GRRRRRRRRR I HATE LE..........
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GmaFoley, I'm not sure if I have either. I see the PT tomorrow. I guess I should ask. Duh.
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Kate: Just got my first paperwork regarding LE appointments. I have truncal & breast LE, with "minor" involvement on one upper arm. I'm on Medicare and supposedly they only pay to teach you how to do self MLD. I'm at a major hospital & they do no therapy there since they are LANA CLTs but not PTs. For your comparison - office visits are all over the map: $139, $176.25, $947.12, $206. Beats me why they are different since they were supposedly all teaching sessions. Listed at "short" and "long". Boy isn't that a good technical discription. I'll be researching & will learn more as time goes on.
Just a note - I love my Belisse compression bra - even thought it cost $289.
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Kate: Just got my first paperwork regarding LE appointments. I have truncal & breast LE, with "minor" involvement on one upper arm. I'm on Medicare and supposedly they only pay to teach you how to do self MLD. I'm at a major hospital & they do no therapy there since they are LANA CLTs but not PTs. For your comparison - office visits are all over the map: $139, $176.25, $947.12, $206. Beats me why they are different since they were supposedly all teaching sessions. Listed at "short" and "long". Boy isn't that a good technical discription. I'll be researching & will learn more as time goes on.
Just a note - I love my Belisse compression bra - even thought it cost $289.
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Hey Granny............move up a little........my big ass is hanging off the back end of the broom..............lol
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kira: thanks for the linkys: i'll be watching the you tube ne in the morning, till i get back to doing it alone comfortbly..
the place where the "dog ears" were is my biggest swell problem. the le therapist says they're just "perfect pockets" for lymph fluid.. thats the spot that hurts the most. im using the paint roller ( thank you binney) and its' helping..
im getting new cami's and new peosthesis from ins soon.. just gotta wait for the appt..
im also gonna get another eval. i think im developing or had breat le.. i think its all related.
i only have to pay my now $40.00 co paymt. i did get a case manager in the beginning, and my hosp let me make very low pymts on the copays, as i filled out a " hardship" paper, BEFORE i started.. i wouldn't have gotten that, w/out the help from the nurse manager..
in fla, i have cigna, and the le therapist, if in system, HAS to accept whatever the ins pays, as paid in full.. i have to make copay, and 20% towards my deduct; then, its all covered. so thats why i do everything in the summer, since all the other drs. have had me meet deductibles..
i also find to get reval in the summer, while its' so hot, helps.. worst case scenerio; and it looks worse to the ins, so they pay more thru the year, cause i of course, swell more with the heat.
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Ok so wish me well on my pushing my luck weekend. I am headed to a professional conference, not the one I dreamed of in NOLA but one in Boston. I will compress at night, but not while in public. I acutually had a cover with absurdly long arms that might have worked but I lost it at the music festival.
I wish I had a room in the hotel....I could sneak away and throw on my garments for a bit.
Oh well, it is cool, no air travel, I have been drinking tons of water and compressing around the clock, even wearing the awful belisse in the day!
I wish this were just two nights, but I am going for 3!
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Carol, to followup on costs of custom night garments, my therapist just found out my portion of my next order. Provider said my cost for the Solaris Tribute UE-AG (night sleeve) with insurance is $132.75. The cost of the Outer Jacket is $22.50. Will see if therapist knows what will be billed to insurance co.
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Ok, Ladies - am I supposed to be achy and sore after my first LE therapy appt? Might be the new compression on the swollen area?? I sure give you ladies with Arm LE kudos for dealing with this... I understand now!!!!! Breast LE is the pits!!!!!!!!!
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Thanks to all of you who have put some cost figures in this thread. It's amazing how therapy visit costs can vary so much!
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Yes Carol, I am in the Mercy Hospital System - with insurance that maxes out at $1000.00 - They gave me financial paperwork to fill out within 2 weeks (the sooner the better they said) - My eval was $450 and my visits 2x a week for 1 hour will be $360 each.. This financial assistance, if we qualify, could take care of all of it or take a percentage and lesson our payments. I think if it gets me out of pain, it will be well worth it. For the month = $3240! Have no idea how I will pay for the month :-P
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Kira- Forgot to say- thank you for the links for the self MLD videos! I have them added to my bookmarks bar when I need a refresher.
