Hi to All, As many of you know - my husband Johnny had the modified radical neck dissection done on 2/6/03. He finished radiation treatment at the end of November 2002. There has been significant swelling/puffiness in the face and neck, along with increased phlegm, headaches and occasional nausea, etc. Although for the most part, he seems to have gotten better - as of the past few days, his appetite is non-existant as he has been complaining of a constant sore throat and side of face where the surgery was done. But what mostly (still) bothers him is the "throat problem" whereas swallowing is difficult and he often chokes on food and medications. To feel his throat - it is extremely hard. I mean, it feels totally "solid" except where the creases in the skin are..then it kind of dips and then it's a solid, hard feeling again. Is this normal? It's only been 4 months post surgery, and I know he's still healing - but he's said he's been feeling blahsay and tired again...and has no appetite at all now. He was eating pretty good a few weeks ago, for the most part. His next doctor's appt. is not until the 24th. On his last visit, the oral surgeon didn't say anything about it - except that's part of the healing process and nothing can be done about it. Has anyone else experienced a hard, solid feeling on their throat? The one side of his face is pretty much the same way too. Thanks so much for any info. you can give me.

Hi Joanna,

I'm standing up waving my hand to say "me too" I am 1 1/2 years out of surgery and my throat on that side is still hard. I can only speak for myself, but I still have trouble swallowing some things. I attributed it to the chemo aggravating my healing process. That's just my thought.

I have an appointment with my "new" ENT today to get a reading on my ct scans and I plan to discuss my backward progress with him.

So I really am no help on the swalowing problem you have, since my circustances are so different, but my neck is hard. I know some people were told early on about massage and maybe that helped them. I was never told about that.

Good luck and I hope he feels better soon. If not I'd sure call the doctor and not wait until the 24th. Piece of mind is so very important in handling things.

Take care,
Dinah

PS - Check your private messages - I sent you one a month ago and it's unread??

Hi Donna,
My radiation oncologist warned me that there would be a "texture" to the side of my throat where the tumor was and the bulk of the radiation delivered. I am having to learn new tricks to swallow without choking. I have found that things go better the longer I have been up and awake. I struggle through breakfast choking on every other bite and then it seems to improve as the day wears on.

My appetite is good as long as I can keep the constipation at bay - that's my main appetite killer these days.

I still get "hardness" under my chin and on the side of the neck that the dissection was done on and it is one of the issues that still bothers me. I was told by my doctors that this is a normal condition and I have seen them all (Head and Neck surgeon, ENT, Radiation Oncologist and Oral Surgeon) in the last 3 weeks. They say it is a due to the beating the area took and it will come and go. The problem I have with it is that if it is, as they say, primarily lymphatic fluid then why is it hard and not like.....like.....like a water filled area? As far as the effect on swallowing is concerned I do notice that when I'm having a "hard neck" period my throat feels slightly constricted. I would imagine that the external pressure on the throat area will reduce the internal area. All I can offer beyond this is that I have healed and recovered exceptionally well and I'm 9 months out from surgery today, so John may need some more time. Additionally, I had the surgery first so I believe the healing process was a bit easier than post radiation surgery.

On the feeling blahsay issue, I had some very minor oral surgery done last week and I was walking around like they just split my jaw open again! My poor girlfriend and daughter. It don't take much to remind you that you have gone through hell and any, even minor, setbacks will put you in a down mood. As time goes on his neck and mood will improve!

Hello again....and thank you all for the reply's. The hardness under the chin and side of face, seems to be a real appetite killer. Although John still manages to eat - he gets filled up for the whole day on just a small sandwich at lunchtime. He was doing so much better before, but instead of easing up...his throat feels even more "tighter" or "constricted". He also said every now and then he feels shooting pain in his neck/throat - like someone throwing daggers. I know that can't be normal! He just told me about the shooting pains after I posted my question - so I didn't get to mention that part before. He is going to see if he can get an earlier appt. (instead of the 24th) to see the oral surgeon. He sees his radiation oncologist in July.

GRE1 - I had the same thought - if this is supposed to be lymphatic fluid, why does it feel like a "rock" and not like "water-filled"? I do the massage on his face and throat every day - but I don't see any change. Well, maybe it just takes more time - but I won't rest easy until I know that for sure. Sloooooow, doesn't even begin to describe how long the healing process takes! I was thinking that maybe he needs to get another esophageal dilation done - since when he had that at the time of the neck dissection, that really seemed to help. We'll check with the doctor - at least it wouldn't hurt to ask.

