Hi, This seems strange to me - but perhaps someone can tell me if they had a similar experience. My husband finished the radiation treatments on 11/29/02 - needless to say, for about a good month or two - there was constant phlegm...to the point where I was going through rolls of paper towels (for him) faster than the stores were cranking them out! Then as everyone mentioned....it went away almost as quickly as it came on. But then my husband had the surgery (neck dissection) on 2/6 - and as of lately, along with the swelling - the phlegm is back and constant - just like right after the radiation treatment. What could be causing this? I'm thinking it must have something to do with the swelling - but maybe it's still an after-effect of the radiation. And on the subject of the swelling - it looks to me that the one side of his face is still a bit puffy - but most of the swelling seems to be under the chin and neck area now. I suppose this is why a lot of the food/liquids are getting caught in his "2nd throat". Of course, I'm just trying to analyze this myself and trying to see if the pieces of the puzzle fit together. My husband has his next appt. on 5/13 with the oral surgeon. He has been eating solids - but he feels his body is trying to tell him not to eat solids - but perhaps be on liquids, so he wanted to give Ensure a try (again). Even after the radiation was over with - he was eating "solids" albeit soft foods w/lots of gravy or sauce, soups, etc - and it was tedious at first, but he was managing. I just don't know what to make of all this. Any feedback on this would be appreciated. Thanks so much.

Hi DonnaJean,

Believe it or not, it sounds as if your husband is doing well. He's able to eat solid foods. This is very important for various reasons. One, the function of eating/swallowing will help reduce the chance of scar tissue, strictures, and muscle fibrosis. It also helps to maintain a proper pH balance in the mouth. Of course, nutrition is very, very important. I am 5'10" and 180 pounds. I was consuming 3000 calories/day. If he needs to drink some Ensure to get the calorie count up, then go for it.

The puffy face, particularly in the morning is probably liquid that is having difficulty draining. It usually takes on a poochy or bloated look. This is no problem. It will eventually go away in a few months. I had it and its gone now.

Also, your husband's treatment was in reverse order than mine. He had the radiation first then surgery. As a result, the healing process will probably take a little longer and it's very important to try to keep the neck muscles limber.

Last but not least, I noticed "things" seemed to happen about every three months. Keep the faith and try to have fun.

Hope this helps,

Jeff

DonnaJean, When I am not feeling well my salliva aways begins to get thicker almost like the RAD saliva and I can't get rid of it. I don't know why this happens or if it is even common with the rest of the folks on this board, but that is what happens to me. The thick saliva is an indicator that I am coming down with something. Happens everytime. Sincerely, Donna

Thanks Jeff and Donna. I've noticed that the "puffy face" thing is constant with my husband - it lasts all day/night....but the biggest area of concern is under the chin and throat area...that's where the swelling seems to have traveled. Yesterday for dinner, he skipped the Ensure and was eating a few solids - but he seems to get filled up pretty fast, and doesn't finish a meal completely. I think of course, since the phlegm and the swallowing problem is the main culprit - I think it might be a good idea for him to ask to see a swallowing therapist when he goes for his next dr.s visit. Has anyone already gone through swallowing therapy - and can give a few tips on how to eat better without food getting stuck in the throat? He still is very tired most days - sleeping all the time. I have heard that it is rougher for people who have the radiation first - then surgery as far as the recovery process, but I just wish his body would finally find a way to "channel" these fluids already...so this swelling can go away already! I think if it wasn't for that - he would feel a lot better. He also has other medical issues which make recovery slower....and we are both trying to be as patient as we can with all of this. I still feel like maybe having this surgery wasn't such a good idea - since the radiation did a great job of killing the tumor - maybe the doctors should have waited with this procedure. But the oral surgeon said it was "necessary" and had to be done. It just seems to me that as time goes by - a person should gradually start to feel better - not more tired, with major phlegm and increased swelling - that doesn't sound like "healing" to me! Oh well, thanks again for replying - sorry if I tend to ramble on about this - it's a way for me to vent my frustration!

DonnaJean, from this thread and the Severe Inflammation thread I can tell you're getting real impaitient for things to get better. That's natural, expected, and a lot of us are in the same boat.

Problem is, and even more frustrating, we have to realize that we're not really in control all that much. The squeezing of the neck we've dissussed--the drug I mentioned didn't seem to help that much. Even worse, last time I took it, and then went out for a walk, my shoulder started hurting again. But then independent of it all, when my neck should be feeling worse because of the activity, it starts feeling better.

So then I ask myself, what he heck is causing it? Docs, as you said, just lump it into the it's annoying but not life threatening so no big deal category. Leaving me wondering if the swelling that I and your husband have is caused by diet, salt intake, barometeric pressure, impending snowfall, density altitude, tide, moon phase, or what.

Maybe the answer is that as much as we want to be, we're not really all that much in control of what's going on. Yes, there's common sense things like eat well, don't drink excessivly, don't smoke, don't do anything stupid or really dangerous. But then, some renegade cell somplace doesn't want to follow the general game plan and goes haywire, then goes on a breeding spree in our bodies and at the end of the day, here we are going through the meat grinder and radiation machines and causing the underwriters at the HMO to get ulcers.

So I complain to the ENT surgeon about the sore shoulder, swollen jaws, tenderness in various places on head and neck, tighness at the neck, and he just finally shakes his head, and says "Only a few years ago with a surgery like yours you would spend 10 days in the hospital, then be off work and resting for 6 weeks. You just spent 5 days in the hospital and then went back to work 3 days after that. The body needs time to heal. You aren't going to rush it no matter how much you try."