GmaFoley- I have truncal LE and was wondering the same thing about compression and flying. I got my sleeves and gauntlets but my truncal is very mild so there was no mention of any other garments. As far as being achy and sore after 1st appointment, not sure if it's normal but I had the same thing happen after mine. I also had a headache and some facial swelling which she said was normal as she gets the fluid moving. It got much better after a few sessions. Hope it does for you, too.
dunesleeper- To get my sleeves the LE PT had to recommend them and I had to take that recommendation back to my GP (or your BS, PS- whatever) and they had to write the prescription for them. Then I had to figure out who was covered for durable medical goods through my insurance and go to them with the prescription. They measured me and ordered the sleeves. My LE PT told me not to get measured for my sleeves until I was done with my PT, though, as she wanted to get my swelling down as much as possible first.
MinusTwo- Thanks for posting your treatment costs. Amazing how everyone's are all over the map. Doesn't seem right that they can charge different amounts for the same amount of time. I'm waiting to hear back from the hospital on why it's that way. I pity the person who calls me back because already LE is making me cranky!
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duckyb, you perfectly capture how I feel about LE and RIBP neuropathy on my "black" moments. Last few days have been mixed. Had garments made back in April, but if I wear them for more than 4 hours, I swell a fair amount and it takes a couple of days of wrapping to get back down. I think part of the problem is that my fingers are smaller than when I was measured
, and so the fingers bunch and I swell. Therapist re-measured me and ordered a new garment 2 weeks ago. Called the DME company yesterday and discovered they hadn't even put the order in 
/ And I learned tha the cost of the garment is going to be almost $900! 
Sure it's a pretty specialiized custom garment with lots of add-ons (joined sleeve + glove in Juzo helastic silver, with silicon border and elbow dart), but come on, it's a DAY garment!! KS1 0 -
KS1........Ditto...........as wrong as it is.........I lost heart, and gave up...........I'll pay the price for being an "idiot", but LE got me down, more then the BC...........hope it works out for you..............hugs
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what is it about that does that Ducky...I feel the same way. Maybe it is because we know the LE is a life long battle and the adjustment we have to make are overwhelming. On Tuesday at work I was tagging some clothing with a tagging gun and gave myself "a shot" with the gun right through the vinyl gloves I now use while woking to keep the germs out and hopefully avoid another bout of cellulitis. I tossed the gun down and asked if someone else could please finish as I guess I can't do this part of my job anymore either. At least I am the boss and have that option. Who knew my job would become hazardous to my health. My husband wants me to just not work behind the counter at my store anymore but it has been my life for over 12 years and I love what I do. --heavy sigh-- what to do what to do????? Today I am chillin at home after getting the port taken out yesterday finally. Not going to lie my chest hurts up into my neck where that sucker lived for the last nine months. Not wearing any compression today and I feel a little free...sort of like telling BC an LE to @#$% off.
Maggie
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Help - Ladies here is another question: Compression bras for larger busted women? The LE Therapist is trying to save me money and gave me a Jovi Pak pad to use on my scar where the fluid i pooling. He said try it with my shelf bra tank tops that are cotton and lycra - he said the more lycra the better.. Also said try my sports bras... So far I have used my shelf bra and i have "ripples" on my breast - guess that's enough compression? And I guess I'm supposed to do this 24/7? When he was doing the MLD - he said it doesn't have to be so much pressure it hurts, BUT it sure hurts afterward.. didn't sleep a wink last night :P any suggestions on how to get comfortable? I have too many questions - sorry.. just feel so lost today...0
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I wore the camisoles that are made to hold in your fat during radiation to keep my swelling contained. They sell them at Target for about $20 maybe. I like them because the are long enough to tuck into my pants and do not ride up. Flexees makes em too. Found some at a local store here in Florida for only $6.
Maggie
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Ducky, I so understand your frustration, and giving up is 100% understandable too!
