MinusTwo, Medicare does not cover any lymphedema garments, which can sometimes lead other insurance companies to not cover it either (this only applies to the US, of course). Here's WHAT WE ALL NEED TO DO! PLEASE!!!
There is a bill before Congress right now called the Lymphedema Treatment Act which would provide insurance coverage for patients with lymphedema. We have many Representatives behind the bill (and of course could use more!), but we especially need more Senators to add their names to the bill. If you are in the U.S., please call or email your members of Congress and let them know we need their support.
I know that sounds daunting, but here's the Lymphedema Treatment Act website, where you'll find everything you need to do this, and so easy to access that you can do it in minutes!
PLEASE HELP MAKE THIS A REALITY!
Go for it!Binney
Binney- I'll do this tonight! LE just doesn't go away. We need our insurance companies to cover our needs. I have BCBS and it has been great at covering all my compression garments and Flexi-pump to. I don't know how I would have paid for all those things -
Thanks for posting Binney. Yes, I'll call & email.
It obviously depends on your plan, but BCBS did pay for a sleeve and glove for me. As others have noted, the correct description or code is probably the key. I think I had a co-pay amount. My oncologist had referred me to a lymphedema specialist, who, in turn, referred me to a shop that caters to women with cancer.
I'm on Medicare and have Blue Cross as my supplement. Medicare does not cover gloves and sleeves so Blue Cross Blue Shield doesn't. Before retirement BCBS does. Think and wish it were different...would love to know others experience.
AliceS- that's so ridiculous! If they would work together everything would be covered! I have BCBS and they have been wonderful. Since April I have gotten 5 compression sleeves, 2 gloves, a night sleeve, then a full chest/arm night garment and 2 compression bras. (Belize I'm sure I spelled that wrong) plus I have the flexitouch pump. How can BCBS cover this for one and not the other???
I finally have an update-just took 6 weeks it looks like...groan.
I’m with Florida Blue (because Blue Cross must not be a cool name down here). Called Romain number to request the glove and sleeve coverage information. Got routed to a home health provider company. Took a bit to be understood of what I was calling about and where she needed to look for information. It came down to they also farm coverage out to another company. She took all my information to submit and eventually I got a call from a company in state although on the other side of the state. From what I can guess (without asking specifically) is that it’s a mom and pop type shop that is very enthusiastic about the work they do although she wasn’t very professional (a lot of communication was done by text and there was enough misinformation that really frustrated me). Bottom line though, she took care of all the insurance paperwork, knew coverage amounts for my plan (100%!), and got everything submitted and approved by the end of the year. Two sets of gloves and sleeves were sent to my home on the 29th and arrived this week. She said normally they would get custom gloves made but time limits were a factor. This is my first set so I’ll give it a try and let her know. I was on a PPO plan that she says automatically covers compression garments completely. I switched to an HMO this year (I should just be on follow up care now-praying that’s the case) but she says I should still be covered for replacements.
That’s my story so far. My advice is to give it a try with insurance. Get to your calm place and make the phone calls, refocus and calm, and make more phone calls, calm and follow up. I’m hoping that now that I’m in the system I’m done. Finding the correct person to talk to was annoying and then getting the communication between the supplier, MO and PT - during the holidays- was excruciating but it did work out! I’m letting my PT know as well since she told me insurance didn’t cover garments!
Happy new year
CC, had to laugh out loud at your advice about "refocus and calm." Yes, indeed! The frustration of trying to make your needs clear, hang on hold for indefinite periods of time, and then argue for the information you need tends to ravage the emotions. (Chocolate helps.)
Yes! I am finally being heard and it feels good! I have a wonderful therapist now who is looking at the whole picture!
My LE is quite controlled via compression sleeves and Flexitouch pump. Thank god for insurance.
Went back to work this week. I am trying to skip flexitouch pump here and there. Maybe having night sleeve could be a good substitute for non pump night.
I understand it is custom made. Q is approx price range and any portion covered by insurance?
Thank you very much for your help.
