's had an oral cancer person before, with half a neck! He tried some acupunctre but that hasn't made much difference.
Cheers!
Tizz
Erik,
I hope the new job is going great!
Many people have described what you are experiencing as after effects from the neck dissection. I did not have any surgery and I experienced something that felt like hair or spider webs across my back and down my left side. I had more radiation to the left side.
What Tizz describes is L'Hermittes sign or syndrome that is a side effect of both radiation and Cisplatin. It was first discovered with MS patients.
Has the adoption gone through and have you settled in some new digs?
Ed