GRRRRRRRRR I HATE LE..........
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None of my therapy is covered by ins. Other than a portion of my sleeves by ADP. I only have Provincial Ins. And I'm grateful for that much. But still......
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Ok, I got the royal shift! Found out there is one LANA therapist in town. Called surgeon's office to let them know.. and supposedly there was an issue with a different therapist in town so they won't referr me to her but not sure if this other therapist is ok.. Surgeon's office is going to call me back tomorrow. Let me back up a bit. There are 3 CLTs involved here... The first one had no room until August and said I need to get in to someone asap... He referred me to the second one... I called her and she is on maternity leave until August@#$%%^... So she looks through her list and finds one right in town and suggests I call them... This one can get me in next week... Bad sign??? Need opinions here... Just a small town or issues? The surgeons office said they would call me in time to cancel if necessary.. Everyone is going all out to get me in asap but why do I not have a good feeling about this??? Help - What should I do?
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I guess I would give this one a chance. If it doesn't feel right to you, then try one of the others in August. I know I was anxious to learn what I can do to reduce the effects of LE. I don't have it bad at this point, but it was something I really didn't want to deal with. Go for it Gma!!!
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Hi Ladies.............did something really dumb today, and did not realize it till about 1/2 hour ago when I was talking to my daughter about Peripherial Artery testing I had done today ...........I was describing what they did (since I hadn't had it done since 2008), and as I was telling her realized............................while they had the BP cuffs on both my lower legs......................another cuff was on my arm...........my lymphedema arm..........what the hell was I paying attention to....................it never dawned on me................needle draws yes,...............how the hell I screwed up on the arm is beyond me....................and that sucker was tight..............my arm seems ok, no pain or anything, but I hope nothing happens as a result of my stupidity.
What the hell was I "not thinking'.......................anyone ever make this mistake, if so what was your result...........damn it.......can't believe I did it..............my daughter said "Mom how could you not remember about your arm"..............medic alert bracelet.....for sure now.......
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Ducky, if you're not hurting and not swelling, I'd say you most likely dodged that bullet.
But the bottom line is, you know to keep an eye on it and you know what to do if it starts to get out of control. So--you're covered!I got a medic alert bracelet FOR ME, because I kept forgetting. That seems like an impossible thing to forget, yes? Well, it's not. Doctor appointments and "procedures" of all kinds are stressful (probably even moreso post-bc than before), so no beating yourself up for blowing that off, okay? LE is enough to worry about without knocking our heads on the wall over mess-ups. You'll be fine!
The ReidSleeve people (Lymphedema.com) offer free neon-pink alert bands, which I attach to my insurance card with a rubberband, so whenever I take out the card to check in at the doctor's, there's the band and it reminds me to slap it on my wrist. Chemo brain. PTSD. Whatever--together we find ways to outsmart it all!
Keep us posted!
Binney0 -
Foley, the NLN has a Position Paper on Therapy. Look for it here:
http://www.lymphnet.orgYou might read it, copy it off, and take it with you. As the therapist does the evaluation and talks to you about thrapy goals you can share it with her/him and plan your treatment with those guidelines in mind.
S/he does not have to be LANA certified to be well trained. Many perfectly competent therapists (including my own) are not LANA. You can call before you go and ask about her training. She should have at least 135 hours of specifically LE training beyond her OT or PT certification, and the more experience the better. This being a chronic condition our relationship with our LE therapist is long-term, so open discussion about all these concerns is a great place to start.
As for her having time right away, that's not necessarily a bad sign either. Referrals often come in waves, overwhelming a therapist's schedule. But other times they manage to whittle the waiting list down and they can get you in immediately. Lots of variables there.
Nothing about this is easy. Keep us posted!
Binney0 -
Katie I so understand your frustration over the cost. In January I spent 10 days in therapy for my legs and 4 days for my arm. Total cost was $6,525.00 and I owed $817.00 of that after insurance payment and adjustments. My sleeves and knee highs and a shelf gauntlet cost $695.00 and I had to pay $84.60 after insurance. Thankfully the company took there sweet time filing that one and I had met my deductible by then. I am also very thankful that they took even longer on my Jovi shoulder-vest thing because I have met my max now and only owe $8.08 for that $1900.00 thing. I still haven't gotten it but insurance has paid.
