GRRRRRRRRR I HATE LE..........
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I believe all post-op visits within the 90 days is considered part of the surgery. No extra charge.
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Carol
Thx so much for posting that !
I went to my 3 week post op and even THAT had cocerns apout breast LE! I know swelling at that time is not unusual, but I would have gone back before those 90 days were up had I realized! (I still have $3700 worth of co ins from that LX) That is great news for others, and I hope someone can confirm it. I'll start with some googling invesitigation myself.
In my case, I did not ignore symptoms, but only *called* and that is different than the DR seeing things. In any case, I was brushed off as if it was just about impossible to get LE w/out rads. I was pretty convinced by them until my wedding ring didnt fit.
At first glance, I believe Carol is onto soemthing.... looks like the 90 day post op may be considered a 'global
' period :
http://www.ciannamedical.com/assets/pdf/SAVI_Coding_and_Coverage_Guide_0112.pdf
http://www.supercoder.com/my-ask-an-expert/topic/office-visit-after-lumpectomy
I dont know if anybody posts on the ' surgery' threads (?) but I think this info might prove very useful.
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Yes I went back six weeks after my nipple reconstruction and was giving the receptionist my copay and she said everything within 90 days of surgery is covered under the surgery bill. I don't think he had to bring GMA in to go over her mammo though, so kudos to him. Or at least he didn't have to tell GMA she could do that.
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And thank you Linda for the picture of the jovipak. I think that might work better for me than the tribute. I am going to ask about switching.
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I really like it, it's a little challenging to get on the first couple of times, but they give you this sticky stuff that you lay on the counter and use it to push the sleeve up. It's comfy, it breathes, it washes easily, and it comes in several colors. They are spendy, but it counted as one of my compression garments so insurance paid. Unfortunately, I go on Medicare/HealthNet in March, and I guess they don't pay for compression garments, but it's going to cost me $600+ less overall per month, so I guess you can't have everything - I also have a JoviPak unilateral MX thing for my chest and back that I where under a compression or sports bra, day or night - it works amazing for my truncal LE. Ok, I'll stop now!
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Well, it was an interesting visit, BS thinks my breast is fine and i just have to live with the nerve pain.. I was telling him about the "costchondritis" my pain management doc thinks i have and the swelling in my right clavicle. He just said the clavicle can be more prominate on one side but do I have family history of gallbladder issues... gallbladder ultrasound on monday... Does it ever stop?? And he thinks, IF I had LE, he doesn't see where.. so I told him how I can be at one weight go have a full MLD done at the LE T's office and get on the scale the next morning and be 5 lbs lighter... He said, "Hmm" and started talking about the gallbladder again. I really think I am done with doctors, LE and everything... Why can't I have a good day and not have them believe I am fine and I don't have LE anymore.
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Gma - where is your "nerve pain", is that what he thinks is gall bladder? Sounds like a bad visit - so sorry. When I did have gall bladder disease, and had all the classic symptoms, including I had turned yellow from my main bile duct being plugged - the doctor I was seeing kept telling me I must be pregnant - sometimes I think they are all nuts!!!!!
Right now my LE hand looks pretty close to my non-LE hand, but usually it looks bigger, but not like elephantitis or something, but before all this my LE hand was actually 1 1/2 ring sizes smaller than my good one. I had my MO grab my arm, start massaging really hard from the fingers up saying, looks good to me (eye roll). Oops - sorry, I didn't mean to go on a rant too - hope tomorrow is better for you Gma!
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Kay - I agree with LindaKR about the Jovi night sleeve with stitched fingers. If you have hand swelling be sure to also ask for the palm and dorsum pads stitched in like Linda's (you can see the round palm pad in the picture.) I wish I had something that worked as well for day wear. I am going to try the one piece next. (After I get the Jovi paid for by insurance I hope... still working on that!)
LindaKR -- do you have any tips on drying the Jovi night sleeve? I put it in the dryer but the inside takes forever to dry, like a couple of hours even on high heat and the label says low heat. Maybe it is just my dryer?
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gallbladder ultrasound on monday...
Not saying the U.S would hurt , but I can tell you the symptoms I had with gallstones were UNbelievably painful...my very first surgery, and I am surgery phobic! ( My mom died young , after a botched surgery) WORSE than labor pain .My LE'ist asked me if I consulted my dr. about the 'lipedema' that she says I (also ) have. I just chuckled. She understood completely. She would know more than they and good ole DR Internet, does as well. It stinks!
