Has anyone experienced pain and stiffness in shoulders after bilateral neck dissection? My husband's surgery was nine weeks ago. He has had severe neck tightness (like a noose or tight collar) and shoulder pain which is worse on the left side. He does physical therapy for range of motion in his shoulders. About a week ago the pain in the left shoulder/arm became significantly worse. The family doctor gave him a shot of cortisone & Novocaine, but that didn't help at all. Any thoughts?

Thanks,

Angel

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello Angel

Have a read through these past posts on neck tightness and massage and Bio-Oil helpful. You will find helpful advice there.

Hope that helps.

Best wishes
Vinod

Hi Angel,
My husband had the same thing nearly 12months ago now. He has only just found the tightness and pain a little easier now, it has taken sometime to get to this point. He stopped going to a physio as it was only making it worse especially the pain. Now that it is getting a little less tight and not so painful he is going to start doing laps in our local heated pool to slowly rebuild his neck and shoulder to be a little stronger. Be patient and if anything irritates it more stop doing whatever it is your doing at the time, it was a hard lesson to learn for Darrel but he is so much better. Tried hitting a golf ball recently but no good at all, but maybe in time!!! Now and then he will say that he is very tight and sore again so he takes some of his pain killers and rests for the day which seems to improve the problem. But as I said it really is time that heals, nine weeks is a very short time.
Good Luck,
Tracey

hello angel
i am 3 weeks post op for neck dissection and the rightness is terrifying it feels so clostrophobic i dont know what to do for the best i was discharged from hospital a week ago and the feeling was not as bad then but the last couple of days have been hell iwent back to the ward yesterday byt they said as long as i could breath ok any suggestions bevx

Hi Bev. I showed your post to my husband and we wanted to be sure to get back to you. What you describe is exactly what he went through and continues to experience, except now he has some coping skills. We found out about Bio-Oil from others on health boards. It wasn't hard to find. I picked it up at Walgreen’s. I apply it onto his neck two-three times daily. Give it time. Many have claimed it helps by making the skin softer and suppler. An extra benefit, it helps diminish scarring. Also, he takes Ativan, an anxiety medication. It helps in two ways. It obviously helps with the anxiety caused by the severe neck tightness and the doctor said it is a muscle relaxant. He is also on a narcotic drug. It is taken as needed and he keeps it to a minimum, but it definitely helps him sleep at night. A Fentynol patch for pain helps too. Of course these medications do cause drowsiness throughout the day. After all this, the only other advice is to give it time. I assume each individual heals differently. I've heard anywhere from a few months to a couple years before the tightness eases and some say it never totally goes away. Please ask your doctor for help. We went back to the surgeon and he was of no help, but the oncologist was helpful. I don't know if you also had radiation treatments, but we were told that radiation combined with the neck dissection, which both produce scar tissue, is what causes the tightness. My husband says the intensity varies throughout the day. The heat definitely brings on the tightness. So when the temperature is hot and humid, he is better off avoiding it by staying inside with the air on. Keep searching the boards for other people’s advice. Also check www.cancercompass.com boards. Good luck to you Bev and write back with any other questions.

Angel & Hubby

thanks angel and hubby
the tightness is still as bad today but maybe i am expecting too much after just 3 weeks i had 32 nodes removed and floor of mouth cancer removed i will not require radiation which i am most thankful but i am realy scared of being sick and choking to death it is a horrible feeling i have just started with the bio oil so hopefully the tightness will decrease with time

I know exactly how you feel. Your feelings mirror my husband's feelings. I made sure to ask every Dr. he saw in those first few weeks about the tightness cutting off his air supply. It was a huge fear/concern or his. I wanted to make sure he was reassured by the docs. Eventually, that concern wasn't as great. The tightness though goes on. If you aren't on anything for pain/anxiety, you may want to talk to you doc about it. My husband is on a very low dose of med for anxiety, but it helps. Now at least he can spend the entire night in bed. The first few weeks he'd be up half the night in a chair in the living room. I hope things get better for the both of you. I found a new website today: www.oralcancerfoundation.org if you want to give it a try. They have boards where you can ask/answer questions. In the meantime, I hope you have a care giver and don't have to go through this alone. Try to keep your spirits up. Find something that makes you happy and do it.

Angel

thanks angel
does your husband still suffer with the tightness now and how long ago was his surgery i know it is early days for me yet but it seems quite a common probleb it seems the more i speak the tighter it becomes strange really yes i have wonderful husband two daughters amum who are all my carers i could not have gone through all this without them it has been difficult for them also i have a brother who lives in usa south carolina he is a dog groomer

Hi Bev. Nice to hear from you again. In answer to your questions, yes, he still suffers from neck tightness in varying degrees throughout the day. He is 9+ weeks from surgery (June 19, 2007). Sometimes it reaches a peak and he has no option but to take medication. Are you on any medication? He is on Roxicet (a narcotic pain killer solution-liquid) and Ativan (anti-anxiety).

