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Topic: Question re: compression garments

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Sep 14, 2011 12:03PM

mthomp2020 wrote:

Has anyone been able to get their insurance to cover the cost of a compression garment?  I haven't heard back from my insurance company yet, so I thought I'd ask here if they're usually covered or not.

Marsha Dx 5/21/2007, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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Sep 14, 2011 12:30PM BeckySharp wrote:

Mine pays 85% of any ordered by my Dr.--100% if I have paid out all of my catostrophic for the year which will probably happen this year.  Becky

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Sep 14, 2011 03:20PM lisa_loves_alice wrote:

mine pays for four garments per year. 

I was actually coming to ask a question about garments too -- 

I basically wear my sleeve all the time and I wondered how many women do this?  and do garments wear out with such frequent use?  I try to wash it every night, but it still seems like they start to get less tight after a month or so of constant use. 

I'm just two weeks out from radiation so I think I still need to wear it all the time but maybe not.  It doesn't really bother me -- feels good actually and after all the cancer stuff I'm pretty immune to any looks I get.

dx 8/31/10 @32 yrs and 12 weeks pregnant. stage 2, ER+/PR+/Her2+. Lumpectomy and SNB (0/3 nodes). AC (4x3 wks), taxol with herceptin x12 weeks, herceptin for the rest of the year. Radiation x 33. Tamoxifen for 2 years, then we'll try for baby #2.
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Sep 14, 2011 03:30PM LindaKR wrote:

My pays for 6 compression garments a year, this can include sleeve, gauntlet, compression bras.  It's cover as major medical, so after the deductible is met it pays 80% until my $3000 out of pocket has been met.  I know that Medicare does not pay for compression garments.  I have Blue Cross of Idaho.  I do know, however, that not all insurance cover them.  A medical assistant at my oncs office had BC a couple of years ago, when she ordered hers she found that the medical insurance that the oncs office has does not pay for compression garments, how's that for ridiculous.  Her husbands insurance paid for hers.

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema. Dx 3/19/2010, IDC, 4cm, Stage IIIA, Grade 2, 5/18 nodes, ER+/PR+, HER2+ Surgery 4/2/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 5/15/2010 Herceptin (trastuzumab) Chemotherapy 5/15/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 9/15/2010 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Radiation Therapy 9/25/2010 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 14, 2011 03:34PM LindaKR wrote:

lisa_loves_alice - have you seen a CLT?  I have stage 0-1 LE and have seen two different CLT's they both said it would be best to wear a sleeve during the day, everyday, I don't always, but when I do I see that it makes a difference.  They both also told me that they really only last about 6 months before they're stretched out. So in theory if you got two sets every year and alternated wearing them, then they should last a year. 

I see you're pregnant, since you'll be packing your new little blessing around, it would probably be really good to wear it in the daytime.  In know when my grandkids are around and I pick them up alot my arm and hand swells if I don't wear my sleeve.

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema. Dx 3/19/2010, IDC, 4cm, Stage IIIA, Grade 2, 5/18 nodes, ER+/PR+, HER2+ Surgery 4/2/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 5/15/2010 Herceptin (trastuzumab) Chemotherapy 5/15/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 9/15/2010 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Radiation Therapy 9/25/2010 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 14, 2011 03:36PM anna4969 wrote:

I just started wearing a sleeve the end of May.  My insurance company gave me trouble paying for it.  However, what I found out is that lymphedema garments are covered under the Women's Cancer Right Act of 1998.  So, if your insurance company gives you trouble, reference this act.  They sent the first EOB explaining it wasn't covered due to my insurance not covering durable medical equipment. I then called them and referenced this act and they saw that it should be covered.  You might need to talk to a supervisor, however, as the general representative at the insurance company had no idea what I was referencing. All said and done, they covered it 100% as I have already met my out of pocket max. 

Dx 1/13/2010, IDC, 6cm+, Stage IIIA, Grade 2, 9/18 nodes, ER-/PR-, HER2+
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Sep 14, 2011 06:33PM mthomp2020 wrote:

Unfortunately, the lymphadema isn't in my arm.  I'm stage 4, and had radiation back in April to my right hip for bone mets.  I now have lymphadema in my right leg.  So it wasn't caused by my mastectomy.  I suspect that I'll be paying for the garments out of pocket.

Marsha Dx 5/21/2007, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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Sep 14, 2011 07:09PM - edited Sep 14, 2011 07:14PM by Binney4

Marsha, I'd sure check out the Women's Health and Cancer Rights Act, because your leg LE is also a complication of your breast cancer treatment.