Hi Donna,

I'm still dealing with the tighness aound the throat also but it seems not as bad these days. One thing I did start doing in hopes of reducing it was just plain stretching. Looking up, down, left right, etc. Seemed after a while to help.
But it's worse after a meal that requires a lot of chewing.

Neck hard on both sides where it was irradiated, but the side that got nuked first seems to be softening up. Build up of lymphatic fluid on both sides of jaw seem more like the fluid filled sacks you were talking about, so I'm guessing the hardness of the neck is something different altogether. Anyway, docs said it was normal.

Also getting shooting pains, come and goes. Suspect that's just the healing process from the surgery, nerves knitting together. What's strange is the sometimes itching on my neck, and scratching the itch and realizing I can't feel the scratching.

Sounds like your husband and I experiencing a lot of the same things to different degrees. As far as appetite, general feeling, some days are good, some not. For me some foods just don't taste all that good anymore, or are too dry, and that's dissapointing. Who feels like eating when you can't enjoy it.

i find that my hard neck comes and goes. it depends alot on how i have slept. make sure you don't lay on the side where the lymph nodes were removed....all of the lymph fluid builds up and then has to find a place to drain out of.

i've also found that my allergies add to my neck stiffness. insead of getting swollen lymph nodes, i now end up with a hard neck. i guess that just comes with the territory.

i often find that a heating pad really helps my neck when things get swollen and sore. i have this herbal pack that goes in the microwave and it works wonders.

My husband went to his regular PCP today to get some Rx's that he needed - his doc couldn't believe how hard or firm his throat and side of face (cheek) felt! John wasn't having one of his "better" days today - he was sick about 4x and has been saying that his shoulder is so stiff and sore, along with his throat. I think he was sick on something he ate this morning (breakfast sandwich with sausage in it)..that might have been the culprit. But anyways, I'm hoping he feels better again soon. His next appt. with his oral surgeon is set for next week. Generally speaking, John doesn't sleep on the side of the surgery....but no matter how he sleeps or what angle, the "hardened neck syndrome" is still there and a constant problem. He is currently 4 months post-op, so I imagine this still needs more time to heal. At his last doctors visit - the surgeon didn't seem too concerned - like everyone has said, seems to be the "norm" under this circumstance. Anyways - thanks again to all for the helpful feedback. I do sppreciate it!

hi,

i'm about 18 months post chemo&rad and sometimes feel that my throat is 'toughening' up.

i've found that keeping well hydrated helps AND

i've found that my throat feels much better when i have some olive oil...

now i have olive oil in my morning chocolate shake and at other times, half a teaspoon of olive oil is quite nice.

it seems that the oil keeps the parts lubricated and reduces moisture loss.

this is all probably a bunch of bull, but it works for me.

cu,
larryb

Hi Larryb, That's an interesting tip - and I may just give it a try! Does anyone know if there's a name for this kind of condition? I don't know what the medical term is...I just call it "hardened throat"! But if you ask me, it's not Lymphadema (it's not really swollen - just hard. solid. firm. not elastic-like. I don't know how else to really describe it - but those of you that have this or have been through it, probably know what I'm talking about. But thanks again for the tip on olive oil - I don't know if it works for everyone - but if you had success with it, I'd keep on doing what your doing - it seems to be working some magic!

OK here is my 2 cents worth: When ever my neck feels different or "worse" I take a large dose of vitimin E. I will NOT tell you that vitimin E is the cure (because I still have a rather big scar ) but it seems to help for me. Interesting to note that E is oily. Perhaps Larry is on to something...Of course olive oil is good for you anyway.

You guys could be on to something here with the "oil" idea. (Olive oil and Vitamin E). Hey, like the (proverbial) chicken soup - it couldn't hurt! John does take 2 Vitamin E capsules a day, but maybe I'll start slipping in some olive oil into his breakfast too...if nothing else, like you mentioned Mark...it is healthy and good for you!

OK while we're on the home remedies..... among the many things that my wife rubbed on my trashed neck, was vitamin E, not a lotion, but the contents of capsules ment to be taken orally. You wouldn't believe the change it produced. It won't hurt anything, and topical application to those scars while they were healing seemed to speed things up and the resulting scar is VERY small. ( OK it's a foot long, but I mean it isn't bulgeing or swollen and raised.)

Since John gets plenty of Vitamin E capsules from the VA, not only will I continue to give him the capsules 2X a day, but I think I will try the opened capsules and apply the oil directly onto his neck. And if at all possible - I will sneak in some olive oil into his food as much as I can. I wonder if taking "any" kind of oil capsule would help - such as cod liver oil or any type of fish oil? With all this oil on him/in him - I'm going to have to call the clean-up crew from the Exxon Valdez!

