Hello to All, Does anyone have any new ideas on how to help relieve the numbness and swelling in the face and neck area? John had the modified radical neck dissection surgery on 2/6/03 - and the side of his face is quite puffed up, along with under the chin and side of neck. He has tried the lateral massage and that is not helping too much. He also tried sleeping propped up at night - but that is not good, since he always ends up sliding down on the pillow - and ends up in a flat position. He has tried taking Advil (as the doctor advised) but that's not doing anything either. Some days are better than others - but as of today he said it feels worse than before. The doctor on his last visit on the 25th, said that it just has to "run it's course". But I was wondering if using one of those hand-held electric massagers would do any good? There's a lot of numbness in the facial and neck area, so maybe something with more intensity would be helpful. Any ideas or thoughts on this would be appreciated. Thanks for your help!

Donnajean, it has been one year since my modified radical neck dissection, and I have residual numbness that I expect to have forever more. There has been a great improvement in feeling in the past year, and I even think some continuation of improvement now. For example, now when my neck itches and I scratch it, I can feel it. Not as acutely as on the undamaged side, but still a lot better than before. I think patience is the virtue necessary here. As far as the remaining numbness, I look on that as a small price to pay for what I gained from the surgery. Tell your husband to hang in there. I am sorry about the continued swelling and have no suggestions. I do know that my neck still feels tight in the evenings, but that is not visible.
Joanna
Edited to add that I wouldn't advise use of an electric massager without an okay from the doc.

DonnaJean,
I am not sure if your husband's constant tiredness and inflammation are a result of abnormal blood sugar level as your husband is diabetic. Since I am also suffering from type II diabetes, my oncologist always explains to me that the illness makes me feel tired and the healing of mouth sore takes a much longer time than other people. I am more than a year post treatment and the sore on my tongue never goes away even though I have tried hard to maintain my blood sugar level.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Thanks Joanna and Karen, Today Johnny was really sick - his left ear (not the side that was treated) is totally blocked - he thinks from using a Q-tip a few days ago and may have impacted some wax, but that's just his opinion. He also had diarrhea and threw up 3x today. I have no idea what from. I took his temperature when I got home from work - and it was in the normal range. I don't know if he was so sick from an "inner ear infection" or could it be the swelling? It could be maybe something he ate - but we both ate the same thing the night before - and I wasn't ill from it. He only had cereal this morning - so that couldn't be it. He also had a bad headache -but after a couple of Excedrin's I gave him - that seemed to subside. He also said that the "OralBalance" gel he uses - often builds up in the back of his throat and makes him gag - so that could have contributed to it. His surgeon recommended NOT to use that - but just drink water instead to keep his mouth moist. Boy, I tell you - if it isn't one thing it's another. It's so frustrating! Sorry to keep rambling - but this swelling has both got us at our wits end. But we will muddle through somehow I guess! I just feel so helpless - I wish I could do "something" to ease the inflammation.

Oops - make that 4x he got sick today - just recently after trying to swallow some of his daily pills. He didn't have any trouble with them before (except for the really huge ones) - but as of today - he seems to gag on them and throws up. He has another dr's appt. in 2 weeks. In the meantine, does anyone have a clue what could be causing this? He was doing fairly OK yesterday - tired, but not sick like he is today.

Donnajean, I am confused (as well as really sorry for your husband). The thread title mentions inflammation, which indicates inflamed, red skin, but you then mention just swelling. If the swelling is indeed inflamed, that means it is probably infected, and needs to be seen to by his doctor. Make sense?
Joanna

Donnajean,

I don't have a clue as to what is going on, just that something is definitely WRONG! Please call the doctor and see if they can't get him an earlier appt. Tell them everything you just said here in your post. 2 weeks is too long to wait.

