Hi everyone. My husband was diagnosed with squamous cell carcinoma at the base of tongue, stage 4 in late 01/07. He went through 4 chemo treatments (cisplatyn)& 40 radiation treatments. It had spread to the lymph nodes on both sides of the neck. He had a bilateral neck dissection on 06/19/07. It has been a couple months since the surgery. No real improvement. Still much soreness in shoulders, upper arms, neck. Still depends on feeding tube daily, although he does eat some by mouth every day, it isn't enough to sustain himself. His weight is still down (he lost about 25 lbs.). Any help concerning extreme tightness (like a noose or tight collar) around neck would be apprediated. He is still on meds for pain/anxiety. The pain in the left shoulder/upper arm has become worse in the past week. Maybe he strained it lifting something? We aren't sure. The Dr. gave him a shot in his shoulder. No help at all. Any thoughts?
Thanks,
Sweetieswife
Hi Wife! Welcome to OCF...you'll find many answers and much comfort here...
Sorry I can't advise you in this situation, but I'm sure you'll get many responses from those with similiar experiences.
Keep us posted on your hubby's progress; My sweetie had bi ND on 07/19, so maybe we'll learn something from you two!
Maybe some answers or at least some reassurance for you. I had modified neck dissection on just one side, and five years later, I still get a tightnesss, most frequently when I am tired after a long, active day. I have become so used to it that it no longer bothers me, although I can remember when I was just out of treatment and it did feel like a noose. I suspect there is still some swelling that is making your husband feel worse than he will eventually.
I was sent to see a physical therapist after my ND, and although I turned out not to need more than a few exercises done with a very large rubber band, I think that might be exactly what your husband needs to help with his pain. I would suggest that you run this by his doc for a referral. It might help a lot!
Hello.
I think maybe you should try to speak with Eileen E Jumikis, she is a member here. She helped me alot in the beginning when we thought mom might be going that route. I'll try to find that address for you.
Good Luck.
Hi,
I'm here as I am most days. I'd definitely get him to a Physical Therapist to help with the lymph drainage in the neck and to regain strength in arm and shoulder. You didn't say where the pain is, but this might help that also. Umlike Joanna, I went to PT 3 or 3 times a week for several months after both my neck dissections. I also go back once in a while for a tune up. I have the large rubber band, called a theraband, that I use at home while I watch TV.
As to eating, I never had a peg and found breakfast type foods, soups, aapplesauce etc. the easiest the first few weeks after radiation. He needs to keep swallowing so if he can drink his supplements rather than using the peg, it would be better.
Take care,
Eileen
Hi
I had a lot of pain and stiffness in my neck following radiation, however I never had disection. It took me a couple of months with a good Physical Therapist to get some relief and not having any problems with it now. It is great that your husband is still able to swallow, he needs to do as much of it as he can. It is very hard to get back if you get where you are unable to.
One thing I would advise you to watch out for is Trismus (Lockjaw), as it can occur up to 12 months post radiation and you get much better results if you address the issue early. If you want to know more about it go to Google and search "trismus". I belive the first site that comes ups is titled "What is Trismus" and it explains what it is and what to look for and ways to treat.
Good Luck
Steve
Thank you everyone for taking the time to respond. Any advice is helpful. If anyone has questions regarding peg tube, radiation, chemo, neck dissection, I'd be glad to share my hubby's experiences and hope they are of some help. If anyone comes up with a reason for extreme soreness in shoulder/upper arm after neck dissection, worsened over weeks, please let me know. All is appreciated!
Sweetieswife
In my experience the soreness of the shoulder after neck dissection is because they dug through the trapezius muscles looking for nodes. Two months post surgery, my trap is still in spasm, but I have gotten good relief from physical therapy with ongoing home based exercises to relieve the pain. General strengthening exercises of the shoulder and arms have also helped greatly.
Best wishes,
Bonnie Glen
Dear SW, specifically ask the surgeon to diagram for you how the surgery was done. That way, you all have a real picture of what muscles , nerves, etc. have been affected. With that info, you can more intelligently persue good physical therapy. The more you know, the better advocate you can be. Amy in the Ozarks
Thank you all for the advice. As far as physical therapy, after the third visit they said he could simply continue the exercises at home. Does he need to spend more time doing these exercises perhaps? They gave him a large variety of exercises. He began by doing them as suggested twice daily, but when they added so many more, he now chooses some and does them once per day, about ten minutes daily. Does he need to up the time? Half hour to an hour to get results or is that too much to ask? He feels pain/discomfort most of the time and while doing the exercise.
Thanks,
Sweetieswife
SW, I would think he needs to be reevaluated by a PT, given the pain the excercises cause. Increasing the frequency won't do any good if it causes pain. Just my take on the situation.