Lymphedema Treatment 101 - Questions from a Newbie

You should wear a glove, yes. My lymphedema is mild, and after wearing a sleeve for about 6 months with frequent PT I am now able to go about most activities without the sleeve and I do not go to PT regularly anymore either.

However, I still need the sleeve for flying, the gym and any other heavy activity.  Also, the lymphedema does act up every so often and then I have to deal with it, rest, fluids, MLD etc. In fact, it has been annoying the last 2-3 days. Nothing dire, but my armpits feel funky.

So, it is, unfortunately, a chronic problem, but one that can be managed and, in many cases, alleviated greatly. 

guitarhero, some of the PT's use tubigrip, but it's just a stop gap IMO.

The full treatment toolbox consists of : 1)manual lymphatic drainage--by a therapist and teach you home techniques,2) bandaging if limb volume reduction is needed, for night time swelling, and to have in the tool box to manage flares, 3)official compression garments for daytime use--with hand swelling, that would be a sleeve and glove, and 4) therapeutic exercises.

It's called complete decongestive therapy, or CDT.

Far too many therapists take short cuts and don't realize that lymphedema is a clinical diagnosis and there is no standard measurement that defines severity, and the greatest risk for severe lymphedema, is having mild lymphedema.

I would go back to that therapist, or check out her credentials and go to a qualified therapist (135 hours of training, although that's no guarantee of excellence...)

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

And insist on complete treatment--which includes addressing night time swelling, learning how to bandage, and formal, official, well fitted compression garments:

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

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

I'd go armed with the official NLN position paper on treatment:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Far too many LE therapists, think that to justify insurance coverage, you have to have a 2 cm increase in size or a 10% volume increase, and that is not scientifically proven, and any swelling deserves the full evaluation: you may not need to be in bandages to reduce limb volume, but swelling isn't "just swelling", lymph fluid in the tissues causes inflammation and fibrosis and shouldn't be allowed to happen night after night.

Please let us know how you make out.

Kira

I really recommend learning to wrap before you NEED to wrap. I brought a camera and took notes. If you get a flare in swelling a compression sleeve will not help " move the fluid out", but wrapping by its nature will help this process. It is a tool to try to maintain things if you puff, and it is confidence building because it is something concrete you can do to manage the condition. Also it takes a long while where I live to get a slot for LE PT-----so I can wrap when waiting for a PT session and try to get a hold of things till MLD.

Keep a set of bandages on hand just in case.

Michelle, can you hear me muttering from afar?  This is a ridiculous example of what is so wrong with LE care access!  Looking for a qualified therapist can feel like going to Vegas...you drop your coin in the slot and if you are very, very lucky, all your fruits line up and you get rewarded with help instead of harm.

We should not have to find quality therapists by the trial-and-error method.  I am so sorry this has happened to you.  The right therapist will get you in a sleeve/glove or sleeve/gauntlet combination that fits, and he/she will provide the rest of the complete decongestive therapy needed to get that swelling down and keep it down, as Kira described.

If I sigh any louder, I'll rattle the windows...

Best of luck in your search for a better therapist.

Carol

Michelle, I've worn tubigrip a lot after orthopedic surgeries and injuries.  It's pretty darn convenient but it is NOTHING like a sleeve that fits well.  

Insurance coverage of treatment of lymphedema caused by breast cancer treatment is mandated by law.   If your insurance would cover a mastectomy, they have to cover treatment of lymphedema.  I do pay a copay for my sleeves, but nothing has been $1000 out of pocket.  

I used all the links I could find through Step-Up, Speak-Out and couldn't find a therapist in my dinky city who took my insurance other than the one I was seeing.  I paid out of pocket to see someone for a second opinion, just one visit, and that was helpful.  

Also, if your hand is swelling with what you are wearing at night, it may actually make sense to stop wearing it while you find a better therapist.  Regular compression sleeves shouldn't be worn at night because without all the movements that we do without thinking about it while awake fluid can get trapped.  I found that out the hard way.  Elevation is something you can do at night that shouldn't make it worse while you wait to be seen.  

Good luck. 

What is a wrapping regime?

Compression gloves generally are not recommended to wear at night. She should teach you to wrap. There are also special padded quilted night garments which can help. If you have hand swelling you should wear glove not gauntlet during the day. Kinesiotape on the hand also might help. Sounds like you need a new lymphedema therapist. I will bump some threads addressing the above.

Gloves do not have to cover the entire fingers. My gloves only go to the first joint (not including the joint) and work great. I do have a gauntlet that I use for short times for some activities but it isn't as good for long periods of time. I wear my glove basically all the time I am 'up'. If I am doing 'something' that would get it wet, I either pull it off for a few minutes or pull on a waterproof glove over. When I'm doing 'something' outdoors that I would normally wear my leather work gloves - I just put them over glove. Same with my winter gloves.