If you're stuck with out-of-pocket anyway, you'll want to find out if off-the-shelf will work for you, as they're cheaper than custom. If so, shop the on-line LE supply sites (LymphedemaProducts, BandagesPlus, BrightLife and others). Get on their mailing lists too, because some have good seasonal sales where they reduce prices by a percentage or offer free shipping. If you need a night garment there are off-the-shelf options for those as well, and a couple of the companies (ReidSleeve, Solaris) do offer financial help in some cases.

When I first asked my insurance company about coverage for LE they said no -- the person I was talking to had never heard of it. You need somebody higher up. (After a lot of hanging in there with appeals and flooding them with LE information, it turns out they cover garments 100%, but that sure wasn't something they could tell me over the phone.) Better yet, have you requested a case manager? Many insurance companies have them to help out in complicated situations, and they can cut through a lot of bureaucratic garbage for you, but you have to ask for one.

(Actually, the way I finally got an answer from my insurance was to take my whole family with me to their offices, with a picnic basket and a few novels to read, and tell them we were prepared to wait while they figured it out. Didn't take them long at all to get me into the inner sanctum of some higher-up who was able to make the decision. In fact, we ended up eating our picnic at home!Wink)

Hoping you get this straightened around with as little further hassle as possible!

Hugs,
Binney

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Sep 14, 2011 09:41PM toomuch wrote:

Binney - You're a riot. I envisioned your picnic at the insurance company and had to laugh. Laughing

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Sep 14, 2011 09:59PM lisa_loves_alice wrote:

Marsha, I really hope you can get the garments covered. 

Linda - thanks for your reply. yep, I do see a CLT.  I saw her weekly through radiation for manual lymphatic drainage.  She's encouraged me to wear the sleeve as much as I'm comfortable with and has said it seems women who wear sleeves regularly early on do better in the long term.  

I actually have a six month old now -- I was dx'd during my pregnancy and she was born in March. I think this is one of the factors that contributed to my getting lymphedema with only 3 sentinal nodes removed.  I was a bit out of shape after childbirth recovery and chemo and I was picking up my big heavy baby all the time.  I try to always wear my sleeve around her, even pull it on in the middle of the night for wakeups if I can

dx 8/31/10 @32 yrs and 12 weeks pregnant. stage 2, ER+/PR+/Her2+. Lumpectomy and SNB (0/3 nodes). AC (4x3 wks), taxol with herceptin x12 weeks, herceptin for the rest of the year. Radiation x 33. Tamoxifen for 2 years, then we'll try for baby #2.
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Sep 15, 2011 01:32PM KS1 wrote:

Hi Marsha - my  insurance covers 3 or 4 sets of garments a year based on medical necessity.  They pay 90% for in-nework and 70% for out-of-network.  However, my experience has been when I go to an out-of-network fitter and then submit the paperwork myself (with a prescription), they dither and eventually pay nothing.  When my hospital-based therapist fits them and sends the order to an in-network vendor, insurance pays the 90%.  I think 2 things contribute to the difference:  1) my therapist writes a detailed letter of medical necessity that is cosigned by an MD, whereas I only submit an Rx, and 2) in-network vendors have the clout to bully insurance companies into paying, whereas I am just a lowly patient.  

Even though getting my garments through a therapist  means waiting weeks for an appointment, that's what I do.  KS1

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Sep 15, 2011 01:57PM sheri56 wrote:

Marsha....my insurance has been covering my LE garments also. I've had 2 sets (glove and sleeve) in the past year. For me, they did stretch out by the end of the 6 months and also start to look a bit "raggedy". When I got the new ones, they felt so tight but after a few days, it actually felt good being that tight.

I try to wear the garments most of the day. I do take them off when I prepare dinner and don't put them back on. By that time of day, for me, it is a relief to take them off.  

I've been meaning to also ask on forum, who monitors your LE? I saw a qualified LE therapist while I was going through chemo and radiation (for 6 months) but no longer see them. The last time I saw him, he asked "do you want to keep coming, or try to handle it yourself at home?" I said I wanted to try it myself. So, each morning I do the self-massage they taught me. If I keep up with wearing the garments and the massage - my arm doesn't swell up much. So I guess I've got the LE under control.

Will LE garments and massage be part of my daily routine forever? There are days I wonder if I should try not wear the garment and see what happens.

Your thoughts are greatly appreciated!

