Mild Lymphedema

[europa]

I'm hoping someone has experienced this because I'm sure there is something I can do.

I had 9 lymph nodes removed during my surgery and really haven't had any issues except for once a year. Not sure if it's the change in weather or what, but once a year my arm tightens up and it hurts. From everything I've read it's lymphedema. I can definitely still do all sorts of things but it's definitely very soar and I can see veining like spider veins near my elbow.

Is there a protocol to go by? Exercises? I have been doing manual lymph drainage and it has helped a little but need to see if there is something that works better.

Muchas gracias chicas

[Carol Ann]

Hi Europa, I have mild lymphedema, my oncologist gave me a referral to the rehab center -- I received therapy, learned how to bandage my arm, etc.

My insurance paid for compression sleeves and a flexitouch pump, I spend an hour on it every day now to help keep the swelling to a minimum. I had nodes removed on both sides (see my signature).

Lymphedema can get progressively worse so the sooner you can get in to see a lymphedema specialist, the better. They will measure your arm for the compression garments, give you exercises to do, etc.

You can find exercises on the internet, but if you can see a specialist, that is best. Plus I was told to wear my compression sleeves and gloves whenever I exercise, so that's a consideration too.

Carol Ann

[jaykay]

Hi Europa,

I don't have lymphedema but I did have a consult with a lymphedema specialist during radiation (they also zapped my lymphs).

I do have a compression sleeve I wear when I fly, which is pretty often (for business). I don't wear it for anything else.

As Carol Ann stated, I would find a certified lymphedema specialist. Your hospital/onc should be able to recommend one.

Best
Janis

[BonnieR]

Europa, I have very mild Lymphedema too. It can be affected by hot weather and sun exposure. Once I got a bit of sunburn and it caused my arm to react. We need to avoid hot tubs or saunas too
Periodically I would wear a sleeve when my arm started feeling "funny" or heavy. But almost never now. Unless flying. If I remember
I agree with the others that you should seek out a professional. You could do more damage if not massaged correctly
Good luck. Keep the fsith

[RedHen]

Hi - I have lymphedema and just finished a course of treatment with a certified LE therapist. I bandage at night, wear a sleeve in the daytime and do exercises and self massage every day. I'm sure everything has helped, but the swelling has not gone away or decreased very much. I'm currently undergoing radiation that may make things worse, so I'm being very careful about the care of my arm and diligent about exercise and massage. At this point, I'll be glad if I can keep the size of my arm from increasing from its present dimensions. My expectations have been lowered, and that's disappointing, but I'm grateful that it hasn't gotten worse - so far.

One thing I have learned from experience and research is that much more research is needed in this area. It's hard to find anyone, including doctors, who is genuinely knowledgeable on the subject. There's a lot of misinformation out there.

Best wishes. Lynne

[BonnieR]

Boy, that's the truth Lynne. This is one area of cancer treatment that doesn't seem to have improved much. And the old wives tales and misinformation are plentiful
I'm glad you found some capable therapy
Keep the faith

[LymphActivist]

Hi Europa,
Yes, there is an internationally-accepted protocol for lymphedema called (variously) complex/complete decongestive therapy (CDT). It comprises: manual lymph drainage (MLD); compression (bandages, garments, devices); specific decongestive exercises while under compression; and meticulous skin care. Generally it starts with 2-3 weeks of intensive care by a specially-trained and certified lymphedema therapist (daily MLD, bandaging, exercises, fitting for compression garment, and patient education on home maintenance) followed by home maintenance by the patient or aide (self-MLD, bandaging and/or garment wear, day and night as required, exercises, skin care).

This protocol may appear excessive, but recent research is starting to document that early attention to prevent swelling delays or prevents permanent tissue changes (fibrosis/hardening), fat deposits and inflammation. Early use of elastic compression and early MLD have been shown to prevent lymphedema [Stout, Zimmermann].

[europa]

Thank you!
I went to see someone about MLD and it works! Just a few days ago I worked out without my sleeve and boom, the next day my arm was a bit tight . So I slept with my sleeve on, took some aspirin and in the morning I did my MLD. Wore my sleeve all day and repeated the MLD in the evening. The next day my arm was back to normal. I just hope that this is as bad as it gets, because it's very manageable.

[BonnieR]

Somewhere along the line I was told not to sleep in the sleeve. But you nay have been taught differently. Just an FYI
Keep the faith

[LymphActivist]

It is very empowering when you have the tools! Use them to not allow the lymphedema to get ahead of you. My wife Pearl is a 22-year survivor of breast cancer who has had lymphedema from the day one. She has been managing it for 16 years now, and when she removes her bandages you cannot tell which arm has the lymphedema. But it takes 1-2 hours out of our lives every day for simple MLD, exercises, bandaging and washing the sleeves and bandages. We think it's worth it.

