Some questions about our Lymph nodes.

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Some questions about our Lymph nodes.

Postby Cindy » Sat Dec 15, 2007 11:05 pm

I want to know and understand what happens to our lymph nodes? Do they die? Just stop working? Do they work only some? Are they plugged up and can not work? I first got lymph in my right leg and I had cellulitus several times on the right side of my stomach first. Now I have it in both legs. I have never had cellulitus on my left. I take antiboticts daily to prevent anymore infection. But still I have had cellulitus in both legs this last summer. I had a doctor tell me at the top of his lungs that lymph nodes don't die. I feel so stupid and mad and confused :oops: Please someone explain it to me so I don't :oops: myself again. Pat I first tried to read the imformation on this site but could not find a answer :roll: the problem is me not the site I am sure Thanks for any help.
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Postby patoco » Sun Dec 16, 2007 3:41 am

Hey Cindy

There are actually several things that happen with our lymphatic system/lymph nodes in lymphedema.

For example, with hereditary lymphedema like mine, I was born without some important lymph nodes in the inguinal regions.

This caused the original lymphedema. The lymphedema then was made worse from cellulitis, which caused scarring of the lymphatics (blocks lymph flow).

Now, the entire system is being destroyed by the lymphoma. Lymphoscinitgraphy recently revealed I have almost no lymph floe through the thoracic duct regions.

So, it basically is how you get lymphedema. For example, cancer patients get lymphedema several ways.

1.) Nodes are removed.

2.) Nodes are destroyed by radiation. That is they become so damaged (fried) that they can no longer function. If your doctor doesn't think lymph nodes die....does destory = die???? hmmmmmmm, say doc :?:

3.) Some types of chemo can also damage the lymph system causing it not to be able to function correctly. is interesting you have LE in both legs, but cellulitis originally in only one.

I have exactly the same thing. LE in both legs - but only the left has ever had cellulitis and it is the one the lymphoma started in. Never had a bit of problem with the right, other then it is badly swollen.

This I don't understand...especially since the tests indicate the missing lymph nodes are in both sides.

If you are still getting cellulitis, then it may be the antibiotic you're using isn't effective on the type of bacteria causing the infection. The doctor may want to try you on a different one.

Cindy, I also had that problem and had to change from augmentin to bactrim.

Don't know if all this answers your questions, if not, let me know.

Here are some new (and updated) pages that mgiht help too

Anatomy of the Lymphatic System ... tic_system

Lymph Nodes ... ymph_nodes

Pathophysiology of Lymphedema ... lymphedema

Best to ya :wink:

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Regarding Lymph nodes

Postby Cindy » Sun Dec 16, 2007 5:38 pm

Thank you Pat :D I must see this doc. Dec.26. Now I won't let him bother me again. What ever he has to say about le I will know he does not know what he is talking about. He is my heart doc. And as a heart doc. he is the tops. But he should stick with what he knows. Again thanks alot. :D
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Postby Kim » Sun Dec 16, 2007 10:05 pm

If someone could answer our questions, wouldn't it be just fantastic? Not that it would change anything, but at least to understand the why's and would just be helpful.

Three years ago I didn't have lymphedema...never heard of it. Then I had cellulitis in one leg...foot to knee. Now three years later, I have not had another infection but have full body lymphedema. It just keeps progressing. Scary to think of where this is going to take me in the future...even near future as it is progressing so rapidly. So what has happened to cause this? Was my lymph system just hanging on by a thread and the cellulitis kicked this off...eventually just overwhelming my entire system?

Like I said, it wouldn't change anything to know why, but it would be nice to have a reason for this or at least some understanding of what's happened.

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Postby patoco » Mon Dec 17, 2007 6:54 am

Hey Kim :)

It seems that lymphedema is one of those few conditions, where the patient is the one that provides most of the information. I feel like we should at least get some kind of fee for educating the very people who should already know of lymphedema. :idea:

The medical world doesn't provide answers, because frankly, they just don't know. What pi**es me of is that 99.9% of doctors just don't want to be honest enough to admit that.

To have hereditary lymphedema is frustrating enough, but, as in my case, to mix lymphoma with it has been a nightmare.

Since the lymphoma started I have actually been told
by one oncologist "I don't know about lymphedema and it isn't something I care to know about," and another doctor told me that "doctors don't like patients like you because you take them off their pedestal of "godhood. Doctors want patients they can give quick fixes too."

Thanks doc,'s only my life here at stake :evil:

Stats indicate that 30 - 40% of cancer patients will at some time come down with lymphedema. The question that is now being asked and actually studied is "why does the other 60% NOT get lymphedema?" :?: :?:

The conjecture is, that those who acquire secondary lymphedema, whether from cancer, infections etc., are people who already have an "at risk" lymphatic system.

All the is needed to set the lymphedema in motion is a triggering event. For you, that was the cellulitis.

Cellulitis "scars" the lymphatics and when you combine the at risk with the scarring...lymphedema is the result.

Lymphedema can become progressive and infact many of our members speak of it progressing...from abdomen..arms...all over.

This happens as the lymph system gradually (all over) becomes simply overloaded with what it needs to be doing. So, bit by bit it becomes non-functional.

Mine was stabile for over forty years. Then it went to the arms, then abdomen. Now it is literally all over and even my lungs now are filling with fluid.

Here's the deal with this horrid all over lymphedema.

If it is in your abdomen, the lymphatics of your intestine will dilate. The dilation causes the microscopic lymphatic valves to not be able to close properly, thus causing lymph backflow and additional swelling.

Also, (in my case) the dilation has caused my body to not be able to absorb proteins properly and I have come down with a serious protein deficiency. Protein deficiency cause additional swelling.

See the circle here? There is this consistent cause and effect that begins to take place.

The lungs are filling with fluid, because there is simply so much now in the ab, that the fluid will go anywhere it acan find a space. For me, it is the lungs.

For those of us in this position, standard LE treatment simply is not going to work or help.

I just had an all-over lymphoscintigraphy done and it clearly shows now that the lymphatics of the thoracic duct are barely functioning. Since this is the central "emptying" locale of the lymph fluid back into the cardio system (to be taken out), you can imagine what this means for me.

To literally keep me alive, I now am on strong diuretics 3x a day. While this is the last thing I would want as a LE'er, there is no other way we can keep the fluid moving.

I also am on a high protein diet in trying to correct that problem.

So far, we are barely keeping ahead of the game.

I don't know if this provides any more answers for you, if it doesn't, let me know. With all over body lymph it is critical you get the right kind of care. Once it gets out of hand, it is the most miserable experience I've ever had.

Keep truckin' - I am here for you - as we all are.

Big hug to you :!: :!:

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