Sheri

Sheri Dx 9/23/2010, ILC, 5cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 10/4/2010 Lymph node removal: Left, Sentinel; Mastectomy: Left Surgery 10/12/2010 Lymph node removal: Left, Underarm/Axillary Chemotherapy 11/28/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/27/2011 Hormonal Therapy 5/13/2011
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Sep 15, 2011 03:02PM - edited Sep 15, 2011 03:03PM by kira

Sheri, I had posted an article from the National Lymphedema Network on why it's good to go back for 6 month check ups:Also, over time, I've found my need to do MLD/wear compression has waxed and waned. Overall, it's gotten better:

he Importance of a 50,000 Mile Check -up
by Linda McGrath Boyle, PT, DPT, OCS, CLT-LANA

It is not unusual to meet a person with lymphedema who has elastic compression garments that are more than 6 months old. In other words, there has been no evaluation or treatment of the limb or swollen area by a trained lymphedema therapist for as long as the person has had the old garments.

Below is an outline concerning lymphedema management.

Tips for Successful Lymphedema Management: Recommendation Regarding Supplies


Know your insurance.
Which durable medical equipment (DME) companies offer coverage for your lymphedema supplies?
What is your annual bandage and garment benefit?
Replace garments every 6 months if worn daily.
Know the lifespan of bandaging alternatives and replace as recommended by each manufacturer.
Discard short-stretch bandages after one year of consistent use.
Replace open-cell grey foam frequently after 3 months of nightly wear, because they break down easily.
Obtain new closed-cell foams such as orange Komprex after one year of continuous use.
Launder or replace finger and toe bandages frequently to keep them germ-free.
Clean or replace footwear regularly to avoid fungal infections.


The top 10 Reasons to See Your Lymphedema Therapists Every 6 Months
To prevent an infection that could result in a hospital stay.
To prevent the involved area from becoming larger.
To prevent the involved area from becoming firm.
To obtain new garments for consistent and effective compression.
To learn about new and improved lymphedema products that are being invented.
To review your self-care strategies which may change and reduce the time required for your daily routine.
Your insurance company may change your garment benefit.
If your lymphedema worsens, you may need to repeat phase I treatment, which includes daily bandaging, manual lymphatic drainage, skin care, and exercises. If your lymphedema is well-controlled, you may only need one visit for new garment measurements and review of self-care instruction.
Most people more effectively control their lymphedema if they attend regular checkups with their lymphedema therapist.
Last but not least, you'll receive support and encouragement from your lymphedema therapist. You deserve credit for a job well done!

Taking care of your lymphedema is a lot of work and it challenges your ability to perform daily activities. It can also be very expensive. Some people with lymphedema do not wish to return to their lymphedema therapists because it reminds them of a difficult time in their lives. However, controlling your swelling helps to prevent a cellulitic infection that could result in a hospital stay as well as a large and firmer limb. If you do develop an infection, it is important to make an appointment with your lymphedema therapist, as you may need active treatment. You may need to learn new bandaging routines and purchase compression garments with different specifications.

Regular checkups include re-evaluation of fluid volume, tissue firmness, skin condition, body weight, and exercise program. Controlling body weight and exercising regularly are important for persons with lymphedema.

I encourage you to be an educated consumer and find a lymphedema therapist that can be your partner in managing this life-long condition. You can visit lymphnet.org or clt-lana.org to find a list of therapists in your area. When moving or heading south for the winter (snowbird syndrome) please ask your current lymphedema therapist to recommend a new qualified lymphedema therapist.

It is helpful to regularly consult the National Lymphedema Network's website for new and updated information. The website contains reliable information according to current medical evidence or expert opinion.
 

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 15, 2011 05:29PM sheri56 wrote:

Thank you Kira! That was very helpful. I plan to set up a 6 month follow up appointment with my LE therapist. Can't hurt to touch base with him and at same time see about getting new garments.

Still curious about how often others wear their garments. And what they do on day to day basis to get their LE under control.

I so appreciate this forum!!!!

 Sheri 

Sheri Dx 9/23/2010, ILC, 5cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 10/4/2010 Lymph node removal: Left, Sentinel; Mastectomy: Left Surgery 10/12/2010 Lymph node removal: Left, Underarm/Axillary Chemotherapy 11/28/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/27/2011 Hormonal Therapy 5/13/2011
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Sep 15, 2011 07:17PM alex56 wrote:

Hi Sheri!  My LE is pretty mild so I have been able to control it with MLD and daytime compression sleeves.  I have not needed to wrap at night for several months!  I do see my therapist every 5 to 6 months for a "tune-up" and a pep-talk.  There are days when I forget to wear my sleeve and nothing terrible happens, but I do spend extra time on massage on those days.  My insurance covers the sleeves; I get 3 every 6 months.  You know what else works for me - I use the hand held shower head to do massage. It's fantastic!  I do the little circles with the water stream on my trunk, chest, and arm.  On hot days I use cool water and it's just heaven.  Hope you meet success with your routine!

