hello, my brother had surgery to remove tonsil and throat dissection to remove lymph nodes to one side,including up neck near to ear...chemo + radio therapy, completed June, 2004... now side of neck is very hard to touch and very stiff...anyone have this experience and any ideas to alleviate pain,etc?? thank you

Hi! Lots & lots of physical therapy, massage, workout & stretching. Find a good physical therapist who has dealt with this type of "injury" before or who will go the extra mile to find out what needs to be done & then work real hard for your brother. I still have to stretch my own neck out daily, sometimes throughout the day several times, but it does loosen up & not feel so tight. All that scar tissue will loosen up with time & work. Tell him to get with a PT & work real hard & he will see results. Erik

My neck is also stiff and my treatment ended in July of 2003. I am quite sure this is something that will be a life long side effect. Like Erik said, PT can help but between the surgery and the radiation our necks will never be or feel the same. I was very upset about it after surgery and for a few months after radiation ended but now I have adjusted to it and just deal with it. I get neck spasms if my neck gets to cold and by the end of a physically busy day, my neck hurts. I cannot turn my head as far to the right as I can to the left and to look straight up I have to pull my shoulders back. Part of life now!
Minnie

Erik and Minnie, many thanks for getting back so quickly...I have downloaded your replies and will show him.
Another question... do either of you (or anybody else reading this) get large mood swings?...my brother gets into very deep mood swings and causes argument and seems to have become quite intolerant of peoples comments and opinions ... maybe its just him? This is causing me and the rest of the familly much concern!....

Hello paolopp,

I had all of the above after my radical neck dissection and radiation. Stretching and physiotherapy is essential for the neck stiffness.

Mood swings seem to be common after treatment ends. I had the same, banged lots of cupboard doors etc, until my gp prescribed a mild anti-depressant. Sadly, the mood swings hurt our closest supporters, so chemical intervention is welcome.

Your brother is fortunate to have such a caring family.

Love from Helen

Hi Paolopp,
I have two neck dissections and scads of PT. The degree to which he will be restricted will depend somewhat on what the surgeon had to cut and how good he was. I still have stretching problems with the right side of my neck 8 years later but have no problems with the left side 4 years later. Without a PT I would be a mess. Get to a good PT who should be able to help you with this. While they may not be able to get him full range of motion, they should be able to get him mostly pain free.

Take care,
Eileen

Eileen and Aussie, thank you...much appreciated,and wish you all a Happy Easter, paul

sorry Aussie, meant to say Helen (from down under I guess?)...

hi all, just now found forum ''Coping/Anger and fear''...so my bro's mood symptoms are understandable and ''normal'', unfortunately but does explain behaviour!!...
I speak with some understanding of the mental state, as I underwent cancer surgery and treatment also, in 1987...but fortunately it was all less traumatic than throat/neck intervention...and maybe I've forgotten all the heartaches, except when I go for my now 2 yearly checkups, next in 2007...thanks for your comments ...

paolopp, my experience was similar to those above. My neck dissection was on the right side and I do stretching exercises to loosen it up during the day. Still have pain in the shoulder, but not too bad, no drugs taken, not even Tylenol. Physical therapy got me started on the right track.

I have found my temper is a little shorter than it used to be and I am not as "diplomatic" as I used to be. If I don't agree with something, I will generally express myself whereas I used to just let things go. That may be part of your brothers issue. And I don't think it is just him. I have been trying to clarify this, but have had difficulty expressing it. But I know what your brother feels and suspect it is similar to my feelings, and maybe others on this site feel similarly. Good luck.

hi Kirk, we have all now become more understanding of my brother's attitude, since I read about your feelings and those of others on this website..and explained to familly and friends...wish you all the best,and hope you had a wonderful Easter...thank you, paul

Paul, The stretching he can do himself but remind him to be very gentle! If I go at it too hard spasms are the result. Let him know it can get better, Like Minnie I had limited range of motion, now I am much better. It does take time though.

thanks Mark... I'm overwhelmed by the comments advice and help given by everyone...cant emphasise enough how useful this is!!..

Hey all, thought I would chime in.
I did not have a full neck disection. I finished treatment in 2/04. My neck is still spasing and gets sore. My scar hurts a little, pretty much all the time. My neck seems to be getting fuller if you will. No lumps or bumps but the scar seems to have a little hill around it with a somewhat harder ledge. Scans and exams have yeilded little but laughter from my medical staff at UCH.
They are real belivers that this is gone for good as am I.

