Hi,
I am writing for my sister Marcy who doesn't have a computer at home. She has tongue cancer that metastasized to the right side of her neck.
Three weeks ago she had a radical neck dissection, this was following seven weeks of radiation and 2 weeks of chemo. Since surgery she has had almost non stop pain in the lower back of her head, and extreme facial swelling.
She asked that I write a post to see if anyone else has had these symptoms after surgery. She is going back to see her surgeon again tomorrow.
Thanks so much for your help.
Michelle

Marcy/Michelle

The swelling and pain are pretty much normal after the surgery, at least from my experience. Swelling because the lymphatic channels have been removed along with the lymph nodes, and the lymphatic fluid doesn't have anywhere to drain to. So it just kind of collects in the side of the face, below the jaw etc for a while until the fluid finds new routes out of the area. I think the term is lymphedema, (not sure of spelling). Check some of the older threads, we've all been through it and there's some massage techniques that will help. My last surgery was in April, and I've still got some sweling in the jaw area.

As far as the pain, probably right side back of the head just behind the ear, going to area just below the ear. That's from the surgery also, again from my experience pretty normal post surgery trauma recovery. Don't know if you're squeamish or not so I won't describe why. Seemed like it was about 6 weeks for the pain to go away, but it does.

All pretty normal post surgery recovery, but still good idea to check with the surgeon to make sure nothing's amiss.

Bob S.

Bob,
Thank you for writing back. I read your note to Marcy today. I believe she felt better after hearing from someone who had been there and had the same symptoms that she did. She went to see her surgeon today and he said her muscles were like knots, he did send her to physical therapy. She is going to start therapy ASAP. They also gave her stronger pain medicine, and something to calm her down.. Hopefully that will help.
Thanks again,
Michelle

Your'e very welcome. I"m curiouse as to what kind of physical therapy they give Marcy, as the side that had the most recent surgery/radiation is similar, hard as a rock at the moment. Mention it to the ENT, he just comments that it's the "nasty radiation Dr. So and So does) and they dont' offer any suggestion on what to do except deal with it.

So I go once a week for facial massage and facial (guy's style, also helps with the scars), it seems to help. Welcome any other suggestions.

Bob

I strongly recommend PT. My neck too was hard as a rock with fluid from radiation. What do they do? First you get to lie in cozy warm heating pads for about 10-15 minutes which make you feel wonderful. Then they massage the neck up and down and side to side. I don't know the names of the specific moves he did. There were also moves to improve my neck rotation from side to side and up and down. He also did intra and extra oral massage to help with the minor trismus I had and lack of saliva. I also had a winged scapula which he treated. And my PT ended every session with a minor back massage. All very worthwhile and covered by insurance. Tell your ENT to give you a script, he is not paying for it, why should he care. And go find yourself a PT who specializes in head and neck problems.

Take care,
Eileen

Eileen,
Thanks for your reply.
Bob I am still waiting for Marcy to get to her first treatment. I will also share with you her experience.

Michelle

Hi bob,
I wanted to get back to you after talking with Marcy about her PT treatments.
She told me once again she is going to be a case study. There are going to be 4 different therapists working on her. They cannot believe how tight and hard all of her muscles are.
They told her she should have come in sooner after surgery, funny how nobody tells you that.
I saw her Sunday and it brought tears to my eyes to see how swollen her face had got and how she couldn't hold her head all the way up. The therapists are going to work on loosening up her muscles, trying to get her to turn her head the opposite side that surgery was done. They are also going to have a therapist working on the lymph drainage. I've read on the internet that Manual Lymph Drainage therapy and Complete Decongestive Physiotherapy is the only effective treatment for lymphedema. They are going to be doing that for Marcy. She is going to start with 2 days a week and then work up to 3 days a week.
I pray this will help her headaches. She had a hard time not crying today when we talked, it is all so hard. Well thanks for listening and maybe you could ask a therapist about the above treatments I mentioned.
Take Care,
Michelle

Michelle,

I don't want to alarm you, but I just wanted to inject a word of caution. It is good that the therapists are going to work on Marcy's tight muscles and lymph drainage. I just wanted to be sure that someone has addressed the issue of a possible metastasis beyond the neck area. My daughter Heather had a metastasis to the spine and she also had extreme swelling and pain in her face and the nape of her neck, which radiated across her shoulders and down her arm. It was part pain and part numbness. If Marcy's is all pain, it probably is just the muscles. But just be aware that there could be more going on. Heather's doctors kept saying that the pain and swelling were just the normal side effects from surgery and radiation, but of course that wasn't the case. Again, Marcy's is probably just tight muscles and lymph fluid, but please make sure the doctors stay on top of this. If they haven't done an MRI on the spine, perhaps they should.

Rainbows & hugs,
Rosie