Dx 12/2009, Stage IV, Grade 2, 20/25 nodes, mets, ER+/PR+, HER2-
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Sep 16, 2011 07:55AM snorfia wrote:

I also have pretty mild LE, so mild that I wondered if it had gone away.  So I went 3 days without my compression sleeve/gauntlet, and realized, painfully, it had NOT gone away.  I do daily exercises, simple MLD massage, and wear the compression sleeve/gauntlet combo during the day, as well as a slimmer for truncal LE.  It's a simple maintenance routine which is not overly time consuming or burdensome.  I think if I didn't do it, though, I'd end up eventually needing more intervention. 

Dx 5/20/2011, DCIS, <1cm, Stage 0, Grade 2, 0/5 nodes, ER+/PR+
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Sep 16, 2011 08:15AM kira wrote:

Snorfia, my LE therapist always tells me to attempt to see what I can get away with--and then I figure out what I have to do to keep it under control.

It's good to re-assess and test our limits, and it's kind of dispiriting to discover that they still exist, but with such great compliance, odds are that things will never progress and have a good chance of getting better.

Kira

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 16, 2011 09:27AM - edited Sep 16, 2011 09:35AM by mthomp2020

My insurance company approved 12 visits with the therapist.  She said that should be enough to get it under control.  I have my evaluation next Tuesday, so I'll know more then. My lovely insurance company requires me to pay $45 for each visit.  Good thing hubby is gainfully employed!

I did finally hear back from my insurance company.  They'll cover 4 garments per year, so 2 every 6 months.  And they sent me a list of providers in the area.  I'll check with the therapist to see if she's familiar with the providers and if they have good fitters on staff.  They're not the one she usually sends people to.  If she feels the other providers aren't good at fitting, I might just bite the bullet and pay out of pocket if I don't need custom.  Most leg compression garments seem to be some type of stocking, and they aren't as expensive as the sleeves are.

One problem I'm going to have is with wrapping.  Due to cancer in my spine and my hip on the affected side,  I can't reach my toes on that side.  I have trouble just putting on a sock.  My husband is only home 3 days a week over the weekend.  Plus, he's legally blind and won't be able to wrap properly.  He had trouble just helping me get a compression sock on when I flew.  So I'll probably end up with some other type of night garment.  The custom ones run about $1000.  I'll gladly bite the bullet and pay out of pocket if necessary to gain control of this. 

I also have to figure out what I'll be able to wear, as my leg will be wrapped from the foot to the hip.  I'll have to find something I can wear over the bandages.  I'm going to get a boot that you wear over a cast, since they're easy to get on and can handle the bulk of the bandages.  Right now, I'm even having trouble tying my laces on the right foot, so the boot will be OK for the couple of weeks that I'll need it.  Hopefully it'll only be for 2 weeks, then I'll be able to wear a compression garment.  Thank goodness we're past the really hot weather! 

I'll be able to do most of the massage, but the foot and ankle will be a problem.  Hubby could help on weekends, but the rest of the week I'm on my own.  Hopefully the therapist will have some suggestions. 

I really appreciate all the feedback and suggestions.  It's great to have you all as such a helpful resource.

Marsha Dx 5/21/2007, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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Sep 16, 2011 10:40AM kira wrote:

Marsha, I'm going to ask Binney to answer--mobility is a HUGE issue, and legs are large, and hard to reach.

Perhaps they can use one of the caresia products for you to bandage over.

12 visits and you're done--what part of chronic disease don't they get??? This is not a back injury!

I'll pm her.

Kira

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 16, 2011 01:08PM - edited Sep 16, 2011 01:12PM by Binney4

Marsha, since so few  of us here have to deal with leg wrapping, you might find more help on a site that deals with all kinds of LE. I'd suggest you check out the Yahoo site AdvocatesForLymphedema. They're currently discussing where to find shoes for this challenging time. It's free but you have to join it to read or post. It's one of Pat O'Connor's (LymphedemaPeople) websites, so the information there is reliable or else it's caugt and corrected.
http://health.groups.yahoo.com/group/AdvocatesforLymphedema/

Hopefully your therapist will have good suggestions for self-MLD since you can't reach your ankle and foot. A small, long-handled paint roller (the kind you use for paining trim) might be worth a try. (As for tying laces, there are some suggestion for that on the Radiation-Induced Brachial Plexopathy page on StepUp-SpeakOut.org.)

You're really an inspiration, with your can-do attitude.Smile Brava!Kiss Keep us posted, please. Gentle hugs,
Binney

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