Can mild LE ever go away completely?

According to the BCO section it can.

I have met exactly one woman online and one offline who have had LE go away.

There are times you can not see mine, but it's not gone.

Cinnamonsmiles, based on the Nicole Stout study where she put all women in Jobst sleeves and gauntlets, if their arms increased 3% post op and only some went on to "actual" LE, there is a whole movement toward "early diagnosis can prevent LE from progressing from latency--where there is fluid but no swelling--to stage 1--with swelling"

There have been subsequent studies, and the women seemed to do better with early intervention.

On this board--or more often on another board on bc.org, some women have written that their LE is mild and got better.

I did talk to a director of a major training school and he believes that with the development of collateral (new vessels) lymphatics, swelling can be reduced. Collateral vessels develop with MLD and treatment. And maybe exercise.

So, improvement is definitely possible, and Becky Sharp who posts on this board lost a lot of weight and is now considered to have no LE swelling--so weight loss, for her, put her back into latency.

As Carol wrote: the thought that early diagnosis and early treatment can "cure" or "reverse" LE has been embraced by the NLN and other major researchers. 

I'm not planning to go to the NLN conference--but Carol and Becky will be there--and I see that there's a debate between Andrea Cheville MD of Mayo and Nicole Stout about whether early intervention can cure LE. Would love to see that one.

Some of the push toward early intervention was driven by the company that makes the bioimpedance machine: impedimed, and they gave money to researchers and put up a fake website, pretending to be a LE patient community, and their goal is to sell their machines.

But, that said, people do get better.

There is hope. And earlier treatment is far better than late treatment, as stagnant lymph fluid causes inflammation and tissue changes that often can't be reversed.

Clear as mud, right?

Kira

I'm scared to death that I am going to get lymph edema. just had auxiliary lymph node dissection two days ago and I want to go ahead and wear a sleeve. Is this jumping the gun?

Lestelle--There are others more knowledgeable than I who can advise you.  However, you should schedule an appointment with a Physical Therapist trained to deal with lymphedema and be fitted for a sleeve and gauntlet.  

Cinnamonsmiles et al.--Regarding lymphedema going away, I have told my story before.  In 2005, I developed stage II lymphedema in my hand.  Six weeks of bandaging, a new glove and sleeve and frequent manual lymphatic drainage allowed me to get to the point that I could return to wearing a glove and sleeve and gradually over the next year wore the glove and sleeve less and less.  Right now the lymphedema has disappeared but it returns in hot humid weather or if I overuse my hand.  I prefer to think of it as "intermittent." That said, I subsequently developed a mild case of truncal lymphedema and am still trying to figure out to make it disappear! 

My LE is always there but mild. To most people they can't even see it but both my LE doctor and I can. It's mostly because there is thickness in one spot.

Both my arms have increased in size but that's from weight lifting. My LE has not increased. I do wear my sleeve daily and work out.

Both my arms have increased in size but that's from weight lifting.

Iago

I am working on a project of making an exersise  DVD   for those of us with LE. I would really appreciate it if you could take a minute and PM me your weightlifting  routine and give me any deatils about it that you possibly can THX in advance !

Lestelle

The odds are in your favor so pls try not to worry too much.  You may never get LE and NEVER need a sleeve or glove.  Follow the advice on the step up speak out site and let us know how you do.

PLS NOTE:  Some post surgical swelling for  a number of weeks it totally normal.

I consider myself very lucky that mine was largely reversed, thanks to early and persistent intervention (saw PT almost weekly for about six months and wore a sleeve/ glove daily for a year) and the fantastic ladies here. However, it is not gone. You can't see it, but I can feel it and I do get swelling on and off at the top of the arm. I wear a sleeve to the gym, when it is hot, when I fly etc.

I was diagosed over two and a half years ago.  It wasn't terrible, but not considered reversible.  I wear my sleeve every day.  I only do the massage anymore if my arm feels heavy.  Every six months I get measured, and each and every time, the measurement is smaller.  Now, the LE arm is smaller than the other (dominant) arm and the area of swelling is a few inches over the elbow, but the swelling is not remarkable.  And it continues to disappear.

Wear your sleeves, ladies!  My LE therapist said at the outset, what is the harm of wearing the sleeve if you are at your desk or at home?  Take it off to go out, but wear it as much as you can because it does you good.

She was right.    

 I only do the massage anymore if my arm feels heavy.

yellowdog

Just as your LEist suggested we wear our sleeves, I am surprised by you not doing daily MLD!  ( what can it hurt ? )
I would think if you are doing so very well, this might just bring you right back to baseline !

Why not try it ?

Hi, Pkeiles, and welcome!

I'm really sorry for the reason you came here, but glad you found us. Don't apologize for taking the time to write out your question--that helps us all understand the situation better. I sure hear you on the struggle it is to cope with this. It's distressing, and figuring out how to deal with it is a steep learning curve.