Yes, Vargadoll, totally agree it's ridiculous for gloves and sleeves to not be covered by Medicare/Blue Cross. However, have contacted both. Blue Cross only covers what Medicare pays on--Blue Cross will pay the remainder. If not covered by Medicare, Blue Cross doesn't pay at all. I am grateful, however, that all my surgery, Herceptin, Chemo, etc. etc. was totally covered. Just had a PET/CT scan and all clear--it's been over 3 years for me---am SOOO happy to report that!
Thanks for you comment.
Wow - 62 pages of responses! I can't read all of these ...
I just heard yesterday that - even though I only had 3 nodes removed and have no signs of LE - I should be wearing a sleeve and glove for exercise, flying, and high altitude. True?
This was from a LE specialist PT that I saw as part of an assessment prior to starting an exercise program. I had seen another shortly after surgery but didn't get that recommendation.
Anyway - she said that since it's preventative that I could get it OTC at a pharmacy/medical supply place nearby. What would you all recommend?
Good advice about using arm and hand protection for exercise, flying and travel. OTC is fine, but it needs to be an excellent fit or it can actually cause problems instead of preventing them. So rather than searching the racks at a pharmacy, do find a fitter at a medical/mastectomy supply outlet. Also nice to have the lymphedema PT check out the fit or you. Since your surgeries were bilateral, both arms are at risk, not just the side that had nodes removed, so you'll want to consider protection for both arms. Once you have them, get used to them gradually--an hour the first day, and work up to however many hours you'll need them on for flying or travel.
Here's information about buying and proper fitting of compression garments, so you'll have an idea if they're right for you:
Once you know what size, compression level, and brand you like, you can order online.
More ideas for reducing your lymphedema risk here:
Hoping you never have to join our "swell" sisterhood!Binney
Ok ticked off here and need to vent. I’m just taking a rest as I’ve spent 45 min looking for my glove in bedroom. I know I set it down there but can’t find. Ugh and it’s not because my bed room is disorganized. It’s clean! You would think I could find it....but NO! Dang I’m trying to pack for a trip and all! Ugh! Phooey! Thx for listening.
Hugz- did you find your glove? I lost both mine and one of my sleeves last week. I am very organized to and I was so mad at myself! I posted in my surgery group how upset I was and one of my surgery sisters said she would say prayer to Saint Anthony the saint of all things lost. That night I dreamed one of my gloves was in my robe pocket (hadn' worn it for days because it was warm here) when I got up and checked my gloves was there! I currently have all my gloves and sleeves together!
lol too funny.
I did find my glove half hour later. Ummmmm...It was on my hand but I was actually looking for another one which I thought I was wearing earlier. Somehow got confused which glove I was looking for as I was so busy packing all these gloves and sleeves for a trip. (Trust me I cant explain it any better. I'm still confused how I had the memory lapse. so stupid!) le will drive a person crazy. I usually have them date labelled to soI have no idea how I screwed up
Has anyone been able to manage their LE with just Kiniesology Tape on their arm/hand for long periods of time? Currently, I am doing this. I put one long piece on my forearm that reaches almost to my knuckles and I change the tape every 5 days or so. I am wondering if it's possible to do this for years or if I am just in a happy short stage.
Thanks for your thoughts on this!
My MLD girl took the taping class and said it works. I can’t see why not forever as you are opening up the Lymph channels by slightly stretching the skin.
She puts it across my back sometimes when I go on vaca so I don’t need to wear a compression tee. It lasts 4 days for me. I have to watch I don’t tape burn myself peeling the parts off once most falls off. Be careful.
I would love to learn to do my own hand and arm. So much more attractive than ugly beige sleeves.
I had the tape across my back and around my breast. It worked quite well. Unfortunately in the Houston heat & humidity, it's impossible to go more than 3 days w/o a shower so it pulls off.
Any idea how you would tape your arm if you only experience mild upper arm swelling? (I would definitely try that.) I've never tried kinesio tape for LE but I've used it for years on my knee subluxation. Here's a strange tip for avoiding the tape "burn" that it can cause: paint the area to be taped with Pepto Bismol & let it dry before applying the tape. The tape will still stick but there's no burn or skin irritation. Weird but it does work (at least for me!).