I am very happy to hear you have support at home.

I noticed you are from North Wales. I told my hubby this, adding that this site is from Britain. We are in the states, a suburb of Philadelphia, Pennsylvania. In our area many surrounding towns have Brittish names. We have a North Wales not too far from here along with New Britain, Horsham, Warrington, Buckingham & Warminster, to name just a few!

Hi,

My Dad (age 70) had a bilateral ND on March 13 of this year. (He had chemo/rad last year finished June 2006).

Your story is much like his. He's now 5 months post surgery. Things are still tight (not as bad as it was) it does drive him crazy; he is learning to deal with it better now.

He can turn his neck pretty good. With is arms to the side; he can lift them forward about shoulder high. He can only lift them sideways about 12 inches (this has improved). It seems to hurt when he tries to force his arms any higher. He does some stretching exercises the physio therapist showed him. He doesn't take any pain meds (they mess with his mind) and he's not in any pain he says. No anxiety meds either (although I do think anxiety meds are a good idea, espeically in the first few months post op).

He too says it feels like a rope is around his neck and at times it feels like it's being pulled tighter. From all my chit chat on these forums, it just seems that this is 'normal' for this type of surgery (something the dr's didn't tell us beforehand).

For the first couple of months we were back and forth the the surgoens office and had some ER trips as well; for swelling and the scary sensation of not being able to breath. He took a couple rounds of steriods on and off for swelling and keeps a bottle at home for security (the surgeon does not like steriod use). This surgery has given him so much anxiety.

In the hosptial he swelled so much and was rushed back into the OR and back to ICU intubated. So what was suppose to be a 3-5 day hospital stay for the surgery turned into a 10 day nightmare. So on top of all the tighness in the neck; he has that experience in his mind.

He was also only sleeping a few hours a night and sitting up in a chair mostly. He sleeps propted up in bed to avoid swelling. He just now started to sleep on his side. In the mornings the swelling is up abit.

We were initially massaging the scar (regular massaging) to help with tightness. Although this feels nice; it wasn't helping with this sleep or anything else. With the dr's approval; back in July he started having lymphatic drainage massages. Since having these massages things have improved alot! He sleeps good now. The swelling is under control. He's more relaxed overall. Ask about this type of massage and make sure the person is experienced in MLD. They showed us how to do it at home and it's amazing how somedays his neck feels so hard and after we massage it; it really softens up. It's just light circular motions moving the lymph fluid downward.

We learnt about Bio Oil here by Susie and ordered in online (don't sell in Canada) and the oil seems to help.

My Dad is now back to eaing well; even dining out and driving a car. He looks good he feels better. He has good days and days where things feel tighter; the difference is now he's learning to deal with it and he can still eat (for a while there he wasn't eating when things got tight). So stay positive!

The dr's say it can take (well they change this every time we see them) 6 months to a year; now they say 1 1/2 years.

Something new he's experiencing; his ears were numb and now they tingle all the time and it drives him nuts. The dr's say it's the nerve endings repairing.

When in doubt just go back to the hospital; even if just for peace of mind.

Hope this helps and if you have any questons please ask.
Take care,
LisaB

This message has been edited. Last edited by: LisaB Canada,

Thanks so much for the reply LisaB. I appreciate your taking the time. I do have a question about the massage. Someone on another board also suggested this type of massage. I read both your replies today. She called it barnes myofacial massage. My husband at this point has a group of doctors that are still following up with him. The oncologist, the radiation dr. and the surgeon. Of course we also have a family dr. Who should we ask about the massage? The surgeon I can tell you has been no help with any side effects. He knows how to cut and that's it. He just comes out and tells you he doesn't know how to help you with your pain, discomfort or any problems caused by surgery. I think it's ridiculous. How can a dr. do this type of surgery on a very regular basis, which he does, and not know how to help the patient afterwards? Not only that, but while my husband was in the hospital only a few days post-surgery, as he explained about the extreme tightness of the neck, the surgeon told him this was not a major complaint from his patients! After talking with people and reading people's situations on many different boards, I couldn't believe he said that! In my opinion, he is not responsive to his patients and probably doesn't listen. He is an excellent surgeon, I don't want to take away from that, but his bedside manner is not good. He doesn't relate to people on a human level. Everything is by the book with him. Getting information from him is like pulling teeth! Anyway, sorry to go on so, I'm venting. If you have any suggestions on who to ask about massage, that would be great. The physical therapists didn't seem to deal with this specific surgery, only the general after effects.

I'm sorry your Dad is going through this. I hope he is improving even more as time passes. One more quick question if you don't mind. I don't recall you mentioning a feeding tube. Did your Dad have one? If so, for how long? My husband is doing better with eating, but it is still very slow going.