I don't think you're being impatient at all. Sometimes lymphedema can be treated with just self-MLD (learned from a therapist) and compression garments, but that's when it's still Stage 0, before there is visible swelling. Once you have swelling that stays put, the standard of treatment is CDT. I sure do understand that you don't want to go through that, but since you've caught it quickly the chances are good that just a couple of weeks of CDT would be enough to bring the swelling down and allow you to keep it that way. With CDT you will notice improvement within days, not weeks, so the progress is quick and sure. Since you're not seeing the kind of reduction you need with compression garments, it's definitely time to find a therapist who can do CDT effectively.

You sure don't want to order a night garment until the swelling has been reduced as much as possible. They're expensive, so you want to be sure the swelling is gone before measuring for them. They're very helpful as a replacement for wrapping in layered bandages at night, but not so effective to use as initial treatment to reduce the "flare-up." Always best to get control first, then think about what garments you need to keep it that way.

There are other reasons why you want to do the CDT. Learning to wrap your arm effectively is an art, so it takes time to learn. But it's one of the best tools we have for dealing with flares in the future without having to keep a therapist in our pockets!

It isn't likely you've developed permanent hardening (fibrosis) in such a short time, but the garments are most likely not going to take care of reducing the swelling without the excellent help that comes from CDT.

Please plan to take really good care of you--you're worth the very best care!

In case you need a "second opinion," here's how to find the well-trained therapists near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Keep us posted, please! Gentle hugs,
Binney

When first diagnosed I was 2 cm bigger. Then at my next appt after wearing the sleeve, MLD, discontinuing sports bras, cutting my salt, and doing my daily care routine I was down to 1 cm. Now I am maintaining at about 5 mm. I've been wearing the sleeve and glove for exercise and flying and I wear the sleeve more times than not during the day or if I go out in the evening. I think bras that are tight are the biggest issue. My swelling follows along what bra I am wearing. The Spanx soft cup front close bra is the best for me and I wear it in a size so that it is sligthly loose but still supports me and gives me shaping that I need badly after my wonky reconstruction. I am vain so I didn't wear the sleeve today during an important presentation or when meeting up with old school mates earlier this week.

Hi All,

I am also newly diagnosed with mild LE in the forearm and some slight swelling in the back... though my therapist says we won't know for sure unless the LE treatment reduces the swelling.  But reading your questions when you say 1cm or 2cm swelling... do you mean by comparison to the other arm? Or by comparison to the arm that is swelling measured before swelling? My problem is that it is my dominant arm, so its naturally a bit bigger than the other side.

And to answer your question, my understanding is that once LE has developed it is always there lurking, ready to strike unless you are vigilant with self drainage massage, watching salt intake, keep well hydrated, watching strenous activity, get to know your body well and be aware of what makes it swell. etc.

It totally sucks, but I think that's the way it is. :-(

By the way dcsandpiper, I thought it was sort of interesting (in a wierd sort of way) how similar our paths have been in this whole process. That is, almost the same diagnosis, dates and treatments throughout this process. Creapy...  :-)

Everyone is different, I have responded really well to compression and really poorly to wrapping. I was able to swim 4-5 days a week last summer and that really helped.

So measurement wise I am doing really well, basically smaller on the LE arm than the dominant arm, except over the elbow. I am noticing that is a bad spot for a lot of us.

Still I can feel my arm swelling when I don't wear a sleeve. Sometimes it's a few hours, sometimes it is just 30 minutes. The good news, I guess is that if I can throw on the sleeve and glove for 20 minutes or so, I can take it back off.

(I had to do this at a dinner the other night)

I just carry the sleeve and glove in my purse and bring a really long sleeved cover-up, sometimes I can do this with no one noticing.

Drinking seems to make it immediately worse, it's almost like I have the choice of going sleeve free or having a drink but not both.

Also the paradox is... it is much easier to cheat on the sleeve in the winter, when it is much easier to wear it.

 I was able to swim 4-5 days a week last summer and that really helped.

Hi cookie

I went away for the weekend and was in the pool 30 mins at a time.  My arm felt great.

Wearing the sleeve for only 20 mins seems almost like nothing!  Honestly, I am not sure how it helps you (?)

I have not had salt in MONTHS and when I got home today, I cheated by eating my husbands fabulous chili (salty and spicy)  along with about 8 salty nacho chips. <already getting nervous!>  I'm hoping I  can flush it out, by doubling up o the water. I guess we all need to cheat a bit now and then.  Meantiume, I am seriously considering a  pool for this summer.

pfeiles

I  have actually grown to LOVE my compression camis ( though I am sure the summer will change my mind about that )
If I have  a CHOICE , all winter long, I would wear one...prefer it !  I think the trick is in finding one YOU are comfortable in.