Now would somebody like to shoot my DH for changing jobs after meeting my out of pocket max. I so need to go back for my leg. My arm is not bad considering the hot weather but my leg has not gotten better but worse since my hand surgery. I asked about getting back in but there is a two week wait just to get evaluated and then another two weeks for treatment which put me during our vacation. So she said to enjoy vacation and then get myself back in the clinic. grrrrr I want to pass those brownies tonight.
Oh and if anybody finds not one but all three of my gauntlets that are missing let me know. lol I just can't seem to keep up with those things.
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What is the typical cost for a custom night arm garment, such as a Tribute? And for a night vest? I'm putting together a booklet about LE (for nurses who want to learn about it) and want to explain the cost of treatment and the challenges that come with that. I'm just in stock sleeve/gauntlet, so have not had to deal with cost of custom or night garments. Can those of you with non-stock garments give cost estimates? (as much detail as you can...how much did insurance pay; how much did you have to pay?)
Thanks!!
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I got my tribute sleeve and over sleeve October 2010. The place charged $750. Insurance paid $450 and wrote off the rest. I had met my out of pocket max so I didn't owe anything for it. Had I note met it, it would have been 20% of the $450.
The new night sleeve-vest that I haven't recieved yet cost $1900. Insurance allowed $1300 for it and wrote the rest off. I owed $8.08 because that was all that was left on my out of pocket max. Had I not met it, I would have had to pay 20% of $1300.
Hope that helps.
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KittyDog, thanks!! That DOES help!
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sorry Carol...cannot really help you as my nightime stuff is a cut to fit Farrow and only my daytime glove is custom from Juzo. It was 239.00 plus tax but had to send back as it did not fit right. They are making me another one with a piece in between or the thumb and pointer finger as everything seems to rub there. That is another $50 for that piece...ridiculous. Have not sent them into insurance yet...not sure if any garments are covered. They would not cover the wig so just going to send it in and see what happens. My sleeves are just off the shelf Juzo soft...like em
Just made the realization that i cannot wear my beautiful wedding rings anymore. I have to wear my stupid glove now and it is my left side....sadness abounds
...I really love my rings. The engagement is from my mother and it is a stunner! Ah well guess I can wear them on the right hand.Maggie
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I know this comment is crazy.....but do you ever feel like your in remission?
I do now.....For one full week I have had no substantial swelling or pain. My trunk is swollen but doesn't hurt and my upper and lower arm are minimally swollen but I feel no pain. so...experienced ones...let me know...how long do I have?
I want to bask in the feeling of being normal again. I know this is short lived..especially with the heat and humidity coming my way but I am hoping for a two week bliss
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Moogie:
I was told that Medicare will ONLY pay for treatment is the LE specialist is a certified PT. Anyone else and Medicare will only pay for a few visits for them to teach you how to treat yourself.
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Maggie- My left hand had become so swollen I had to have my wedding ring cut off at the jewelers. I cried like a baby. Something about seeing my beautiful ring cut like that because of stupid f'n BC/LE made me so mad/sad. I still haven't had it resized because I'm not sure what size to make it. Feels so weird to not have a wedding ring on and I'm bilateral so can't even wear it on the other side. Guess I could make it bigger and just wear it on my good days.
Just put my sleeves to the test and wore them doing some really deep cleaning on my house. I had a little pain but no swelling and after some MLD pain was gone in the a.m. Good to know I can still get things done with the help of the sleeves.
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Carol:
I had a double mastectomy, but the left side has more problems than the right. My main issue is truncal & breast, but I have also been fitted with stock sleeves for "heavy" work & gauntlets for airplanes only (at this time).
Wanted to note the price of my Belisse Bra (which I love) for $289.00. I cut foam to fit for spots.
I'm told Medicare probably won't pay for any of this, but my doc wrote the scrip for "mastectomy" garments instead of LE/compression garments, so we'll see.
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MinusTwo:
I am not on Medicare, but my insurance basically will not " recognize" anyone for LE threatment other than a full PT either...Thank goodness I insisted on a pre-approval process through my case manager to inform me of cost before therapy or I would have been in a hole.
Sometimes the way a garment coded for insurance makes a difference. When I got Reid Sleeves, insurance offerred to pay $13.00. Yeah....these sleeves are the price of a vacation. A nice vacation.They " coded" it the same way as a disposable bandage.
I fought, and got a personal CASE MANAGER. The insurance companies will not freely offer this, but if you formally request one---it will take years off your forehead. I recommend this to all if it is an option.