By anyway, it is an injury and will bother us for the rest of our long lives.

Take it easy.
Rob

hi Rob, you very lucky to have been able to make some folk smile...best way, well done and good luck

You are welcome Paul, any time. Feel free to ask questions here anytime. There is always someone who has an opinion here.

Hey paolopp, I had my neck dissection last June and I'm still adjusting to it. I found physical therapy a major help. I stopped going a few months ago and really need to get back into it. It's my shoulder more than my neck that bothers me now -- it's sore and stiff, and I still don't have very good range of motion...

Interesting comments about your brother's mood swings. I've been pretty "angry at the world" of late and have really wondered why. I've never really felt like this before, and have also been "intolerent of other people's comments and opinions." Unfortunately, I have a boss now who has plenty and usually delivers them in a negative way. I've been close to "going off" on him a few times. In a strange way, I thank you for reminding me that maybe I've got some issues with own cancer experience that I need to deal with... May we both find some peace and rest in the midst of all of this... God be with you and your brother...

hello Az, so glad that we may have helped each other out with observation and comments/experience...everyone's comments have definitely helped my brother in such a short time,I guess knowing that others are experiencing your symptoms (which can be overcome) puts the mind at rest...take care and thank you

Hi, Paolopp
This has been a good thread, as I am concerned about my husband's neck, too. His surgery (both sides of the neck) was 12/04; radition was finished the end of Oct. His jaw line and neck are so hard it is difficult to even kiss him there. One of the volunteers at the cancer center provided him with an exercise video that carries him through gentle stretches, etc. He is doing them faithfully since the doc cleared him to begin and at yesterday's check-up, both the volunteer (10 yr survivor) and the doc were pleased with his range of motion. It is still very limited, but coming along.
Hope things improve for your brother. I can't get Tom to take anti-depressants, and while he sometimes keeps his frustrations from causing anger flare-ups, he can't seem to keep them from causing the easy tears.
All the best!
Nicki

hi Nicki, must admit I didn't expect such a lot of input about the mental anguish, that is obviously as strong/important as the physical pain.Tears I think are good inhelping to release the build up of frustration, last weekend was particularly bad for my brother and he lost it in a big way,and I've never seen him cry such a lot and so,so deeply! However, we all held together and the next morning he was/is better than ever.His wife and children and my mother were so pleased. He even went to see my niece and her boyfriend to apologise for his harsh words to them both, shouting that started from some obscure trivial words! All in all it turned out ok!
Seems strange yet comforting that we can all share, even though thousands of miles separate us all, and even an ocean! ...thanks, paul

meant to add an observation, that it seems that all the throat dissections on here are on the right side, as with my brother, to remove the lymph nodes?? even though his left side was opened up to check those nodes, which were ok...might be an interesting question to put to your surgeon's?....

Hello,its been a little while since I asked some questions, I trust your all doing well...my brother is coping quite well but he seems now to drink (alcohol + beer) a little in excess...he was never a big drinker but now sometimes drinks more than he ever used to?...has anyone noticed this effect?...maybe the mouth sensors are aided by the alcohol? his taste is about 80% back...any thoughts welcome...

Paolopp,

I haven't found my mouth sensors aided at all by alcohol. For a long time after my treatment ended, I couldn't stand even a sip of anything alcoholic. Gradually I found that I could drink moderate amounts of wine (and enjoy the taste again) -- never did like beer anyway, so that hasn't changed. On a couple of occasions over the years I've tried a taste of some form of hard liquor and find that it still burns so much that I can't stand it and don't try anymore.

Cathy

hi Cathy, thanks for getting back so quickly...glad you and he still enjoy the wine...maybe I'm just being too critical at this stage, just one year since completion of treatment ? maybe he is just experimenting to revitalise the taste buds...well the march continues...

Actually, after about the first month after radiation, beer and white wine went down easier than soda. I let to let soda go flat before I could drink it. I've also never been a soda drinker anyway. If it's not alcohol, it's coffee. Took almost 3 years before I could drink most red wines. If he is not doing it because he is depressed and he's not over doing it. it may be ok.

Eileen

hi Eileen, sometimes I think he's overdoing it, maybe making up for lost time? or opportunities?...very glad your doing good