Good luck,
Rosie

DonnaJean,
OralBalance gel isn't good for me, either.Drinking water so far is the best tool to keep the mouth moist for some time. Don't compare yourself with your husband who is much weaker now and the stomach can be very sensitive to any food he takes. I won't say that having a diarrhea and throwing up is normal but don't panic. Rosie is right that the best thing to do now is to see the doctor as soon as possible. Never wait until you have all your questions answered. By the way, Rosie, how is Heather doing these days? Has she started chemo yet? My best wishes to you all.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Thanks everyone. Joanna - I need to clarify. His face and especially under the chin - do not really look red - slightly pink, but definitely not red in color. It's pretty warm to the touch - and I asked him what does it feel like for him, and he said it was like "someone coming up from behind your neck and trying to choke you". There's a definite firmness around the side of the face and neck and under the chin (on the side of the surgery). I'm helping him with the massage - and he says it feels good when I do that - but it's not bringing down the puffiness. I realize by everyone's response - that this is going to take time, but it's driving him nuts! It's effecting his eating habit - he's not eating as much as of late, but still managing with most solids - since he wants to try and get as much nutrition and calories he can get. He's still has lost a great deal of weight - but trying to maintain the weight he's at now. However I noticed that he has lost a LOT of muscle mass in his legs and arms. What muscle he had there has turned to "hanging flab". I would imagine this is from the relative inactivity he's experiencing - considering he just lays around on most days (too tired!). The blocked ear he had the other day is not as bad today - thanks to some Cipro ear drops he has been using. Also - he did not throw up today - and for the most part, the diarhhea is better too. He does have a lot of the "phlegm problem" that's returned - even now when he has not been using the Oral Balance gel - there's still a lot of the phlegm buildup. I just can't believe that with all the medicines that are available for all different kinds of ailments - there is nothing the doctor can give him to bring this swelling (probably not inflammation) down. Thanks again for listening - and I hope everyone is doing well. Good luck and best wishes to everyone here too.

Donnajean,

I can only speak from my experience on this. About 2 weeks post-op, in September 2002, the swelling under my neck started to move up to the side of my face. I was told to expect the swelling and discomfort UNDER my chin. I called my Surgeon and went to the hospital where a cat scan revealed 2 pockets of infection in the surgical field. These were opened, drained and allowed to heal inside to outside. I ended up in the hospital on antibiotics and anti fugal medications for a week. This may not be the problem your husband is experiencing but I would have it checked sooner than later, it does not sound right! Take care. I forgot to mention, I had the mandible split and left side neck dissection for tonsil/tongue(small section) SCC. Radiation was post-Op.

Glenn

Glenn, I mentioned this to my husband - what you had experienced after your surgery, and he said he thinks he can wait it out till his next doctors appt. in 2 weeks. Personally, I am worried about this - and am trying to urge him to get this checked out sooner. When he went to his surgeon on the 25th of March - the doc looked at everything and didn't see any "problem" or abnormality as far as the swelling is concerned. But then again - if there is a lot of fluid buildup there (which it seems to me there is - due to the fullness under the chin) I think he should see if they can drain it for him. Thanks for the post - it was very informative. Take care.

Donnajean,

Hope things are better today??? I can pass along a couple of things I was told by doctors.

The body when losing a lot of weight will begin eating your muscle mass first and save the fat for protection. This is what has happened to me and my legs especially. Also, this is why Brian talks about getting nutrition with things such as Ensure and Boost instead of my favorite I lived on "Cheesecake". No one ever explained the nutrition piece to us until I started chemo. The radiation docs just kept harping on weight.

The other thing I just heard (pun intended) from my NEW Ent was that radiation can also cause damage to the Eustation tubes and they don't drain as well as they used to. We are watching mine now to see if they will place tubes in them...just like they did my daughter when she was little. (I asked her if she was going to come down and stay with me for that - like I did her, she said IF I had any hair - I don't - she'd come wash it in the sink for me..that was a safe offer on her part)


Hope some of this answers your questions.

Dinah

Donnajean,

I was at the surgeon to have staples out on 9/25/02 and in the hospital on 9/29/02 for the infection. This is after complaining about the swelling on the 25th!!! Absent insurance or financial issues I can't imagine why he would wait 2 weeks. A small issue can become a big problem in a very short time.