Glad you found your glove, Hugz. They are too expensive to misplace!
Great pepto idea cause I get tape burn from kinesio no matter how long I try to bathtub soak off or olive oil soak it off.
I think you should tape hand to move fluid out of there and out the top of arm even though you have no hand le. You don’t want handgetting stagnant with fluid. It’s the same principal as gloves, gauntlets worn with sleeves.
Let me see if I can find the kinesio thread and bump this interesting subject.
Here's a website with lots of information regarding KT tape for lymphedema. There are pictures of tape on arms - please know that my arm taping is not elaborate. While my PT showed me how she cut the strips at the end to go in different angles on my hand, I found that the ends began to peel off very soon. So now I simply use one of the KT strips without cutting it. It's a whole strip of KT tape that runs from my elbow to near my knuckles.
The part on my hand peels after a few days so I cut that off with scissors and then wear a glove while the rest of the KT tape is still on my forearm. This weekend, I will start over with a new KT tape strip.
I bought beige colored KT tape online from Amazon. I am looking forward to wearing it this summer with my sleeveless tops to work. It's much less noticeable than the sleeve (and the bright blue KT tape leftover from my daughter's knee taping for sports)
If the above website doesn't answer all of your questions, there are quite a few more resources online.
kale thx so much
I think I'm going to bite the bullet and purchase a donning device soon. I know some of you have generously shared which device works best for you, and I've bookmarked some sites based on your comments. Rather than scan 62 pages of posts, I'm lazily asking you to share your preference again, including a source if ordered online. This would provide a focused section of notes for others as well. Please note that I have extremely large upper arms if that would be a factor in your recommendations.
Also, did insurance help pay for your device? I'm in a new insurance year so I'll have to pay out-of-pocket. It's a question of whether it would count toward my deductible. Thank you in advance!
brighlifedirect.com is very reasonable for any le supplies. Mine is the green coloured slippey made from parachute material. I think Arion brand. It accomodates big arms. I think I paid 25 a couple years ago. It's great that I can take it anywhere travelling rolls up into a small ball. Lasts about five years. Saves on sleeves and makes donning a snap!
I use the Ezy-As donner : https://www.brightlifedirect.com/ezy-as-stocking-a...
You'll need the red for your arm. It's REALLY simple and has saved me a lot of tugging; it's the best purchase I've made in the LE world!
On the other hand, it's not as easy to travel with as the slippey hugz4u mentioned.
Hope that helps!
Thanks, ladies! I hope others will chime in.
Hi All -
Even though I only had one lymph node taken out with my lumpectomy, I have stage 0/1 lymphedema (lowest level). I only have to wear my sleeve when it is symptomatic. That is becoming more often. There is also swelling in my hand. That does not really seem to go away. I read today that certain medications such as Anaestrazole or Tamoxifen can some times contribute to edema. Does that mean that it causes lymphedema? I have taken Tamoxifen for a little over two years (I think), Evista and for almost three months Anaestrazole. I know that a lot of information on the internet can be trusted.
Bernice, welcome. If your having swelling in your hand then a hand garment is ever so necessary to wear with the sleeve You may benefit from daily wearing to keep your stage low and manageable. Not sure about the drugs your on but I hear naproxen type drugs will cause swelling. That said, I do take them minimally when's I injure myself.
Hopefully VoroucisReader (sp?) will see your post and comment. I think she’s a pharmacist. You could try to PM her.
You need to go back to a therapist to be looked at again. Keep this from progressing by caring for it ASAP.
Hi Hugz4u -
Thanks for the quick reply. I haven't been able to check back for a few days. Yeah, I wasn't really sure about those drugs making the problem worse either. You can't competely trust everything you read on the web either. I am trying to arrange another appointment to go back to the lymphedema department of my treating hospital to discuss it as well as possibly the best hand garments to be wearing now at this point. Hopefully I will be able to set something up soon. I haven't heard from the person you were referring to either so perhaps I will PM her. I will let you know what I find out.