Dealing with this since November

dogsrule
dogsrule Member Posts: 96
edited March 2014 in Head and Neck Cancer #1
I am a 50 year old female who was diagnosed with scc-unknown primary. Found a lump on my left side of neck. Primary doc first thought lymphoma. Refered to hemotolagist. Ruled out after cat scan, Refered to surgeon to have lumps taken out.Needle biopsy came back with results of scc. After scope, diagnosed unknown primary, Biopsy under anesthia came back negative. Modified neck dissection with 2 lymph nodes involved.He removed around 13 lymph nodes and muscle. All came bach negative. Doc said stage 11 Started radiation Jan 2010.Ended beginning of Feb. 2 rounds of Erbutux, no other chemo. Loss of salvia,some taste for a litle while, seems to be better, and trouble swallowing.Just started experiencing these electric shocks.Will this get better over Time? Had a barium swallow on Thrusday. Doc said moderate narrowing. Will this get better over Time?
I have been following all of your posts and they have been so informative and helpful to me. I pray for all of you and it helps to not feel so alone. Thank God for all of your caring support of one another and I hope that I to can help anyone with these stuggles we are experiencing.

Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #2
    Nerve endings
    Dogsrule,

    You mentioned that you had a modified neck dissection, with roughly 13 lymphnodes removed with a muscle. Was the muscle the SCM muscle, if it was, do you experience some weakness on the side that you had the disection? I ask only to say that I had a radical neck disection with 30 plus lymphnodes removed.

    I did have the little electrical tingling that you mentioned. I was told that it was the nerve endings trying to heal up. I had it on and off for maybe 8 months or so. It was in the first year after surgery and treatments. I don't have that feeling anymore.

    A few months after radiation treatments, I started to have some tighting and swelling of my face and neck. I asked my Radiation Oncolgist about it and he said I was experiencing Lymphodema. He then sent me to a Cancer Physical Therapist and in a few weeks, she taught me the easy exercises and gentle massage that we can do almost anywhere to help us get back to normal.

    My Best to You and Everyone Here
  • delnative
    delnative Member Posts: 450 Member
    #3
    MarineE5 said:

    Nerve endings
    Dogsrule,

    You mentioned that you had a modified neck dissection, with roughly 13 lymphnodes removed with a muscle. Was the muscle the SCM muscle, if it was, do you experience some weakness on the side that you had the disection? I ask only to say that I had a radical neck disection with 30 plus lymphnodes removed.

    I did have the little electrical tingling that you mentioned. I was told that it was the nerve endings trying to heal up. I had it on and off for maybe 8 months or so. It was in the first year after surgery and treatments. I don't have that feeling anymore.

    A few months after radiation treatments, I started to have some tighting and swelling of my face and neck. I asked my Radiation Oncolgist about it and he said I was experiencing Lymphodema. He then sent me to a Cancer Physical Therapist and in a few weeks, she taught me the easy exercises and gentle massage that we can do almost anywhere to help us get back to normal.

    My Best to You and Everyone Here

    Hey, Dogsrule
    First off, I love your "handle." Then again, I love dogs. If you haven't seen this video, check it out: http://www.dogwork.com/snow2/
    That video will brighten your day for sure.
    Now, regarding the "electric shocks" and "electrical tingling" that you and MarineE5 (semper fi, Marine) are experiencing: It's called L'hermitte's Sign. In "normal" people it can be a sign of the onset of muscular sclerosis. But people who've undergone chemo and/or rads, it's a common after-effect of treatment. Google it and you'll find plenty of information.
    Does it happen when you touch your chin to your chest? (He asked, touching his chin to his chest and getting a mild shock.) If so, that's a dead giveaway.
    I'm not sure how long it lasts. I'm almost 18 months out of treatment and it's really fading away. At this rate, I'd give it a few months and it'll be gone.