I only hope it's no more than a stopping-off place for you, while you catch your breath and do some of the work of grieving this chronic condition. When you're ready to pick back up we're all here to help, so please do stick with us through this really down time and let us help you grieve.Gentle hugs, shared tears (and some shared laughter too!), and of course chocolate,
Binney0 -
Mags, hooray for keeping at the job you love (and for making the rotten adjustments you need to make in order to do it)--YES!
Some days are teeth-grinding frustrating, but there are also those that let us forget about the limitations for a while. It gets easier, honest!
Foley, did he say 24/7? If so give it a try. It's lovely when you find what works and begin to see improvement. Onward! There are a lot of compression ideas at the bottom of the Truncal Lymphedema page at StepUp-SpeakOut. Most of us try several options before we hit on one or two that work. Keep us posted!
Be well,
Binney0 -
Chocolate helps everything !!!! Good idea Binney.
Ducky even if you give up now -
please stay with us... I need you here...You have been here for me since I started - You started just before me.. And I always loved your posts... Last week I was ready to leave the forums and you and others encouraged me to at least stay... I'm glad, with this new eval outcome, I listened to everyone!!! Love you and hugs... Maybe chocolate chip cookies will help - I will put them on Grannydukes broom and send them your way 0 -
Minustwo: Medicare does cover LE treatments. Here is a quote from the Medicare sight showing that the yearly benefit is $1880. If your doctor feels you need more therapy after spending the $1880 he/she writes to Medicare for approval.
Medicare helps pay for medically necessary outpatient physical and occupational therapy and speech-language pathology services when: - Your doctor or therapist sets up the plan of treatment, and
- Your doctor periodically reviews the plan to see how long you will get therapy.
The amount you need to pay Medicare is required to limit how much it pays for outpatient therapy services per year. This is called an annual financial limitation, or cap. Your Medicare benefit for outpatient physical therapy and speech-language pathology services (combined) is limited to $1880 per year. There is a separate yearly benefit limit of $1880 for outpatient occupational therapy.
Medicare Part B pays for Occupational, Physical, and Speech therapy as long as it is medically necessary, but only up to the yearly benefit limit of $1880. Before the limits, you pay 20% of the Medicare-approved amount after you have met your yearly deductible. After you have reached the $1880 cap, you will be responsible for 100% of the charge, unless you have other insurance coverage.
There is no cap if you go to a hospital outpatient therapy department. People who occupy a Medicare-certified bed in a skilled nursing facility are limited to the cap amounts and cannot receive additional covered outpatient hospital therapy while in the certified bed.
For more information, you may call 1-800-MEDICARE (1-800-633-4227).0 - Your doctor or therapist sets up the plan of treatment, and
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Minustwo: BTW, Medicare also covers two mastectomy bras every 6 mos. Medicare requires an original prescription to be written every 6 mos. but I don't know if there is a maximum dollar amount on this.
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Hey Ducky--don't give up! I know you. You're a fighter. Just take some time to take a deep breath and reattack!! We have missed you. Becky
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I love you ladies......................you all are what keeps me going......................I could never have made it through this horrible experience without all of you..................I will get angry............I will grieve............but i will never "leave"................I couldn't make it through a day without my best friends..........love, and hugs........
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Oh my how busy this thread is...I never understood the LE thing cause i had the edema....now im not sure what the hell i have.Goin to the internist tomorrow so she can tell me where to go and what to do.I did PT for the edema but i didnt like the therapist.And i never paid a dime.Medicare and United Health care paid for the 6 tx.i had.
I did buy a compression bra that was not that expensive.The ammonia..I went to a special place that measured me and tried to talk me into the expensive ones.my insurance covered 0.the bra i think was around 75bucks.I wore it 24/7 for quite some time.I slept with it last nite and it was not comfortable.Now im wearing a $39.00 sports bra.I really think i finally got the dreaded LE.grrrrrrrrrrrr.
end of rant.
Hello everyone.Have I told you lately how much i hate bc???????????????????
