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Can't afford Le sleeves

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Since Medicare doesn't pay for LE sleeves, I can't afford the two that my LE therapist ordered. Other than asking for patient assistance from my medical clinic, is there any other organization that will help pay for it? If I can't get help, I can't buy the sleeves.

If anyone is interested, there is a webpage lobbying your senators and reprsenatatives for "Ask your Representative and Senators to cosponsor the Lymphedema Treatment Act! " As your constituent, I am writing to ask that you please sign on as a cosponsor of The Lymphedema Diagnosis and Treatment Cost Saving Act, HR 2499. This bill has bipartisan support and is endorsed by the American Cancer Society, Oncology Nursing Society, Komen Advocacy Alliance, LiveSTRONG, APTA, AOTA, the National Lymphedema Network and many other organizations."

Here is the link: http://www.capwiz.com/lymphedematreatmentact/issues/alert/?alertid=61518776&PROCESS=Take+Action.

This is all with LE (not just breast cancer survivors) services will be covered. I am amazed that LE sleeves and garments are NOT required to be covered by Medicare and insurance. Breast reconstruction, bras, prosthetics are covered but not medically necessary (don't think I am saying they shouldn't be covered or that I am saying that they shouldn't be, I agree that they should be.)
Thanks

New Flower
Posts: 3993
Joined: Aug 2009

Do you need custom or standard? I have class 1 extra which I can give you if you wear the same size.
New Flower

CHERYL 4
Posts: 55
Joined: Aug 2008

IF CINN CANT I COULD USE IT NEW FLOWER CHERYL MCCLANAHAN HC 70 box 1090 DINGESS ,WEST VIRGINIA 25671 ill pay postage thanks a pink sister since 2004 n countin

MAJW
Posts: 2515
Joined: May 2009

Instead of special ordering the sleeves, go to a medical supply store....I bought one there last fall...they measured my arm for the right fit...I paid $65.00 for it...I would bet that the special ordered ones are much more....I only have to wear it when I fly.....also call your local American Cancer Society..they maybe able to help with the cost... and yes, I agree, sleeves should be covered by Medicare...

Keep us posted...
Hugs, Nancy

New Flower
Posts: 3993
Joined: Aug 2009

Size and compression (class) are very important. improper size or compression can do more more harm than benefits. That is why it is important initially work with PT or LE therapist or compression garments professional fitter. When you identify your size and compression -pressure or class you can buy your self. Different manufactures have slightly different size chart. I am Standard sleeve on line now, as I know my size and class, and manufacture. I have tried all of them and have chosen Mediven, which works for me. If you do not have medical supplies store or they do not have your size, there are several companies to order on line . I used to do it at 1-877-525-7224 or visit us at www.AmesWalker.com, however they stop keeping Mediven brand. The cost of standard sleeve between $50 and $75. Most on-linr company allow exchange or return

Custom sleeve cost between $140 to $200.They are more durable lat longer and recommended for patients whose measurements are unusual combinations.
While my different insurance plans claimed coverage, I was never reimbursed for any of my sleeves for various reason. I agree that we should help and act on Lymphedema act

New Flower
Posts: 3993
Joined: Aug 2009

I got your address. please PM me your size and class( compression) Please take your address of the internet. I am concern about your personal info.

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

I agree with Nancy, start with the Cancer Society. They are a wealth of information. They just set up a wig exchange in Campbell they may have something similar for sleeves. If you get one from somebody, be sure it is the right size. I remember some time ago there was a post about an on line store for sleeves. It may be cheaper? I don't actually remember. I was on chemo at the time and my brain was fuzzy.

Keep us posted,
Cindy

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

I'm always amazed at what timely information I find here. My oncologist has sent me to an LE therapist for education and training. I have no symptoms now, thankfully, but had 3 lymph nodes removed and am getting radiation. So my question is answered that I just sent to my Medicare Advantage plan=Will they cover a sleeve. I'm going to, hopefully, be flying in September. Thanks for all the tips on where to buy.
Angie

Lynne Logan's picture
Lynne Logan
Posts: 105
Joined: Jul 2011

I was so dead set against removing more than the sentinel lymph nodes because of lymphedema worries. Then had radiation to that area and had to get a sleeve. I later had a new cancer on my right side with 19 lymph nodes removed.
I got pretty cocky and was using my original arm for blood sticks...which was okay until my 3rd one. It's nothing to play around with.
I was doing a lot of research when I first noted a slight difference in my arm and found http://crickettsanswer.startlogic.com/
Totally lovely people and I got 2 sleeves with gauntlets for free.
Yes, Angie, amazing how much information we can find on this site.
Lynne

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I have no idea on size. I imagine I am a bigger size since I gained so much weight since cancer and arthritis in the ankle. Thanks for all the support ladies.
I see my LE therapist tomorrow.
I feel a little lost in lypmhedema. I know so much about my post mastectomy pain syndrome, it feels weird to know so little about LE.Thanks for the information about where to buy cheaper sleeves. I will talk to my LE therapist tomrrow afternoon when I see her again.

