I am still waking up with a swollen bottom lip and neck. I was told it's probably lymphedema, I've n

GregP_WN

I know that if it's in your arms or legs there are compression sleeves or stockings to wear, but have any of you had this in your head/neck, etc. like this? I don't know what could be done for it. For now, it's not a big bother, I just can't feel my bottom lip and sometimes spill a little coffee when trying to drink it in the mornings.

CASSIEME1

put a muzzle on it (LOL)

GregP_WN

That might work. I did see a picture of someone as I have been researching this, they had a full head and neck mask looking thing on. It left the eyes, nose, and mouth out but everything else from the neck up was enclosed. It would be about like taking one of those ace bandage things that are about 10 ft. long and wrapping your neck and head up.

Dkatsmeow

Actually they have compression headwer for your neck. I have one. I have lymphodema on the left side of my neck where there cut me from ear to chin. Looks like I did battle with a serial killer. It's bothersome. Sometimes it feels likes bugs crawling on the left side of my face. Other times it feels like I am being tased. Fortunately it doesn't happen very often. I have trouble turning my head. It tends to be a little stiff there. I was shown how to massage that area also to help the fluid drain. It worked out great for me also as I was having troublw with my legs swelling. They also gave me compression stocckings. The leg swelling was from a lack of protein in my dfiet. I am now on formula for the rest of my life.

MarcieB

The women I know who had issue with lymphedema were prescribed physical therapy and medical massage. But, they were experiencing pain in the arm and torso. Maybe it depends on where it is in the body? It just seems to me that your medical team should be more sensitive to this? Shall I come down there and give them a good talking to?(!)

beachbum5817

Darn, Greg. You sure don't need this on top of everything else. I am sure someone on your team will be able to suggest something that will help. After all, you can't be wasting coffee. It's too important to daily functioning. Take care.

meyati

Greg, did you have a blood test for ANGIOEDEMA? Unfortunately, it's getting where modern meds can cause that. I spent a year running to specialists, having tests. Almost a year to the day of when it started, I was finally tested for angioedema, it is medically induced angioedema. The lips, lower lip, are the main target, but it causes swelling in other places. It probably isn't, but there isn't any reason to suffer because you don't have the lab work. I saw some pics of angioedma- and it struck a chord in me, so I spent 6 months asking if it could be that. The doctor that ordered the test, did so to prove to me that I didn't have it. Well, I do have it. It looks different on a person's health, if it wants to be ornery, depending on the meds you take, the weather, etc.

cards7up

Lymph massage is probably your best treatment. This happens to many H&N patients and it's been shown to work great.

Kebohs

Yes I had that! I looked like a bullfrog. I bought a compression garment with extended chin strap made by “Jovi”. I wore it every night and slept on two pillows. I also had medical lymphedema massage therapy twice a week. It helped and it goes away with time.

GregP_WN

As of this morning, the problem hasn't gotten any worse. It's the same thing each morning, my bottom lip is swollen and sometimes numb. When I drink coffee sometimes I spill a little on me when trying to sip it because I can't feel my lip.

My lymph node in my neck is progressively getting worse as is the lesion inside my throat on the other side. I have pretty much constant pain in the left side where the lymph node is. That is a combination of lymph node, scar tissue from the multitudes of surgery I have had in my neck, and the radiation damage left from 11 years ago.

Eating has become a chore now with the pain from the lesion. Things are starting to pile up already and I haven't even started treatment. So, things will either get better or get worse from the treatment giving me a few side effects to deal with.

Cards, my neck is so jacked up from previous surgery and radiation damage that the entire thing feels like rubbing a piece of leather, you can't feel anything, and in most cases, I can't feel rubbing my neck.

Meyati, I've had enough blood drawn to have every test known. As for that specific test, I don't know. They have told me a few of the things they are testing for, and I get a report every time there is a new test result. I haven't seen that one though. I'll ask this week.

I do sleep on two pillows. As a matter of fact, last night I had a bad night trying to get to sleep. Normally I watch one of the late night shows and I'm asleep before it goes off. Last night I was having a lot of pain in the left side around the lymph node and couldn't get into a position where it didn't hurt. It was around 3 in the morning the last time I looked at the clock. I'm beat this morning and have a considerable amount of pain with it. It seems that mornings are my worst part of the day.

Kebohs

I am so sorry that you are suffering like this Greg. I hope you get relief from the pain so you can sleep. Without a decent nights sleep your whole day is ruined from the start.

GregP_WN

My doctor got me some pain meds called in so they will help me at night and in the morning. That's when I need help. The rest of the time I'm good. The treatments will hopefully start this week or next at the latest. Once that starts hopefully the tumors will start to shrink and provide some relief on their own.

robynr

I have a machine called Flexitouch Plus its byTactile Medical. It helps move lymph. I was doing the lymph massage, they told me about this. It helps me anyway. An added plus is I find it very relaxing!!