To vent, or not to vent. That is the question. Answer?...a healthy little vent:

aaarrgghh, just when I was doing soooo good post tx with toxic spit subsiding, taste buds returning, eating again (PEG out), feeling a bit of energy return, stubbornly following my PT regime (well, mostly!) and looking fwd to continued progress over the summer then...WALLOP! I wake up and welcome the Lord of Lymphedema to my already sore and stiff neck/jawline (from neck dissection/radiation).

So, to backtrack, thanks for all the previous posts on this Lymphedema subject: I am doing the gentle massage and the sleeping at a raised angle. I am aware of the compression garments. My question is have they or anything else not mentioned actually worked for reducing/eradicating this pesky swelling condition? I know there is no cure but hopefully someone has some good tips/advice.

The mighty Cleveland Clinic clearly have not taken this side effect seriously as only now is there some direction/traction among PT/OTs to deal with it. I hope I'm wrong but there seems to be no-one with Head and Neck Lymphedema experience available! Has anyone had any joy with University Hospitals in NE Ohio on this?

As fellow sufferers will know, mornings are absolutely awful...as if dry mouth didn't wake me often enough! Vent over. I shall stay positive and keep my chin(s) up and wish you all a similarly speedy recovery.

Hang in there...it will get better! It was easy here to find someone and it helped a lot that my MO had a wife that did this much closer to home too! Just look at that list of positive things checked off. This will be too.

Ed

Just a little answer lol, sorry to hear, but it's very common, especially when the lymph nodes are removed or compromised from radiation, infection, illnesses, due to the lymphatics trying to drain downward toward heart level. It will go down somewhat, like a clogged drain, over time, and may comeback when the fluids gets built up ot from too many toxins, illness, infection, etc. I have a slight turkey neck, which went down significantly, but I'm almost 3 years out from a RND, and had two more since. Basically the lymphs are the sewer system for lymphatic fluids. Be careful with massage, until properly shown, since they have to be done with a certain pressure, motion, direction. They have lymphatic Masssge Therapist's experienced in this. Accupuncture helps some, so does light exercise to get the lymphs flowing, like swimming or walking while swinging arms above the heart, a trampoline, sauna, sweating, but like everything, check with your doctor before doing, and to rule out any recurrence or new cancer. It may be worse in the morning due to all the fluids pooling while laying down, so sleeping on an incline helps. Diet may also factor if you eat too many preservatives, chemical foods, and even some medications. I would not doub't that the gravitational pull of the moon has an effect on many fluids at night, like illnesses seeming to occur at night for unknown reasons, and heard that many moons ago. Anyway, I have not used any compress bangages nor any other treatments. There is one being done in Nova Scotia, Canada with liposuction for HNC lymphdemia.

Good luck.

I was having edema in my legs and a question I was asked was whether I drink water just before going to bed. I said I start winding down before bed and he said to drink at least 8 oz before bed but try and go to the bathroom 1-2 times before bed. He explained that the platinum chemos can keep causing problems with the kidneys and many people go to bed dehydrated and it causes fluid to pool throughout the body. Accumulations of fluid tend to occur around the heart, organs and anywhere you have trauma. I started drinking water before bed and have had swelling on one foot one time since September.

We call it TURKEY NECK. Because we have a name for it you can understand it's very common. I looked like a rabbit with their dollop for well over a year. It, like just about everything else that goes wrong with us due to this Tx, will improve but it does take a great deal of time.

Hi there... paul is right... have a lymphatic massage specialist work on your neck. I would wait a little. Until perhaps a few more weeks. I waited three months before going and it helped immensely. They help rebuild pathways for your fluid to drain. I rarely am swollen now, and if I am it's temporary and usually how I slept the night before... ;o)

common problem--yes, I agree with waiting 3 month. Important to find someone who is knowledgeable about head and neck lymphadema massage in particular. MD. Anderson does trainings on head and neck, my massage therapists had gone to a couple of them and there is some kind of manual, It is not too complicated, they teach you how and then you do it on yourself every night. It helped, but took a while for new pathways to form. New thing for lymph massage that I heard of is the use of "K" tape (Kinesiology), and your PT might know about this. Keep asking!

Thanks for all replies. Nothing has changed for the better, in fact the tightness/pain is getting worse. I wonder if the neck dissection, tongue reconstruction and then radiation all on the same area is why I have it so bad. Everything is tightening up, sleeping is a disaster (up 3 or 4 times easily), eating is getting tough and I have constant ear/headache. My 600mg ibuprofen and 10mg oxycodone just aint doing it anymore! Tried a 30mg morphine last night and it did nothing.

lol, the best medicine is distraction...even typing this helps a little NOT to be directly thinking about the discomfort. Talk about a rock and a hard place: stretching my neck and jaw hurts right now but without facing that pain I will probably get worse, much worse!

I am curious why some of you reckon to wait 3 months or so to begin lymph massage? I have been doing it at home and it seems to offer some relief... whether that is fluid draining or it is simply the overall feel-good effect of massage I don't know. Certainly there is no visible change to the puffiness but I shall take relief in any shape or form!