As always, it is important that if something is getting consistently worse, you should bring this to your doctor

Donnajean,

People are soon going to want to kick me off this forum for my doom and gloom opinions, but I am really concerned about your husband. The feeling like someone is grabbing him by the throat from behind and the fullness (possibility of fluid) under the chin are just too similar to some of Heather's symptoms. Yes, it is probably just residual effects from his treatment, but I really think you need to get him to the dr ASAP. Good luck!

Rainbows & hugs,
Rosie

Thanks again to everyone for their thoughts and concern regarding my husband. John seems to be a bit better today - but the left (blocked) ear is still bugging him. He was eating better today - he had eggs for breakfast, and a fairly large dinner with meat included. I was doing some research on the net, and I was trying to find more information on the loss of muscle tone in cancer patients - and it mentions a disease called "cachexia" which is fairly common in people with cancer. If my husband is losing muscle tone in the arms and legs - could this be a sign of this disease, which is a "wasting syndrome"? Rosie - thanks (I think!) for the information - but it sure did give me a scare. I think this hopefully will spur John to get to the doctor to get this checked out asap. How is Heather doing lately? Is the chemo she is getting helping to get rid of the re-occurance? Thanks Dinah and Brian as well - the clarification on the words "inflammmation" and "swelling" has been very helpful. I will keep everyone posted on how my husband is doing.

Your husband is only three weeks out from his surgery. Not to mention other treatments. Lymphedema, or the collection of fluids in the surgical area would be normal at this time. My own swelling under my neck and chin didn't go down for almost three months. As I said before, ask your doctor if he feels this is normal, no one here is going to be able to tell you that that amount of swelling that he has, in some abstract definition of if it is a lot or a little, is normal or not. But swelling after this type of surgery is commonplace, and is to be expected. Lymphedema cannot be drained. Your body has to develop new ways to process it. This will take time, a lot more than three weeks. Obviously you want to be sure this is not an infection. But only your doctor and a blood test are going to determnine that. Lastly, a note to everyone who reads these boards. You have to have a realistic idea of what is going to happen after these treatments. To have the lymph nodes etc. removed after a neck dissection is going to throw your heads ability to process lymph fluid out the window. It will take months for new pathways to develop for these lymph fluids to be able to move on. Swelling is to be expected. Soreness and tenderness to the touch is to be expected. Pain is to be expected. Numbness is certainly to be expected that may last a lifetime, since they are cutting through nerve bundles to do the procedure. Weight loss??? Hardly anyone I know that has been through this is eating the 2000 healthful calories per day that it takes to keep their weight normal, let alone build back weight lost during treatments. Donnajean, can you say that your husband is eating more than 2000 calories per day, every day? If he isn't, which I doubt...he is going to lose weight. This doesn't mean that he has Cachexia!!! Look to the most logical answers first. If there are logical reasons for something to be occurring, then the likelihood is that those ARE the reasons, not some other, more rare disease or ailment. As to others who care to speculate without considering these more likely scenarios, you are undoubtedly causing anxiety in others, that you respond to. If we cry wolf at every symptom, especially those that have more likely causes, who will take your comments seriously when you actually hit the nail on the head?