These folks are usually nurses who actually understand what is going on and facilitate the processes of caring for a chronic condition. Help with pre-approvals, etc...( I ask for pre-approval to scratch my nose!)
Got someone with neurons that fire at the insurance company and contacted our plan administrator...ultimately getting reasonable coverage. Because these items are not common, the medical billing people do not even understand what they are dealing with...
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I just had a tough week....I am not sure if it is the LE or a few pounds but I am having a tough time loving myself.
I was at a really cool cancer survivor event tonight, and someone started to take a photo of me with my sleeve on.
This is a huge social phobia for me.
I jumped up to get out of the way and spilled food all over the floor and guacamole all over my rear...and I was in the front row.
It was beyond humiliating.
I almost started crying.
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Aww, Cookie, I think everyone can relate to how conspicuous you felt after spilling something in an effort to avoid being conspicuous! I'll bet you extricated yourself with tremendous grace, but on the inside, of course you were mortified. My heart is melting just thinking about it. I imagine that most people had only lightening-fast kind thoughts to help you, and most would not have a clue why you wanted to skip out of the picture. We are our own harshest judges, and I think we feel much more conspicuous in our garments than is actually true. But how we feel is what counts...and you are so entitled to have a good cry over this one.0
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Cookie, big hugs to you. I'm sorry it was such a distressing moment. I struggle occasionally with photos when I am wearing my sleeve. Sometimes it bugs me, other times it doesn't. No rhyme or reason, probably more a reflection of my overall mood at the time. When it bugs me, I feel like I am having the equivalent of the worst hair day and want to avoid the camera!
Carol, I have a call out to my garment folks re full price of Solaris vest and what I paid after insurance. I requested the same info re the Solaris sleeve that will be ordered for me soon. I also asked them about the custom sleeve and glove I recently ordered. I must admit that I am guilty of not paying attention to cost when they call and say I have a balance due. I give them my credit card number and it goes through. My therapist tells me ahead of time approx cost, but when the time comes, I just want the darn thing ASAP. I looked through my files, but I didn't find receipts. For my situation, I will have a separate night vest and sleeve. Will let you know what I hear.0 -
Moogie, I could not agree more on the value of a case manager! I had one assigned to me from the very beginning, and she was fabulous, every step of the way. And I'm glad you mentioned it, because by incredibly odd coincidence, my daughter is responsible for developing continuing medical education training for literally thousands of case manager nurses at one of the giant health insurance companies.
And shhhh....(it's not really a secret, but it feels like a good one!)...I pestered her until she agreed I could write a self-study training course about LE for all those nurses, after I learned that their training barely includes the 'L' word. I write financial training for a living, but I needed to do tons of research and rely on some wonderful LE experts (thank you Binney, Kira, nitocris and others) to develop training about LE. It will be launched in another month or so, and the idea is to arm all those case manager nurses with accurate information about LE so they can bring it up, ask questions designed to discover if there are early symptoms, and to know what treatment is all about, etc.
This project is not going to make the insurance company magically open up their pocketbook to cover all the Grand Canyon-sized holes in LE coverage, but it's a start. Patient education is so critical to LE risk avoidance and to getting an early LE evaluation when we do get symptoms, and this course aims to give the case managers what they need to give some quality patient education while working through the BC treatment discussions.
Oh, and the work is all volunteer, and at some point the course will be available to any nurse who has interest (or anyone else for that matter).
So now that I explained this, I might also ask--does anyone have a photo of their arm with cellulitis? I'm putting lots of photos in, and this one I'm not coming up with (can't take Internet copy/pastes for copyright reasons). No identifiers, just an arm that shows what cellulitis looks like--not that nurses don't know what it looks like, but the photo is a way to cement the connection between LE and infection risk, to help prompt that part of patient education.
Carol
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Moogie, I could not agree more on the value of a case manager! I had one assigned to me from the very beginning, and she was fabulous, every step of the way. And I'm glad you mentioned it, because by incredibly odd coincidence, my daughter is responsible for developing continuing medical education training for literally thousands of case manager nurses at one of the giant health insurance companies.
And shhhh....(it's not really a secret, but it feels like a good one!)...I pestered her until she agreed I could write a self-study training course about LE for all those nurses, after I learned that their training barely includes the 'L' word. I write financial training for a living, but I needed to do tons of research and rely on some wonderful LE experts (thank you Binney, Kira, nitocris and others) to develop training about LE. It will be launched in another month or so, and the idea is to arm all those case manager nurses with accurate information about LE so they can bring it up, ask questions designed to discover if there are early symptoms, and to know what treatment is all about, etc.