There is more to this than meets the eye...it isn't just about oil. So the caveat, oils are fats. If you want to ingest them, only mono saturated please. That would be olive as an example. Consuming other types won't have the same benefits. Also you want to get those that have omega 3's. Good fish oils have them, but many of the cheaper capsules are full of contaminants. A safe alternative is Flax Seed oil, again available as a capsule. When you really want to get picky about what is good and not for you. take a look at the labels on all the stuff that you put in your mouth. No saturated fats, they play hell with your cardiovascular system over the years, and no hydrogenated fats which have been linked to cancers. This subject could take up a whole chapter in a book. This is just a starting point.

Good point Brian....there are certainly some oils/fats that are obviously not good for anyone - at least not in large amounts. The point about flax seed oil is well taken. A prominant "natural health" doctor (whom I won't name) touts the benefits of flax seed for other purposes as well...especially beneficial for men and helping to keep the prostate healthy. He also did mention omega-3 oils too. I will look into this at my local nutrition center. Thanks for the good advice!

In addition to the hardness of my neck, my voice also got hoarse, do you have similar experience ? Or this hoarse voice is something that should be checked out with ENT ?


Thanks

WZ... anytime there is a chnage of significance like in your voice becoming hoarse for a prolonged period of time you should have it checked out. In my own case this happens sporadically when I lecture, but if it is happening for no good reason, and it is not going away after a day or so, you should have it checked out.

Thanks Brian, I will make an appointment with my ENT right away to have it checked out.

On a seperate note, I remember one of the comemnts you made about the recovery from radiation treatment that for each week of radiaiton treatment, one needs a month to recover. I felt this is very true.

My Rad ended Nov 2002, I noticed last month (May) the lymphedema/swell under my chin/cheek is finally gone. But, it was since then that I felt the hardness of my neck started to get worse and my voice started to change. I am wondering if these events are related or there is something else that is developing.

My neck is still hard 5 years out. The fact is all those fatty tissues had to go with the neck dissection, and the body is disinclined to put more back there. If you have been hoarse since treatment and this is not something new, this could be nothing more than scar tissue on your larynx, also a problem that I had for an extended period after radiation. Survivorship is synonymous with vigilance. It never hurts to have an educated eye check you out.

Brain,
Did physical therapy help you with this "neck hardness" issue (if you had PT)? My husband is trying everything he can to try to regain motion of neck and shoulder...accupuncture, massage, and now physical therapy. We're seeing slight improvement but the ENT surgeon did say at the last check that it takes MANY months for the nerves that supply the muscles in the area to recover from surgery and radiation.

Thanks,
Anita

For most people with radical necks, physical therapy helps some. I've yet to hear from anyone that said acupuncture resolved anything, and massage feels like nothing, since I've no feeling anymore on the right side of my neck. For most of us the nerves were severed at the time of the surgery, I knew it was going to happen going into it, and am OK with how things ended up. After a couple of years the sensation of a numb right side to my neck doesn't feel so unusual anymore. Range of motion is just something that you have to work on continually. While it will never be the same anymore, it's a small burden to bear to be on this side of the grass. My personal opinion is that wherever you are at the end of 2 years out from surgery is about where you are going to stay. This is based on conversations with hundreds of patients.

I was just at MDACC last week and this was discussed with me at some legth. The surgeon told me that your entire muscle structure in the back of throat, tongue or wherever you were radiated.. becomes hard from the treatment. Also, lack of saliva doesn't help. But the only sure way to improve the situation is to do the exercises.. and they gave me several. I could copy it to here if anyone wants to see them. While I have a problem with the lymphs backing up and my ears swelling.. hopefully if I start doing these exercises.. it will improve. This is prefectly normal for almost all radiation patients.. I was also seen by a speech pathologist.. that was a first! But she showed me how to put my neck all the way down as far as I can on my chest to swollow.. and if that doesn't work, move your head to the left and down and swollow. That improves your ability to get pills and harder things down and to prevent choking. She also told me that the only way to get the hardening to ease up is to use that muscle so it doesn't atrophy even more. I am eight years out of radiation. I still have trouble with choking from time to time. But I discovered that if you over use your voice, on top of the atrophy in the muscles and vocal cords.. all sorts of problems arise. If you become hoarse for more than two weeks.. you need to be seen. I went a month with it and they discovered a radiation nodule.