    --Jim in Delaware
  • Tanager75
    Tanager75 Member Posts: 89 Member
    #4
    delnative said:

    Hey, Dogsrule
    First off, I love your "handle." Then again, I love dogs. If you haven't seen this video, check it out: http://www.dogwork.com/snow2/
    That video will brighten your day for sure.
    Now, regarding the "electric shocks" and "electrical tingling" that you and MarineE5 (semper fi, Marine) are experiencing: It's called L'hermitte's Sign. In "normal" people it can be a sign of the onset of muscular sclerosis. But people who've undergone chemo and/or rads, it's a common after-effect of treatment. Google it and you'll find plenty of information.
    Does it happen when you touch your chin to your chest? (He asked, touching his chin to his chest and getting a mild shock.) If so, that's a dead giveaway.
    I'm not sure how long it lasts. I'm almost 18 months out of treatment and it's really fading away. At this rate, I'd give it a few months and it'll be gone.

    --Jim in Delaware

    Electric
    This is why I keep coming back and reading this site. I have had the shocks when I put my chin to my chest. It is a weird feeling I noticed while driving. Rather then investigate, I stopped putting my chin down (it worked). Lack of investigation is one of the reasons why I did not go to the doc until that lump would not go away, 2 months after I noticed it! Thanks for reminding me to say things out loud dogsrule.

    Peace,

    mark
  • dogsrule
    dogsrule Member Posts: 96
    #5
    MarineE5 said:

    Nerve endings
    Dogsrule,

    You mentioned that you had a modified neck dissection, with roughly 13 lymphnodes removed with a muscle. Was the muscle the SCM muscle, if it was, do you experience some weakness on the side that you had the disection? I ask only to say that I had a radical neck disection with 30 plus lymphnodes removed.

    I did have the little electrical tingling that you mentioned. I was told that it was the nerve endings trying to heal up. I had it on and off for maybe 8 months or so. It was in the first year after surgery and treatments. I don't have that feeling anymore.

    A few months after radiation treatments, I started to have some tighting and swelling of my face and neck. I asked my Radiation Oncolgist about it and he said I was experiencing Lymphodema. He then sent me to a Cancer Physical Therapist and in a few weeks, she taught me the easy exercises and gentle massage that we can do almost anywhere to help us get back to normal.

    My Best to You and Everyone Here

    nerve endings
    Hi Marine

    I am not sure what the muscle that they took a portion out was called. The doctor told me in order to do a good clean out that he would take a portion of the muscle under my jawbone out and that I would have an indentation. I am not experiencing weakness, but it feels tight and it is numb, as well as my shoulder, jaw bone and a little numbness on my ear.
    I had a physical therapist come to my house about a month after the surgery and she showed me excercices to do to keep the scar from binding. The more you do them the more limber my neck becomes. I can turn it ok, just a little tight. Thank you for posting and my best to you as well
  • dogsrule
    dogsrule Member Posts: 96
    #6
    delnative said:

    Hey, Dogsrule
    First off, I love your "handle." Then again, I love dogs. If you haven't seen this video, check it out: http://www.dogwork.com/snow2/
    That video will brighten your day for sure.
    Now, regarding the "electric shocks" and "electrical tingling" that you and MarineE5 (semper fi, Marine) are experiencing: It's called L'hermitte's Sign. In "normal" people it can be a sign of the onset of muscular sclerosis. But people who've undergone chemo and/or rads, it's a common after-effect of treatment. Google it and you'll find plenty of information.
    Does it happen when you touch your chin to your chest? (He asked, touching his chin to his chest and getting a mild shock.) If so, that's a dead giveaway.
    I'm not sure how long it lasts. I'm almost 18 months out of treatment and it's really fading away. At this rate, I'd give it a few months and it'll be gone.

    --Jim in Delaware

    shocks
    Hey delnative

    Been following you on here and you are so very helpful and informative to alot of people.
    Thanks for replying to my post. I will check out the video, I could always use a little sunshine coming my way. Before reading any of the posts on here about the shocks, I thought it was happening in my stomach and radiating up thru my body. But now that I read others posts and they say when they bend their head forward or backward they would feel the shock, so I started paying more attention to when I move my head and that is exactly when it happens. It started about a week or so ago and it seems to be getting worse. I am glad to hear that it is only temporary because it is a little freaky and I don't like this at all.

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