When I get my 2 new gloves/sleeves every 6 months, I rotate the older ones into my boxes (tool boxes in each vehicle/tack boxes/fishing boxes/etc.) so that if I' m out somewhere and need to do something that could get my newest gloves/sleeves dirty/stained from all sorts of things, I just slip into the older ones so the stain doesn't really matter if it doesn't come out in the wash. That keeps the new ones looking nice - not stained up though clean.

I have to have low compression custom gloves for my hand. Higher level compression makes it puff up like a balloon rapidly (1/2 hr). I do not find my gloves/sleeeves 'restrictive' - don't think about them but they are the right compression level for me and fit me right.

Day garments (active) and night garments (passive) work on different principles. Day garments are designed to work when being active (day time). Night garments are designed to work when passive (not active/sleeping).

I have a complicated ..Very complicated case and I am extremly scared ...I got diagnosed with Non -Hodgkins Lymphoma in 2011 August. The chemo I went thru and the Cancer BOTH attacked my digestive system so badly they ended up removing ALL of my Large Intestine 100 % , My Gallbladder, My Appendix , my Colon & My Anus. Now after two years of healing it took from that. They found a Lump in my Right axillary Region so took ALL of right axillary Lymphnodes out .....I had severe drainage problems for like 6 weeks , They left the drain in going home and had to change it out a few times and painfully manually drain a few times ( very Painfull but fluids kept building up under skin ) So had to.

Finally that healed and Ivebeen in Remission since after two years of Rituxan after chemo treatments and after almost dying before big surgury from Renal End Failure so then lived out of hosp by going for hydration treatments twice weekly , But now hydrate myself by drinking 1 & 1/2 gallons of Lemonaide a day. I have to or kidneys will fail again because your large intestine is what gives you fluids from food. But since I dont have one at all and they redirected my small intestine to normal exit I can barely eat anything or Id be in bathroom non stop because list of what I can eat is so small its ridiculous. All other foods will give me diareha .....Im on massive amts of diareha meds daily is all they can do. So Nutrition is almost non existant for me , I am anemic , They have me on energy pills due to malabsorbtion of food.

And just got dioagnosed with Lymphedema....Now from what I read so far nutrition is a big part of treatment ....Well that wont / cant work for me because I can only eat such a small list of items as it is

Im so scared because then the surgery ussually they go to from what Ive read is moving Lymphnodes from one area to another to replace blockages or blocked ones ....Well since Non Hodgkins Lymphoma is Cancer of The Lymphatic system and Cancer is thruout my entire system ......What are my chances then or options for treating the Lymphedema ????????????

Pricilla, welcome to the discussion boards here at BreastCancer.org. I'm so sorry for the reasons that brought you here, but glad you found us.

Lymphedema is a scary diagnosis for most of us--it's chronic, and it's hard to get good information about it, and sometimes even to find a well-qualified lymphedema therapist to treat it.

I'm not sure where you heard that diet was a significant part of lymphedema treatment. It helps some of us if we avoid salt or alcohol, but aside from that there's little about diet that can affect lymphedema (except weight gain, but that doesn't sound like a problem you're having).

The surgery you mention--moving lymphnodes from one site to another, or connecting lymph vessels to blood vessels for more effective draining--is still very much in the experimental stage and is certainly not standard lymphedema treatment, so please don't worry about the need for further surgery.

Briefly, standard lymphedema treatment involves Manual Lymph Drainage, which is a kind of very gentle massage that helps to stimulate the lymph vessels (which are close to the skin) to move lymph more efficiently. Some special exercises help with that as well. And adding compression to the arm or other swollen area to help reduce swelling and maintain the arm in good condition. That compression at first is usually a special kind of layered bandage, applied by the lymphedema therapist. Later, when the swelling is reduced, you will be fitted for thin compression garments to use as needed (some of us need them all the time, others just for exercise or travel.

All of that will be worked out with the help of a well-trained lymphedema therapist. Here's how to find one near you--any member of you medical team can write you a referral:

http://www.stepup-speakout.org/Finding_a_Qualified...

I hope some of that helps to calm your concerns at least a little. With gentle treatment and time to learn the "ropes" of managing this new challenge, you'll soon be on top of this. Please ask away if you have other questions, and do keep us posted on your progress.

Gentle hugs,
Binney

Mary, I don't know anyone in Illinois, but hopefully some of our Illinois gals will be along soon with suggestions. The link above can help you find someone well-qualified. I'm glad it's "only" lymphedema and not the other things you were fearing! Lymphedema is as steep learning curve, but it really is doable. Hang in there! We're here for you,
Binney

Mary, the LE doc I’m seeing tomorrow, Dr. Kaplan at NorthShore Evanston Hospital, is supposedly the best in the Chi. area (acc. to Chicago Magazine’s Top Doctors article). Evanston isn’t exactly a stone’s throw from Plainfield, but it is doable. His office (Dept. of Physical and Rehab Medicine) is at 1000 Central St. Ste. 880. Phone is 847-570-2000. He also has offices at Glenbrook and Highland Park, which might be an easier trip along the Stevenson, Kennedy & Edens so you needn’t go through the city.