Is this normal?

Sissydi

I had a uni mx 3 1/2 weeks ago with insertion of a te. I also had 21 nodes removed. Now the arm on that side looks normal, but is achy and heavy. Should I be concerned this could be lymphedemia?

ma111

Yes and you may need antibiotics, call your surgeon today.

Binney4

Sissy, that aching and feeling of heaviness is often the first clue we have that we're dealing with lymphedema. It can happen even before there's any visible or measurable swelling, as excess lymph fluid begins to accumulate in the tissues. Any doctor on your team can give you a referral for an evaluation by a well-trained lymphedema therapist. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Some doctors are quicker to recognize this and give a referral than others, but it's important to act promptly, as treating it at this very early stage will mean halting progression, a much easier time controlling it on-going, and a much lower risk of serious infection.

Just a note: lymphedema is not treated with antibiotics, but the cellulitis infections sometimes associated with it are. If you have any reddened areas on your arm, warmth to the touch, pain or rapid new swelling or flu-like symptoms, it's an emergency and you need to get to your doctor or ER at once. Otherwise, do bring this to your doctor's attention as soon as possible and ask for a referral for lymphedema evaluation.

Hope that helps! Let us know how it goes. Be well,
Binney

Kicks

Contact one of your Drs. Explain what you are feeling and ask for a referral to a Certified Lymphedemologist - not some PT that wants to think they are a specialist. As was said if you are having redness/heat/pain/fever/etc. see a DR - you may have cellulitis which needs medial intervention ASAP. Lymphedema doesn't need medical (as in meds) intervention - it needs 'treament' to try to minimize extent. The sooner the better - it doesn't 'majikly' go away - it will progress without care.



Good luck - dealing with LE is not the greatest thing to do but doable.

Binney4

Just to sort of clarify, there are a few (only a handful) of Lymphologists in the U.S. -- that is, doctors who are specialists in the lymph system. There is no recognized M.D. specialty in Lymphology here, so these few doctors are specialists in other fields who also deal with conditions of the lymph system. Someday -- hopefully soon -- there WILL be a Lymphology specialty, because the lymph system is (fortunately!) starting to be recognized as a legitimate field of study. ('Bout time!)

There are PTs and OTs who have taken special training in lymphedema beyond their certification as PTs and OTs, some more and some less. What you're looking for is a therapist who has had at least 135 hours of specifically lymphedema training. The page I posted above explains about that, and about how to find one near you. Any PT or OT is legally allowed to treat LE, but most have not taken special training. Regular PT training is certainly rigorous, but it doesn't teach the in-depth understanding of the lymph system and how to deal with us lymphers, so it pays to find one who's fully trained.

Kicks, it DOES seem like it takes a lot of good luck to get good lymphedema care, doesn't it! Glad you're finding it doable -- good for you!

Be well,
Binney

Sissydi

Thank you. No redness or heat, just a dull, achiness that feels like swelling, but doesn't look like it. My fingers tingle a tiny bit; it comes and goes. I am watching for fever, nothing in that regard....so I will bring this up to my doc Tuesday...thank you for the good advice!

puce

Sissydi, thanks for starting this tread.

I had a SLN done and only 2 nodes removed.  Over the last 2-3 weeks, the inside of my arm feels tight. I decided to wear a sleave to workout and have seen that when I take it off, I am swelled a little bit, can see a ring where the elastic is.  You gals think it's lymphadema?  My PT said to get the sleeve because better safe than sorry, my BS said no risk with SLN.  I'm flying on Wednesday and am worried.  I don't have a hand piece either, should I get one ASAP?

No redness, no fever.

kira66715

Puce, sometimes sleeves leave indentations--do you notice actual swelling? I does sound like you could use an evaluation by a LE therapist--and not all PT's are trained in LE.

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

I got LE after just a SNB, and so did a number of other women on this board.

If you use the sleeve to fly, you should have compression for your hand:

http://lymphedivas.com/lymphedema/gauntletandsleeve/

I know there's been a lot of cellulitis here lately, but most LE doesn't show up as an infection, but as swelling, tightness, aching, tingling.

No one can tell you if it's LE, but an evaluation will help--and if it's not--and I hope it's not--you'll get some baseline measurements and education on how to avoid LE.

Kira

puce

Thanks Kira.

I noticed swelling on the inside of my wrist.  I guess I should go back and ask her to measure me again.  I'll go buy the gauntlet.