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Neck Lymphedema

PostPosted: Tue Oct 24, 2006 3:18 pm
by Wendie
Hello - I am new here. I just came back from Northwestern in Chicago were I was supposed to have a lymphoscintigraphy to determine if I have lymphedema in the deep cervial nodes on the left side of my neck. (I have been dealing with left neck swelling from below my ear down over my collar bone and into my underarm for over two years which gets worse when I am sick, if I get an insect bite (anywhere on my body), etc. I have been getting MLD (non-Vodder...) by a massage therpist which seems to help temporarily. When I do not get regular MLD, I get low-grade fevers and feel tired and sometimes flu-like). My internist scheduled the test for me after I begged him to because I read that this would be the only was to know for sure that it is lymphedema. CT and ultrasound show no mass, just weird fluid in the tissues. Well, when I got there, the doctor and techs all looked at me like I was nuts (which I'm getting used to since my internist looks at me the same way). They said they never heard of lymphedema in the neck of a person who doesn't have cancer (which I don' least don't think I do). So they sent me home. I am so frustrated. Can anyone tell me if there is such a thing as neck lymphedema and how it can be diagnosed and treated? I am mad, sad, frustrated, embarrased, and everything in between. Sorry this is long. I would greatly appreciate any and all comments. Thanks - Wendie :cry:

PostPosted: Tue Oct 24, 2006 3:44 pm
by silkie
Hi Wendie

There is Certainly neck lymphoedema
I have primary lymph that is a genetic problem not cancer

and it is no suprise that some doctors think lymphedema can only
occur when nodes are removed

there is a section on neck lymphedema here ... e_neck.htm

click on the link and it should take you to the page of info on here

Have a read of it and please any questions come back to us

Good to have you with us Wendi



PostPosted: Tue Oct 24, 2006 8:03 pm
by patoco
Hi Wendie

Wanted to give you a super welcome to our family here and hope that the page Silkie referred you to had some helpful info.

I hate to rain lymph on your doctors assessment of neck lymphedema, but there is such a thing...totally apart from cancer. We even have a little boy in our children's group with primary lymphedema of the head and neck.

Also, I think a lymphoscintigraphy is totally appropriate and in order.

It can be treated by a certified lymphedema therapist and there should be bandaging and/or compression type garments that they would be able to recommend.

Let me know if you need help in those and I'll see what I can find.

Pat O

Thanks and Questions!

PostPosted: Wed Oct 25, 2006 9:36 am
by Wendie
Thank you for the info on neck edema. After I posted my first message, my doctor called back and we are supposed to re-schedule the lymphoscintigraphy. I also made an appointment to see a vascular surgeon who supposedly has "Seen it all". It's just so frustrating to see and talk to these doctors who should know about these things and to have them act as if I am making it all up!

I don't know how I developed the lymphedema. I did have a horrible tooth abcess two years ago in a lower left molar (right before the swelling started) but it has been treated and is completely better.

Patco - my massage therapist and Chiropractor use Kineso tape cut into strips that look like an octopus. They put the "head of the octopus" near my right underarm and them spread the "tentacles" over my upper chest to the area of swelling in in my left lower neck to pull the lymphatic fluid from the nodes that aren't working to those that are. I think it does work to a degree, but the neck seems to be such a tricky area because you can't really compress it without choking. Have you hear of any other methods that have worked on neck lymphedema?

One last question (Sorry for so many questions but I cannot tell you how freeing it is to actually "speak" to people who believe me AND have information on lymphedema...). Do you know if lyphedema can "spread" to other parts of the body? When I first noticed the swelling, it was just in my neck. Then I noticed it coming over my shoulder muscles to both the back and over my collar bone. Then, about 2 months ago, my abdomen started to steadily increase in size (6 inches in 4 months and 14 pounds) with no increase in food consumption or decrease in exercise. It is not "Soft" to the touch like fat would be (even though I am sure I am overweight and have fat there!) It feels like touching a hard boiled egg, it that makes any sense.

Also, I saw in another posting someone asking about hives. I have "unexplained" urticaria (hives) now, as well. It started back in May and I wake up with it everyday. They decrease in size and number as the day wears on. I did not know that lymphedema could be associated with that. It's amazing what you can learn here. Thank goodness for you and this site.


PostPosted: Wed Oct 25, 2006 8:22 pm
by patoco
Hi Ya Wendie :)

I heard a lot of positive things from lymphers about Kinesiotaping. Glad to hear they the therapist is at least trying it.

It is true you have to be incredibly carefuly with the neck (no choking allowed), but you can actually do a vey very gentle massage that can help move the fluids.

Wendie, the way you describe the abdominal swelling is a bulls-eye description of lymphedema. An abdomen that is fat is going to be soft and pliable. An ab that is filled with fuild is going to be exactly as you said...firm...even very hard, depending on the extent of the fluid backup.

Really can make you feel totally miserable too. I would talk to you therapist and make sure that you get shoulder/ab MLD. Start now before it gets too bad.

What it sounds like is that slowly but surely your lymphatic system is getting overloaded, one area at a time. If you can get a jump start,on treating it, it will really help.

hug to ya!

Pat O

PostPosted: Sun Oct 29, 2006 2:40 am
by silkie
Hi Wendie Hiya Pat

Wendie the kinesio i recentlystarted using not only on ly upper legs and arm but my shoulders to. I love it

Althoug on the knee to thigh it does not work as effeciantly as the supports it does however enable me to wear knee high supports and walk a lot better as the supports make me walk like frankenstein and
i have a problem with mobility they seemed to make the task a great deal harder
Now i can walk a little better and further thats a plus
the kinesio does keep my upper leg and knee from swelling and going hard it keeps my skin and flesh soft and pliant and i have no solid build up

My arm it is fantastic for carpol tunnelling i very rarely get pain like i did

now the shoulder like your neck Wendie an octypus the head is as near to the underarm node as possible because of sweating and the sdhesive not sticking then i take the legs up to either side of the spine in the neck
this is done on the back
it helps a lot

I suddenly had to stop using as i got a reation to the sdhesive after all this time but i put a test piece of the kinsio on skin occasionally to see if it was just a bad skin week. im trying it again this week as there now is no reaction wish me luck i really miss it




PostPosted: Thu Nov 02, 2006 2:02 pm
by Wendie
Good luck, Silkie...I do know the feeling of relief in the tissues when the Kinesio Tape is working! I, too, have had a couple reactions (urticaria and angioedema) under the tape if I am having an especially reactive week. Let me know how it's going for you!