I found out that Medicare may not pay for my Lidocaine IV infusions anymore as well. Those help my PMPS so much, I don't know what I will do without it. The new Advanced Pain Management took over part of the pain clinic and I don't know if they have patient assistance. They made me sign a paper last time stating that Medicare may not pay for the tx. I found it extremely rude that they didn't give me the paper before the appt. not right before I am getting the IV. The other company was so nice. They would just write off whatever medicare didn't pay. Hard to find places like that now a days.

Because my son moved out (he was being a potsmoking, irresponsible jerk and I was kicking him out anyway) I lost my family medicaid which paid for everything after medicare. I am really missing that...

jessiesmom1's picture
jessiesmom1
Posts: 712
Joined: Jun 2010

Yes, it is hard to believe that Medicare does not cover lymphedema supplies.

I would suggest that you contact the National Lymphedema Network/Marilyn Westbrook Garment Fund. www.lymphnet.org/patients/westbrookFund.htm

This fund was set up for situations just like yours. I hope that you qualify and they are able to help you or direct you to another organization that can help. Good luck.

IRENE

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Thank you so much for the information, Irene. But the LE therapist and/or clinic must be part of the The National Lymphedema Network and unfortunately, my therapist and clinic are not so I don't qualify for the assistance program.In fact, there are no certified therapist within 80 miles from me.There is absolutely no way that I can drive myself due to other health conditions, I have no one else to drive me. My SO only has two Sundays off a month at this time. But I appreciate the information. Perhaps the information can help someone else!

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I got my sleeves from the medical clinic. I didn't have to pay upfront, so I will put it on my $1489.89 Medicaid 6 month deductible. Since Medicare doesn't pay for them, I am not sure if the state will count that or not. Either way, I will be on the payment plan.

She gave me ones from a company called Juzo. I see on the box it says size VI. It doesn't mention class.It says Soft, Sleeve, Max, Regular. At another part it says 20-30 mmHg.

I am really disappointed in this therapist. She claims to have all this training, but yet mentioned NOTHING about what I could be doing at home. I had to find out online to drink more water and that there are things I could do at home and bring it up to her.

I know I don't have it bad as other, but my post mastectomy pain sure is. I had to research so much and learn so much on my own. I don't think I should have to ask and pressure my LE therapist to give me information. She should be handing it out readily with prompting on what to do. It seems like I am just a job to her, and really doesn't give a rats ass. I just show up, she does the massaging, I leave. She wasn't even mentioning LE sleeves until I did!!!

I really have no other choice around here for therapists.

She is also supposed to be heading up the Stepping Stones Post Cancer program to help get us in shape. I get nothing about that even though I have the referral from my doctor. My physical therapist for my back has been full of information for info. on easy exercises to begin with.

OH, and I have a ridge of these little white mushy dots on the upper rim of my LE sleeves. Within minutes, I get dot imprints on my upper arms from it. And the upper arm gets a band indentations on it as well. Is this normal?

Thanks for the help.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

The little dots are there to help keep the sleeve from slipping or rolling. Impressions in your skin sound normal to me...just like you might have an impression from a tight bra, or tight pants at the waist. What you don't want is a tourniquet effect. The idea is to get the fluid moving out of your arm, not to trap it there.

Even though your LE specialist doesn't sound great, keep pushing. Especially since it is your only choice. I suggest wearing the sleeve to your next appointment to show her the fit, she what she thinks about the dots and the impressions.

Other things you can do at home...avoid salt, watermelon is a natural diuretic, elevate your arm at shoulder height while watching tv, avoid carrying your purse on that side, avoid carrying things with a straight arm, protect yourself from insect bites and cuts to that arm and hand, avoid extreme heat and cold (no hottubs). While wearing the sleeve, several times a day raise your arm above your head, open and close your fist 10 times. Then with an open palm also rotate your wrist so your palm goes front to back. You can do these at shoulder height too.

I hope this helps.

Hugs,

Linda

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Thanks for the tips Linda. I will have to write them down on my daily list of things to do or I will surely forget!
I do take the sleeves off when they start to hurt. But I have noticed that the last few days I can wear them longer.

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Hoping the sleeve will help you!

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I am glad you got the sleeve and that you can make payments. So sorry about your therapist. I wish you had a choice to find another one. Good luck and keep us updated.

Hugs, Leeza

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Once you are more familiar with the sleeves and size etc. you can purchase them online at discountsurgical.com. I have been buying mine there for years.

Hugs,

RE

Sunrae's picture
Sunrae
Posts: 808
Joined: Oct 2009

I've been wearing a sleeve for about 2 years. The brand is Mediven from a medical supply place locally. My lymph. specialist works on my arm to reduce the swelling and measures it from time to time. She recommends a standard sleeve off the shelf and I haven't had any problems with it. Be sure and be fitted for the sleeve where you purchase it. It's supposed to last 6 months and be laundered every night but I launder mine about every 3 nights. After a few months these sleeves get stretched out and need to be replaced. As already posted the little white dots are to keep the sleeve from rolling down. Wishing you the best in your struggle with another side effect of bc.

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