Hi All,

My Dad had the neck dissection (bilateral ND and biopsy around the neck area.) As you may recall my Dad had lots of nodes to both sides of neck. Treatment finished June/06. Aug scans; tumour was gone and the nodes shrunk 50% (some nodes still as large as 1.9 cms).

My Dad declined the ND; PET was negative.

So after much consideration and a scan scare that was really just miscommunication between dr's; he decided to have it done.

He had it on Tues March 13 and everything went fine (5 hour surgery). In ICU for a couple of days with intubation. (Oh ya they intubated him awake before surgery because of post treatment swelling.)

By Friday he was walking around and eating ok. On the Sat morning he had alot of swelling and a breathing scare and the 'young' resident dr rushed him back to the OR and intubated him and back in ICU for a few days. What a nightmare! (One of the surgeons said she would of handled it differently and given him more steriods for swelling) grrrrr. So he was in longer; a total of 11 days. He came home Friday (23rd), what a relief!

He's doing fine now and feeling better each day. He's tired and uncomfortable. He won't take anything for pain (doesn't like how they make him feel). He said not much pain; more just uncomfortable. Feels like a board is strapped to his neck.

He can't get comfortable in bed unless he lays on his side. He propts up the pillows and plays around with different positions. Laying on his back makes the neck feel tight. Laying on his side seems to cause swelling.

He's eating pretty good now. He got the staples out on Thurs and got the results; and there is NO cancer. Great news!

He develeoped gallstone problem now; he has more pain from that then the ND.

Today he's having some bruisng under the chin. Is that common? Could it be from the staples being removed? The swelling was going down; now since Thurs he seems to be having more swelling on and off (swells then goes down).

Any comments or suggestions.

Thanks
LisaB

Hi Lisa,

Sounds like you and your dad have been through quite an ordeal. I hope things start getting better very soon.

Speaking from my personal experience, it is most likely that your dad's problems with his neck are probably a combination of 2 things. The removal of the staples could certainly cause bruising due to some bleeding under the surface of the skin. The swelling is probably from lymphedema. This is an accumulation of lymph fluids in the area where nodes are removed. There is no place for the fluids to drain with the nodes gone. He should definitely check with the surgeon about both of these things as soon as possible to find out exactly what is going on. If it is lymphedema, I'm not sure how this is handled. Since I had nodes removed only on one side, I was taught how to massage the fluids to the other side of my neck to establish new drainage channels. Not sure what is done after a bilateral neck dissection.

Sorry I couldn't be more helpful.

Jerry

Hi Lisa,

Did you dad have drainage tubes put in during his ND? My husband had a ND on one side and they put in 2 drainage tubes. They removed one on about the 3rd day and the other the day he was discharged. They would measure the drainage in the "bulb" and woldn't remove the last one until the daily total of fluid being drained was below a certain amount.

Vicki

Hi

Jerry yes it was quite an ordeal and I've left out alot of the scary stuff.

Ok I looked at the bruising today and there is not much of that. The bottom part of the cheeks are full looking (swollen for sure). I told the surgeon on Thurs that they swell in the morning and he said it's normal and explained the fluids have to figure out where to drain. Now they just seem to be swollen all day and don't go down much.

Yes Vicki he did have drains in; they were removed during his hospital stay.

He's not complaining about the swelling bothering him in any way; so that's good. We just keep a tab on it. The surgeon won't be in till Monday.

Today his voice is more hoarse and his throat feels a bit scratchy. He figures because he's eating more solids now and talking more. He also said he can't open his mouth all the way when he eats.

Thanks!

Lisa,

Good that the bruising is healing. Hopefully the surgeon tomorrow will confirm that lymphedema is the only cause of the swelling and not infection. If so, ask if there is anyone to help with teaching you and your dad to help the lymph establish new drainage paths with proper massage.

Also is sounds like he is in need of physical therapy for his loss of the ability to open his mouth wide enough. It isn't uncommon to get therapy for his arms and shoulders, too, as they may end up having some limitations of movement. These should all be made available to him.

Jerry

The swelling is up a bit so he just took some steriod; prednisone. So we'll see if that helps.

Thanks

Lisa, Jack had swelling from lymphedema and part of his physical therapy was learning the massage techniques to improve that. The PT also fitted him for a facioplasty sling - like a jobt stocking that goes around the head area - and he wore that at night to help the swelling.

The good news is that all of this gets better. In Jack's case the swelling improved dramatically after a few weeks and then leveled off. It took several months to finally go away all together but it did. He's also had good return with range of motion.

Has anyone talked to you about getting a Therabyte jaw exerciser? Our insurance did pay for it since it was a medical necessity. It sounds like your Dad is having trismus - if you do a search here and on the home page you will find all kinds of information. In the meantime, stretching exercises like yawning help too.

Great news on the results.
Regards JoAnne

Hi JoAnne,

Ok after he took the steriod on Sunday night; he felt better Monday and the swelling went down a wee bit (not much). Mainly his breathing sounded better and that was the concern.

We talked to the surgeons office on the phone Monday to see if he should be taking more of the steriod. The surgeon said NO and he wasn't aware the other dr prescribed it. (It was really just a back up for swelling if really needed.)

The reason we were so concerned is because the swelling initially went down after surgery. It would go up in the morning and back down at night. This time it went up and seems to be staying up. So that concerns us. The surgeon says it's normal and didn't ask us to come in.

They set up home care physiotherapy; we are just waiting to hear back from them. (Canadian health care system covers it.)

He's only been home 1 1/2 weeks now; so sounds like this kind of swelling is ok.

So confusing and scary.

I'll tell him about the yawning stretching.

Monday he got out of the house shopping and stuff; for the first time; and again today. So that's good progress.

He's eating pretty good.

Thanks!