[LymphActivist]

Europa: BonnieR is correct. It is better not to wear an elastic circular knit compression sleeve when your arm is not active, like sitting watching TV, sitting on a plane or sleeping. The resting pressure impedes proper transport of lymph in the superficial lymphatics. Better look into a non-elastic compression sleeve or device for nightime such as a JoViPAC, Tribute, Reid Sleeve, ArmAssist, etc. or see if you can learn to self-bandage or have someone bandage you.

[europa]

Thank you! Good to know.

[jaykay]

I'm going to disagree on wearing a sleeve when flying. I went to see a lymphedema specialist during radiation for a consult and to get measured and fitted for a sleeve. Both she and the radiation oncologist told me that I should always wear my sleeve when I fly due to the changes in cabin/air pressure on a plane when flying. That is the only time I wear my sleeve

Janis

[RedHen]

To LymphActivist: When does your wife wear a compression sleeve? Or does she rely on the bandage exclusively? I've been told to wear a sleeve during the day, regardless of what I was doing, and to bandage at night. If you have a source of information that I could tap into, I would very much appreciate the direction. I've learned more from your posts than from any other source so far - including the therapists. I knew there had to be a theory behind moving the fluid, and I've made a few discoveries on my own, but my arms never look the same. I've been lucky so far in that the swelling has not been too great, but I feel I should be able to do more. One of the places I went, which was at the hospital where I had my surgery, they relied mostly on pumps. My feeling was that this was ineffectual and mainly for show. As soon as my insurance ran out, I was pronounced "cured" or whatever though there had been no real change.

[LymphActivist]

Hello RedHen: Pearl wears a compression sleeve and glove every day. She choses a compression class 1 or 2 elastic circular-knit sleeve when she is in minimum discomfort, and a custom flat-knit sleeve when she requires more heavy duty compression, or when the elastic sleeve causes redness at the inner elbow. I bandage her most nights after she does self-MLD. Sometimes, when she does not require the bandaging (which we feel is the gold standard of compression) she will wear a strapped compression sleeve or a quilted garment.

As for comments and information on insurance, reimbursement and appeals you might want to go to our web site www.lymphactivist.org

For reliable information on lymphedema for the patient you must be very careful. A couple of good web sites are :
http://www.stepup-speakout.org and http://www.lymphnotes.com/

[Bellaokc]

Great thread! I have mild lymphedema too and very few sources of info! :-)

[BonnieR]

I didn't say to not wear a sleeve when flying. I just said that I was told not to wear it to bed. I believe there are different levels , types and purposes for sleeves. I believe there are types for overnight
I wear an elastic sleeve to fly
Keep the faith

[DogLover]

I was also told not to wear the compressions sleeve at night. That is what I was told by the supply company therapist who measured me for my compressions sleeve. However, a previous lymphedema therapist told me I should wear my compression sleeve to bed. I have also been told not to lift over 15 pounds with this arm and then told that is no longer the latest treatment for lymphedema. It seems challenging to get good, evidenced based information.

I am a bit prostrated because I only had 3 nodes removed, and they were all negative. I still wound up with this complication. Ugh.

I have just been measured for a custom compression sleeve and glove that I will wear during the day, and a I will be getting a sleeve to wear at night that looks like an oven mitt. I is a big mitt that will go all the way up to my arm pit and this is what I will sleep in.

I also just got a compression bra! It is a bra that has a pouch for the compression pad. It is really working well to soften the tissue and hopefully will help to reduce the size of the breast on this side. (I obviously had a lumpectomy). The breast with the lumpectomy is AT LEAST 2 sizes larger than the other and I can't find a bra that fits on both sides. I am tired of wearing sports bras. I am hoping that this will reduce the breast to a point where I can wear a normal bra.

I am almost one year out from diagnosis. I have been asking about my enlarged breast most of that time. I have even asked my surgeon and oncologist about possible breast reduction surgery. They said the lymphedema would just come back. I back. I have asked 3 lymphedema specialists (see different people on different days) who are certified as lymphedema specialists about my enlarged breast. After all this it is the supply company that tells me about this product that is available (compression bra). It is hard to find a place to get our answers when we have this diagnosis. We just have to keep asking!

[RedHen]

I relate to the difficulty you're having and the different approaches to treatment. It would be great if everyone could agree on a Best Practice! I have a lead on a therapist in Knoxville and will see her on Monday. I am hopeful for the first time in a while. My arm has begun to hurt and develop some hard areas, so I am concerned.

Good luck with the new outfits! LynneR

[DogLover]

Wishing you good luck with the new therapist near Knoxville. Yes, I am looking forward to the new outfits. LOL