I totally agree with Brian that both the cancer patients and their caregivers should be more realistic about their illness and the effects brought about by the treatment. We are fighting a life threatening illness and not a flu. It certainly takes a very long time, not a matter of days or weeks to recover ourselves and to expect ourselves to return to normal within a certain period of time can be rather naive.It took me more than a year to gain back the weight I lost during treatment( in fact I didn't lose as much weight as some of you did here). Other side effects like numbness, mouth sore, dry mouth.. are still with me.What we can do is apart from getting appropriate professional advice, we should not impose further stress on ourselves.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Ok Brian and Karen - I'll admit you did knock me back to reality. And yes - that makes perfect sense to go with the most likely scenarios - before jumping to conclusions. But I think like everyone else - it's not always easy to keep a level head about things. I tend to notice little changes in my husband, and sometimes rationality flies out the window and panic sets in. When that happens, I often think of the "worst case" it could be. But to get back on track with things - let me say that John was doing better overall today. Last night he couldn't sleep - and he actually had quite a bit of energy today (don't know where that came from!) and was doing activities around the apartment. He is eating fairly well - but as much as I try to feed him - he is by no means the "wolf" he was at eating food like he was pre-treatment, and I don't believe he is getting 2000 calories every day, although I do my best to keep the food varied and calorie-rich as possible, considering he still is restricted on a LOT of foods he normally would love to eat, but can't. And if I'm not mistaken, doesn't it take 3500 calories to gain a pound? If that's the case - forget it! He's no way even close to that calorie amount. His ear (the other non-treated side) is still blocked, but he didn't complain too much about it lately. The swelling is a pain in the neck (no pun intended) and his "hole" in the skin where the stitches came apart still hasn't closed up yet. The phlegm/mucous is still reaking havoc which is a bit surprising because it seemed like that had diminished a few months ago. And even though it's bothersome now - it's not as severe as when he was going through the rads. Well, anyways - thanks again for the "shot of common sense" that I needed to hear - it was just what the doctor ordered!

Dear DonnaJean,
I posted a recipe for a milkshake that literally saved my husband earlier. (Sorry Brian, not sure where it is now) If your husband likes sweets, this is the one for him! 1300 calories in 20 ozs! Let me know if you are interested, and I'll be happy to repeat it for you. My hubby's radiologist now gives this to all her patients.
Love to you,
Mandi

Hi Mandi!

I would love to have the recipe for the milkshake. My Dad's tumor is about ther size of a small egg on the inside of his mouth and it seems like milkshakes,pudding, and yogurt are all he can seem to get down( besides Boost). He started chemo today so who knows what he will be able to keep down during chemo. I have heard it is different for everyone.
Thanks lots,
Kacy

Mandi, Thanks for responding and yep, I did see that recipe on your other post from some time ago. I was so thrilled with it - I copied it and have it stuck to my refrigerator to have on hand! I believe you and Dennis had dubbed it the "MEGA-SHAKE". Anyways - I have the recipe handy and here it is for anyone interested again.

Blend together:

1/2 cup whole milk
1/2 cup half-and-half
2 cups ice-cream
1 TBSP. malted milk
2 TBSP. Ovaltine
1 package Carnation Instant Breakfast

Thank you so very much for sharing this recipe with us. I'm sure it will be very helpful to those who are having a hard time with solids or just love to savor something sweet and creamy. I hope your husband is doing well - and my best wishes to you both in this battle. Take care.

Mandi...if you ever want to find something in the message boards, just go to the search link under the title, next to "my profile,' and type in your key search words, and select search all forums. I just typed in megashake, and it search everything and turned up your original post. Now if you want to send that post to someone, there is an "email this post link" and you can just enter their email address or you can copy the post http address out of the top of your browser, and paste that into your response to them. In this case http://www.oralcancerfoundation.org/ubb/ultimatebb.php?ubb=get_topic;f=6;t=000079;p=2#000043

Thanks DonnaJean for the recipe! I hope to make it for my Dad soon!

Kacy

When I broke my leg back in the 70's, I lost 50% of the muscle mass in the leg in a few weeks because it was in a cast. It is normal for the body to absorb muscle tissue when the muscles aren't being used (I believe they call this atrophy). I have lost a lot of muscle mass just be being in bed so much. I am a little under 3 weeks away from treatment (rad/chemo) and am only out of bed a few hours a day. I am slowly getting a little more energy every day.
And, also, I have had days where I throw up all of my pills also, have a hard time keeping water down - radiation sickness??