This project is not going to make the insurance company magically open up their pocketbook to cover all the Grand Canyon-sized holes in LE coverage, but it's a start. Patient education is so critical to LE risk avoidance and to getting an early LE evaluation when we do get symptoms, and this course aims to give the case managers what they need to give some quality patient education while working through the BC treatment discussions.
Oh, and the work is all volunteer, and at some point the course will be available to any nurse who has interest (or anyone else for that matter).
So now that I explained this, I might also ask--does anyone have a photo of their arm with cellulitis? I'm putting lots of photos in, and this one I'm not coming up with (can't take Internet copy/pastes for copyright reasons). No identifiers, just an arm that shows what cellulitis looks like--not that nurses don't know what it looks like, but the photo is a way to cement the connection between LE and infection risk, to help prompt that part of patient education.
Carol
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Cookie - I just caught up with what happened - I am soooooooo sorry you had to go through that! I hope everyone was helpful and understanding...
I think I did something stupid.... I'm way too new to this... Being it is only the breast that is swollen - My DH and I decided to do some gardening - I followed the basic rules: hat, gloves, sports bra, long sleeve shirt.... put a time limit to an hour... we went about an hour and a half... I just sat down about 15 minutes and I have major shooting pains in my breast! What do I do? am I going to be in trouble? My first visit to have my Breast LE eval is Weds.
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Well I keep sending people here but now once again im back.
here is what happened to me.I was outside for exactly 5 min.at night Memorial Day weekend.I dont have LE but i did have edema.anyway i do watch carefully and i was wearing long sleeves but i got bit yeah 1 lill bite on my hand.I took care of it right away and thought i got lucky with the bounce in my pocket.
Now yesterday I found a lump slightly above my elbow.it does not hurt at all but i am worried.could this be LE?
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OOO Granny, I'm here for you.. its been kinda silent in here this weekend..
Maybe someone will peek in soon to answer your question... How can we be so careful and something crazy happens anyway! Me too, DH told me my breast looks swollen this morning... that's what I get for being ambicious and help put the garden in this weekend 
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It doesn't sound like LE, granny, but I'm no expert. LE is a swelling over a much larger area . . . unless I am mistaken.
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thanks both of you for being there for me
I did find a little lump on my shoulder and a little larger one on my wrist bone but i had an Xray and it was nothing.BUT that was on the other side.This lump is on the bc side and it really is scaring me.And this one also is bigger.My father had hodgkins and died at the age of 32.can you see where im goin with this???
just when im starting to let my guard down BINGO something else pops up.
Have i told you lately how much i hate bc?
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Granny, believe me, we all know exactly where you're going with this, because we all do it whenever anything even remotely suspicious happens.
LE can show up in exactly the way you're describing, in just a small area or in the whole arm. Some women have it just at the base of their thumb, for instance. An area just above or just below the elbow is a fairly common site for LE.
But that doesn't mean this is LE, and you'll want to check it out for your own peace of mind. In the meantime, elevate your arm as often as possible (and at night on a pillow), stay REALLY well hydrated, and whenever you think about it take a few deep abdominal breaths. All that will help stimulate your lymph system and bring down the swelling.
Be well!
Binney0 -
ERRRRRRRRRR!!!!! my arm is swelling again and I have been wearing my compression faithfully day and night and doing MLD at least 2x a day. My therapist is out of town until next week so guess I will be a balloon until she gets back. I am tempted to wrap it back up again. Makes me so mad. What did I do to trigger this??? Does anyone else have a problem with their sleeve at the wrist. I have quite a small wrist yet the sleeves leave a "dent" around the wrist. Have stretched them out and they are still doing this from where I bend the wrist. Any suggestions?
Maggie
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Does anyone know if insurance charges more if you get treatment for both arm and truncal LE? I finally got a break down of charges and for initial eval insurance was billed $350, 1st appointment was billed $365 and then the next 8 appointments were billed at $487. Can't figure out why the big jump except I pointed out swelling on my back after my first session. They were all billed under the same code, though, and every single appointment was only an hour. I called the billing office and they are looking into it but just wondered if someone was charged more for multiple areas even though appointment time was the same.
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