Thank you so much for your time and caring!

Hi

Our surgeon is also a brilliant yet offers up very little info on how to handle the tightness. Makes ya mad! As long as your oncologist and surgeon say there is no reason why he can't have a massage then I would do some reseach on therapist in your area. We looked up lymphatic drainage massage organizations online and found a bunch.

We asked the surgeon about massaging and he just said we could push the face downward to get the lymph fluid moving. Then we learnt about MLD thru reading online and when asked the surgeon said that's fine (he didn't say much else).

We talked to a dr at the rad dr's clinic (another surgeon) and he seemed to think MLD was a good massage. He showed us regular massaging on the scar to loosen up the scar tissue. No one had any names or places to use.

We did some research and found a good MLD therapist in our area. She told us to only do the MLD massage and not any of the techniques the surgeons showed us.

All I can say is that right from the very first massage my Dad has been sleeping good.

He was having one 2 times a week plus we do them at home 2 to 3 times a day. This week he stopped the therapst.

Some say you should not massage if you have cancer because it can spread it. Others say this is not true at all. The American Cancer Society has info on their site.

My Dad's nodes came back negative.

Yes he had a peg. Remember his treatment finsihed last year June 2006. So he got it out last Oct. He stopped using it last year in July. He did pretty good on his eating after treatment. As for the surgery his eating started out ok then he was eating very little; now he's back to eating good. It takes time. Try ensure or V8's if he can't eat much.

(He originally declined the ND surgery. The dr wanted him to have it because the nodes only shrunk 50%. So after some unnessary anxiety regarding a scan scare; he decided to have it done.)

He's cancer free and that's great! This surgery is not easy to go thru as you know and the dr's sure downplayed everything.

I have not heard of that type of massage you mention.

If I can be of any help let me know. We know how you feel.

Thanks; yes he has improved alot.
Lisa

This message has been edited. Last edited by: LisaB Canada,

Hi again,

I want to add to my comment. If the surgeon and the oncologist say he's ok for massaging now and they can't give you any names or clinics then try this:

Call your cancer centre and ask if they have a massage clinic. Ours did only for breast patients. They gave me a list of massage therapist that matched the list I had already found online (so that made me even more comfortable choosing one). (If you are going with manual lymphatic drainage massaging; find a therapist that is trained in MLD and or CDT. I learnt that thru the OCF forum).

Here's a few links you might want to check out.
http://www.vodderschool.com/
http://www.lymphnet.org/resourceGuide/manualDrainage.htm

Also I would Google in the 'type of massage' you are interested in and look for organizations that cover that.

Hope this helps. You are right about heat adding too the swelling. Find your trigers and avoid them. This all takes time. We really feel the MLD has helped. Do some research and do what you are comfortable with. We got the ok from both our dr's (surgeon and RO) to do MLD so we are comfortable with this. It's just light massaging (more like stretching the skin) easy to do at home.

As to venting.......oh boy we hear ya!! I could sit and type a page or two full of vents. Sometimes it just feels good to get it out!

Take care,
LisaB

hello
my gp sent me to a and e regarding severe neck tightness they called the max fax reg to see me he said i was suffering severe anxiety as if it was all in the mind but believe you me it was a very real feeling . the tightness is better some days more than others i have been to the local hospice today for some complementary therapies i feel much more relaxed and not so panic stricken i know it takes time after major surgery but all we want is reassurance from our surgeons that it will pass after time

Good luck getting reassurance from your surgeon! If he is anything like my husband's surgeon. I am grateful he is such a skilled surgeon. I am very grateful, but why doesn't he have answers to the effects that happen after surgery? Only he does is say the scar sight looks like it is healing nicely. Heck, I don't need him to tell me that! I can see that with my own two eyes. I need him to take his knowledge and a little time to research the effects neck dissection has on his many patients so than can better cope with the aftermath. When I asked him prior to surgery what side effects he would suffer from the removal of the lymph nodes, he told me none. He was wrong. My poor husband is in REAL PAIN. Do I blame the surgeon for this? Of course not. That would be absurd. Like I said, I am grateful to him for his skills and knowledge. I just can't comprehend why the knowledge doesn't go further than the skill to perform surgery. Then, after not getting answers from the doctor who you thought would have the answers, you ask other doctors. Well, this isn't their field. They can only theorize. Anyway, the family doctor suggested more physical therapy for my husband's left shoulder. The therapist thinks it is tendonitis of the rotator cuff. I think that's right. He used an ultrasound therapy. At home he'll do exercise followed by ice. He'll go back next week. I hope he gets real relief very soon. Also, dr. prescribed muscle relaxant. He'll try them tonight. They are supposed to make you sleepy. We'll see if they help and if they are tolerable.