Gary,
My husband is 2 weeks away from radiation and chemo and is also spending most of his time in bed and has very low energy. He also throws up once in awhile, particularly when he takes his antibiotic (he had an infection of his pic line that was inserted to deliver the Ethyol). He is also continuing ot lose weight, even though he is getting almost 3000 calories through the PEG tube. Are you experiencing weight loss post treatment? He has lost so much weight it is scary. But he had an ENT/Oncologist appointment yesterday and they reassured us that this post-treatment period is the hardest part.

Hope you both start feeling better soon.

Anita

Hi Anita,
Yes, I am still losing weight -about a pound or two a week. I did not have a PEG tube. Your oncologist was right on the money - post radiation treatment is the roughest part. I was suddenly ill this morning for no apparent reason (I felt fine yesterday). It's exactly three weeks for me today and I'm still waiting for a positive change. I am also experiencing a lot of the thyroid damage symptoms -fast pulse rate. hot & cold, etc.

Hi, as most of you know, my husband had the modified neck dissection surgery on 2/6/03 and has had quite a problem with the swelling from it. Well, yep - he still has it, only now it seems like it's "traveling" to the other side of his face. It also still hurts to swallow with the gullet in his throat. ( A pool or pocket where food and liquid and pills seem to get caught). The doctors he has seen recently (his oral surgeon and radiation oncologist) do not seem too concerned about it...basically telling him there isn't anything that can be done for it. The radiation doctor did find it odd that John still can't eat "any" food he wants - but the fact remains that there are many things still off limits yet because it's either too spicy, hard, dry or involves a lot of chewing. And this swelling he is experiencing only complicates matters. I don't really expect anyone to offer any solutions to this problem - believe me, John has tried just about everything - and nothing seems to help. I guess I just wanted to throw this out there and to see if anyone has experienced any swelling that seems to move to the other side of the face as well as the original side. Thanks for listening.

Donnna in the last few day's I've started with sort of the same thing. Remembering I had the neck dissection on the left side in September, things had pretty much gotten back to normal by the time of the dissection on the right side. Now, the right side is swollen obviously, but I'm feeling the sensation of someone grabbing my neck and squeezing on both sides now, left side also.

Going to make an appt with the ENT this week and see what's up. Also will see the radiation doc today (chemo/rad week 2) and see what he says.

Bob

Bob - please keep us posted on what the ENT doc says. I hope all turns out well for you. My husband was just seen by his surgeon on 4/8 and the radiation oncologist on 4/11 - neither one expressed any concern over the swelling - or the "squeezing/tightness" sensation (like someone is trying to choke you from behind) - so if it was anything to worry about, I'm sure they would have said something. Nonetheless, being the worry-wart that I am - it's frustrating not having all the answers and even more aggravating is the fact that I can't "do" anything to help him feel any better - except be there for support and encouragement and be the best home-nurse I can try to be. His next Dr's appt. is not until 5/13. But please let us know how things are going - and I wish you all the best. Take care.

Donna, Did talk about this to both the ENT and the RAD doc this week. Haven't checked the board lately because I've been really shagged out with the treatment, but that's another story.

Neither seemed to overly concerned. ENT seemed like it's normal, as long as I can swallow, breathe etc. Says its from the radiation. RAD doc says it might be muscle spasms, caused by the radiation. To me it seems to be worse after I start moving around, walking a lot or such. So, RAD doc gave me some Celebrex to try, start with one 200mg pill, then if that doesn't work try 2 200mg pills.

I've also started trying stretching excercises on my own, looking up, down, etc. There's not much swelling in the areas that bother me, it does mainly feel like a tight muscle thing. Will keep a watch on it all.

I guess this all takes care of itself later on, I sure hope so.
Bob

Bob - thanks for posting. Sounds like everything is falling under the "nuisance" category - as opposed to the "this is something to worry about" one. (A much better option in the long run)... Anyways, If the docs aren't worrying about all of this too much - I'm sure that in itself can help a person breathe a bit easier. As you mentioned - keep a watchful eye on everything - and let us know how the Celebrex is working out and how things are going.