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grannydukes: Sorry you have LE but at least your insurance covers the treatments. For the mastectomy bras, if the place you get them at doesn't submit to Medicare (most places don't) then you have to do that yourself. If you find a place that submits you'll never see the bill. I wish I could wear a sports bra but with so many nodes removed a sports bra comes up too high on me and rests in that glorious spot so the therapist said I can't wear one. LE is a pain in the butt and I sometimes get angry about having it and other times just accept it. I have a flap of skin that if I could only get the edema pushed to the front but it seems when it gets this bad the only way is for me to see my PT and they hand massage and use one of those arm suction machines.
I was warned on my first PT appointment that after PT I might have to go to the bathroom because the lymph fluid is pushed through our body. Oh boy, that first appt. I almost ran to the ladies room but it's never been quite that bad since but I always use the ladies room in case it comes on suddenly. My PT used to have out a box of chocolates but hasn't lately. It was nice to have a reward before or after or both if I could get away with it.
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my tx were paid for 100% BUT i did not have a mx.therefor i had to pay for the bras.Not even a discount.the real thing.I can wear the sports bra cause the one i selected just missed where the edema way.but that was after wearing that compression bra 24/7 for a lon long time and it was summer time and i was not a happy camper.along with buying the bras i had to buy a new wardrobe of long sleeve tops.
I never heard of goin to the bathroom after tx.come to think of it i did go.never made the connection.
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Hi everyone...posting on this thread for first time! I am two years out of surgery and a little over a year from treatment. The last month, my arm -- on same IDE as node removal is sore and heavy feeling. I thought it was too much computer stuff at work but it is feeling worse. Almost like when I have to use that arm...it is sore through elbow to wrist. After my surgery I was checked for lymphedema but was ok...I know it can come much later though. Just curious if this sounds similar..will head to GP to get it checked as I don't see Onco until August for checkups. Do mammo/US pick up lymphedema? This is all new to me. I am 2X cancer so always worry when some ache/pain starts. Thanks for any words of wisdom!
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Rachel, welcome! Though I'm sure sorry for this new issue coming up.
You're right that it sounds like lymphedema, unfortunately. And if it is, getting prompt treatment from a well-qualified lymphedema therapist will make it easier to treat and to control long-term.Lymphedema is a tough diagnosis to deal with. Coming as it does on top of all the cancer treatment, it can be downright distressing. Learning to care for it takes time and practice, but it really does get easier--honest!
Please let us know how it goes, and tell us how we can help!
Binney0 -
Thanks Binney. I will have to check out LE specialist in my area. I have logged this thread as a fave so I can learn a little more and ask more questions as they come up. Thanks again
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Wait . . Who's got the broom? Ducky, I hear your frustration over measuring, improperly fitting garments. I have had ill-fitting garments that mastectomy shops said were right. I had three sleeves and gloves that were supposed to be the same size, yet they were all different. Hold on. Please don't give up. I would gladly hook you up with my therapist, who I love. She is the only therapist who understands my body and can actually see changes without a measuring tape. If it weren't for her, I'd feel like I had two heads. Whoever she sends the measurements for garments has so far done a great job in following her instructions. My last custom glove was identical except in beige. There is a little nib or knot in the thread between the fingers, which caused a red mark on my hand between the fingers. Thought I was being fussy, buy I finally took back to her after my trip and showed her. She immediately said it needed to be redone. Except for this teeny imperfection, it felt great. She said NO, it has to go back. I think you like your therapist, but having someone else doing measuring might be helpful? You know what's right for you. Take some down time, do what you need to recoup from this lousy business, but if you ever want to try someone new, let me know.
Foley - My initial flare was truncal, and therapist had me find a shapewear tank - can go to Kohl's, Target, Kmart or other department stores. Look for one with edges that don't cut in. They do not need to be super tight! I had round channeled pieces (I believe they are Jovipaks) that I inserted on the sides of my chest below the underarm area when I needed extra compression. Yes, they will leave vertical lines from the channels that help promote the flow of fluid down your trunk. I wore tank/inserts 24/7 for four months, and it finally paid off. It was a royal pain during summer, but it can be done. It takes some patience and trying on of shapewear to find a good match. The StepUp site has a lot of great reviews for tanks. By the way, since the tanks don't have a band around chest, some find that it promotes better lymphatic flow. The tank does a fine job of holding those little pillows in place.0