I found an older thread recommending Kinesio taping to reduce swelling. Yes, yes I too am suspicious of such a thing but with very little patience and no other remedy in sight the prospect of trying is getting closer. Anyone else tried this? Heck, I shall even try the glass of water trick mentioned above!

I stated in the original post there seems to be very little hands-on experience in NE Ohio to deal with this. My PT and OTs are at least honest in this regard. This makes me even more thankful for forums like this, thank you all.

Sorry to hear of your continued troubles. Have they tried a Fenynal patch, which, and if needed combining it with another opioid, which I did with oxycodene. Fetynal comes in different dosage, 23.5, 25, I think 50, and I know 100mg. There are also breakthrough meds that act quickly. Sometimes they have to find the right meds, dosage for each patients, who react differently.

Distraction is one way to help pain, music too, mediation.

Maybe someone said three months since this is when you usually get a post treatment scan. 1. you do not want to be massaging your neck if there is still active cancer, which can cause rupture or ECE in the node. 2. Can this cause uptake in the PET/CT as inflammation, definitely two days before it can, and no exercise should be done two days prior, plus a low carb diet 24 hours before the scan, and no food, water, medications after midnight. Ask your doctor(s) what they advise.

Good luck, and hope you find relief.

So, is it wait three months from when the symptoms arise or from end of treatment before you sought physical therapy/massage?

Glad to read this thread as I awoke this morning for the first time with a stiffer neck then usual and a tightness in my jawline and neck that was pretty uncomfortable, especially when moving my head around.

Well... upon looking in the mirror, I saw much to my horror, the beginnings of the infamous turkey neck! AAAAhhhhhh!!!!

I thought I had evaded this cursed demon of H&N fame but he has found me!

I have a compression bandage that was made for me just in case and they taught Marcia and I the technique for massage (complete with diagrams). I'd like to have a refresher course before I dive in.


"T"

I am familiar with the Fentanyl patch from after surgery pain - still have a bunch left over. I am however reluctant to start as these patches were involved in my pain medication overdose while admitted previously. Long story short, I was given too many narcotics one night, could not be woken, had an AMET team rushed in to revive me via that scary strong reversing drug Narcan. Anyone who has been "narcanned" will know what I mean, not pretty.

The 3 month theory makes sense altho none of the Drs etc I see have ever mentioned NOT to massage out the stiffness or swelling. Speaking of PT, a fellow patient revealed what worked for her in this regard was Myofascial Therapy where I guess they really stretched out the affected neck tissue.

In other news I did manage to get taped up yesterday so we shall see if this Kinesio thing works. Best I can describe is on the main site (left jaw/cheek) I have a spiders web pattern of tape. Then, on both left and right sides from jawline down to beneath collar bone several strips running up/down. The bottom end of these are then connected by several strips running horizontally. Lastly there are a few strips running up/down from the back of my neck (hairline) to shoulder blade, left side only.

So far it is not uncomfortable just odd looking. Will advise in a few days how it has fared.

Ok, back to the early morning golf on tv, a pleasant benefit of not sleeping so well!

End of treatment. I researched this a bit before I committed to having massage. I even looked into whether there were increases in recurrences if you had lymphatic massage. So I waited got a clear scan the did what I had to to get rid of the swelling.

Tks Cheryl. Can you expand plse on what you did to get rid of the swelling - was it just massage and how did you cope with it prior to the three month mark?

Thanks for the info Cheryl. I have an appointment on Monday at Johns Hopkins with my ENT/Surgeon. I'll cruise by PT and see if Marcia and I can get a quick refresher on it.

"T"

Btw no verdict on the Kinesio: tape was on for 3 days and while I did not get any better I also did not get worse (which seems to be the norm), so its hard to tell.

The last two weeks have been tough. Each morning seems worse than the last. I am not sure anything can move fluid thru the neck dissection scar area which, after radiation, is rock hard. My speech and eating/swallowing have been adversely affected also. I fear another feeding tube is on the horizon. Everything is just seizing up, regardless of stretches and massages. Compression masks/chin and cheek bandaging offer visual improvement for a few hrs only; no relief from the pain. Actually I wonder if the swelling can be made worse on the inside from the compression on the outside? Certainly my tongue and throat seem to suffer more when I wear the nightly mask/strap.

Apologies, I am done with this topic....so fed up with this damn side effect. Time will take care of it. Eventually.

Shortconnery,

I am at UH Siedmen Cancer Centor, Mentor campus. IMO they don't know anything either. I have pain just abouve where they removed a node in my neck. It is numb on the skin but hurts when you push it. I told them it feels beter when you rub and/or strech it.

Some doc's blame radiation, other surgry, So I ask the doc's what to do, they say "strech and rub it"

Shortconnery, I think it takes more time, if you just had surgery, treatment this year. Hopefully, things will get better.

Fluid cannot move through the scar tissue - new pathways must be built around it. Keep up with the massage - it takes quite a while (I went weekly for 6 months and did my own massage daily.) make sure your massage therapist has been trained in lymphatic massage. Rome was NoT built in a day and healing takes time patience!