So it seems I've taken this opportunity for a Dennis Miller style rant, and I apologise for that. Just needed to vent also I guess. Hope that some of the ideas help others though.
Bob

Hi folks,

I'll chime in here with "were in the same boat" kind of comment. Let me tell you it is something of a relief to read about others with the same problems post surgery. Not because I'm happy you are having them, but happy that my various PAINS aren't just in my head (pun intended).

I think a couple of things to keep in mind is that they call it RADICAL for a reason (and it insn't a hip new term) It's because they are in there digging around willy nilly cutting and such with the idea of getting rid of a very bad thing. The result is we get a long life of minor aches and pains...(ok some are a little more than minor).

I would very much like to hear from a Surgeon who has personally been through this treatment. Then we would have the perspective from both sides (I think they call that bilateral) :p

Another thing that JET AGE Bob said that I found out to be true is that I feel best about 1 to 2 weeks after doing something really physical (like splitting firewood or digging up the garden). It seems contrary when things hurt even when you are laying in bed, but I have noticed this many times. If you have read some of my other posts I have suggested getting up and out and doing something, and that is why . I'd like to hear more about other experiences with this.

By the way it has been 26 months now since surgery and I still have the feeling of tight neck (although I am able to turn right and left pretty well), the remaining tendons and muscles seem to wind up like guitar strings and need GENTLE stretching (if you stretch too hard they get worse), strange painful areas (some are in my scalp oddly) that come and go, a sensation of swelling, (sometimes I actually can see swelling sometimes it is only a sensation), And my shoulder sometimes hurts badly. All of these problems I can live nicely with if it weren't for the fact that every little thing makes me wonder...(you all know what I mean don't you) and that is the BIG problem. Keeping that mind under control, reminding myself that it is the 1000th time that same little pain has come and gone...NOW THERE IS OUR GREATIST CHALLENGE!

Ok you guys! I know it seems like I'm beating a dead horse with this issue...and yes, I'll admit I'm FRUSTRATED AS HELL with this swelling business (sorry - didn't want to over-emphasize that, but it sure felt good!)....but the oral surgeon says everything is "coming along fine". How can that be, when a person is choking on their food all the time, and as of yesterday, my husband told me has been having some "breathing difficulty". He didn't elaborate, and he said he didn't want to tell me because I "worry too much". (who? me?). Anyways, I'm assuming because of the gross enlargement under his chin and throat area, there has to be some kind of constricted airways. I told him to make an appt. to see the surgeon - but he wants to wait until his appt. on the 13th. I told him to at LEAST see his PCP and perhaps they can order an x-ray or check his lungs, and he said if it gets "bad enough" - he will. Needless to say - he can be stubborn as a mule sometimes. And as far as excercising - yes, he does swim therapy on most nights - but he sleeps 90% of the day away. I explained to him this could be a thyroid problem, or anemia and he promised to bring it up on his next dr's visit if it's "still a problem". His shoulder and arm rotation is still not that good - but I know that can take a long time to heal and may never be quite the same again. Now I know this is a long thread and quite frankly everyone is tired of hearing about this - but it's the decreased appetite, the choking on food/liquid and the breathing difficulty that is bothering me to no end. Bob, you gotta admit - it feels good to vent, doesn't it?! Mark - thanks for the input and I will try very hard not to write any more on this subject if I can help it!! :rolleyes:

The swelling under my neck took almost 10 months to go away completely, but I NEVER had any swallowing problems that were not related to my throat being raw inside. I'd like to know that what he is experiencing is like mine, lymphedema, and not something else. It might be a good idea to just be sure that there is no infectious process going on here, to have someone in the know take a look/see. A visit to the surgeon ahead of schedule might be in order to eliminate anything bad and to put your minds at ease. Lymphedema takes a long time to resolve, and my "waddle" is still there 5 years later. Tell him not to be such a tough it out kinda guy, and get his butt over to the doc for a look. Tell him it's for your peace of mind not his.....

DonnaJean, Oh Man I didn't want you to stop writing! (just try and beat a dead horse I dare you) If it sounded that way It certainly wasn't meant that way.

Further In my opinion If his breathing is affected I think a trip to the doc is in order. (even if you didn't worry I would say that.) Breathing is rather important and you can tell him I said so! (it is even a possibility he is having an allergic reaction to something he is taking) Set up the appointment for him yourself and take a detour from his swimming date. He'll never know until it's too late. Also have you seen a lymph therapist? they are not common therapists but you should be able to find one. It is a specialty amongst physical therapists.

Last for now is to let you know the shoulder is helped alot by either having someone lift his arm gently as he extends it straight out from the side. another way this can be done is to have him walk his fingers up the side of a wall as far as he can go. do this several times a day and see if he can go a little higher each time. You have to do this to keep the shoulder flexible. After a while he can try gripping something overhead and letting his body weight gently stretch the shoulder (that feels really good) over some time he should be able to do most anything except certain overhead lifting. (I consider my shoulder about 95% ok now even though it is gets sore sometimes).

Ok, so I lied - and I'm writing again! But only to say thanks to everyone for the advice. I printed this out for Johnny - and hopefully, if he can stay awake for more than an hour - he will read it and take it to heart and head his buttocks over to the doc! And Mark - I don't plan on not writing, but when I start to annoy myself with the same post - THAT'S BAD! (my attempt at comedy). And I changed my mind about beating a dead horse - can't find any out here in the city - I think they all got shipped out to the glue factory. (just kidding!). Thanks for being patient and the helpful advice once again.