It seems like my husband has hit most speed bumps during this mess. Here is another one. He had the neck disection three weeks ago 26 nodes. He also had his thyroid removed since after all the chemo and radiation that had pappilary cancer. In any event, he has weakness in the right shoulder and pain. He also has a drooped lower lip on the side of the disection. We were hoping it was moving along, and now today his neck is swollen and much more painful. He was given exercises to do to strengthen the arm/shoulder and to improve the mouth. Is it possible he did too much? I read about the message to bring fluid down the neck. Do you use hot or cold compresses? I need help. Please... I can't tell you how helpful this site has been during this entire ordeal.

Hi D C S:
I had that facial nerve "hit" during my surgery about a year and a half ago. It has improved, but still droops some and the muscle has deteriorated some on the side I had my surgery. I also have the soreness and pain in my shoulder and upper back. Not sure if it's all caused by the treatments or also from old age--LOL. Therapy has helped a lot though. By the way, the massage techniques the therapist gave me made a remarkable difference in my neck. It continues to improve. I still do the massage techniques frequently. Keep pushing.

Best Wishes,
Steve

I had ND on only one side, not involving the muscle. My lip drooped, and it gradually got better. I did some exercises on my own, and I have no idea whether they or time...or a combo....made the difference. Now it looks normal, and I smile normally. I encourage you to not be impatient. I am betting that you will notice gradual improvement until one day you realize that it is nearly back to normal. Unless you need to make a fish-mouth, I am betting that in time you won't notice a thing. I did some exercises by making a fish mouth and then a wide smile, and then trying to move that lip down to the side in a grimace. It still doesn't want to do that, but who cares. I don't intend to grimace much. I'd rather keep my smiling muscles in shape!! Three weeks is not a long time. Keep us posted. Be patient. But be encouraged.

I didn't get back to anyone after my post on July 17. In a matter of hours his neck became more and more painful and the swelling continued. We contacted the doctor at MD Anderson and he wanted him seen asap. We tried to decide to fly to Houston or stay in Miami. We did have the original surgery to find the primary here in Miami, and contacted a friend who called the surgeon at home. He was concerned the swelling would compromise his breathing and wanted to see him immediately. We live between his home and the hospital, so he came to our house. As soon as I saw his face I knew we were on our way to the hospital. We followed him to Sylvester in Miami and he put a drain in his scar of the thryoid incision. He ordered blood and platelets and kept him over night. He hoped the swelling would go down. His neck continued to swell and become more painful. His neck went out beyond his ears. They did a CAT and found the largest hemotoma they ever saw. He had emergency surgery Wednesday evening and has a full drain in the neck. My husband had a pulmonary embolism in March after the chemo at the start of radiation. He has been on blood thinners to avoid another embolism. It is a fine line they walk deciding the thinners vs a hemmorage. The cardiologist wanted to get him off Lovonex and on Coumadin so started him on Coumadin last Friday. The clotting test on Monday was at 1.2 and it should be between 2-3. They increased his Coumadin on Monday night and that sent him over the edge. At the hospital his clotting was 1.8, still not up to ideal dosage. They took him off all blood thinners and we now walk the line between a hemmorage in the surgical site and a blood clot. The cardiologist wants to wait a week from the surgery and start him back on half the Lovenox dosage and then add the Coumadin. We are terrified he will have another bleed. In any event we are home and they removed the drain today, stitches out on Friday. I really appreciate all the information and concern I have found here. Please let this be the last speed bump.

DCS

How is your husband doing?

My Dad had a bilateral ND in March. He had issues with swelling; visits back and forth the the dr's and emerg; on steriods a couple of times. Surgeon is not a fan of steriods and says it just all takes time. Easy for him to say.

During his hospital stay for the ND (the day he was to come home) his face swelled up so much and effected his breathing. They had to re-intubate him (a nightmare). They did an ultrasound and checked for clots (there weren't any).

During treatment back in 2006 he develeped a DVT in his calf. Also on Levenox for 3 months. It's fine now too.

The swelling comes and goes. One of dr's at the RO's clinic showed us some massaging to do on the scar to help with tightness. The physio therapist showed him stretching exercises for tightness and they say this really helps.

For the past few weeks he's been having MLD (manual lymphatic drainage) done by a professional (she also showed us how to do them at home). The surgeon and RO's office gave us the ok to do this. Since having MLD he sleeps good and feels better overall.

It's very scary when you swell and feel like you can't breath. My Dad said the tightness in his neck drives him crazy and he feels choked. Things are going much better now. He's 4 months post surgery and getting back to his old self. When you have a scare like my Dad did and your husband; it really plays on your mind. We keep steriods at home on hand. Don't ever hesitate to take your husband back and forth to the dr's or hospitals to check things out; even if just for peace of mind.


Ask your dr's about massaging and or MLD.

Keep us posted on how he's doing. How's his eating? My Dad's has improved. It does take time and you do have to be patient (the famous words of the dr's, that make us crazy )

Take care,
LisaB