Yes, Linda, my ring size is unusually small ( 4 1/4) so nobody would notice my finger swelling but me, unless it gets severe. ( which I am actually glad about) BUT if I showed them how my ring wont go on and did just several mos ago, it can be a good visual. My good friend keeps trying to console me about the ring. It's not about the ring!!! (grrrr) The ring is simply my ' proof' of how much ( or little) my LE is flaring that day. It's a decent guide for me right now, but also, a sad reminder.My wrist, OTOH is noticeable, but I swear that was 'odd' a solid 2-3 yrs ago! THAT I believe is the lipedema. I thought it was just ' something' from all my arm injuries. No dr. ever noticed it at all. I will take a pic at some point. It is kind of a 'hump' ( sounds attractive, huh ?) I often wonder if the compression sleeve is not really a good idea for the ' hump area' , but then I google lipedema and it recommends compression so ...
I also wonder how long it will be before I have my right arm/hand in compression.
OK, never even saw that rant coming. WOW! I would apologize, but this is the grrrrr thread!
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Kareenie--I had a jovipak and now a tribute. To dry I dry it with the towels I washed it with with three tennis balls in the dryer. I usually wash it very early in the am and dry it one hour on low heat. Then I let it air dry the rest of the day. It takes much longer if you do it by itself. If too late in the day it does take about an hour and 45 minutes. All of this advice came from Binney when I first got mine.
The "sticky" pad to help put on jovipak is called a dysom pad.
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Thank you Kareeni and Becky for the additional info! I appreciate it. I will bring it up with my PT on the 21st.
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My dryer must work too well. I put it on less dry and it is dry by the time it finishes, which is usually before the next load finishes washing.
Are you having gallbladder problems for them to order the ultrasound. Just wanted to say don't believe the results if you are having symptoms. My ultra sound and MRI came back as fine. I had the surgery on the radiologist suspicion's and the surgeon agreed it had to be gallbladder. Turned out I had greater than 50 black stones with three stuck in the duct. I guess there was a reason I was so sick and spent 4 days in the hospital for pancreatitis.
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Ouch KittyDog, Surgeon think all my rib pain and sternum pain is gall bladder - the breast pain - he tells me to live with but will give me narcotics if I need them.. I am on gabapentin now.. I don't think he believes that the breast pain can come from truncal swelling.. I told him it gets worse when I walk (swing arms) which in turn, even though it should help, swells my breast and the pain gets worse.. My LE T says I need to start exercising and stop before it gets to that point. Surgeon, now that the swelling is down
, doesn't believe I have LE anymore. I am now starting to doubt myself again. Time to call the LE T and have a chat I guess. 0 -
Kareenie - it does take forever to dry the jovi sleeve, I dry it = then kind of hang it as open as I can where the heat will blow on it, but if I want to wear it that night I have to get it started first thing in the morning - I wonder if putting it on a boot dryer type thing to hold it upon, then setting it on a heat vent would work better - just thought of that - I'm going to see if my husband can make me one, or maybe I can find one at a second hand store - I'll let you know how it works. That really is the only problem that I have with it!!! This year the offered to re-size them for free just before Christmas, but my arm hadn't changed enough for that - maybe next year
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My ribs and sternum NEVER hurt with gallbladder, though I did have horrible pain, but it was under my shoulder blade - plus I was horribly sick like kittydog - by the time they got in there not only did I have pancreatitis, but my liver, intestines, pancrease & gall bladder were very infected, I ended up with several different drains that remained until I healed, included a T-tube that goes into your main bile duct to hold it open - it was horrible. But rib and sternum pain - NOPE!
Edited to include rant I just posted on Kicking LE forum - -It's great when we find docs, pt's, ot's that listen and work with us, adapt the program to fit our needs rather than - follow the book!!!!! I wish that my cancer center had a rehab program - seems like sometimes we need to fight our way to knowledge and help. I feel so bad for those women that just go along with what their doctor says, it's amazing to me that the doctors and therapists that work in this field are so ignorant about things that their treatments cause or effect? Just a short 2 week course or less on LE - actually just one intro meeting with my LE -T would give them a ton more info than they seem to have - oooppps! - should this have been on the rant website!
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My ribs and sternum NEVER hurt with gallbladder, though I did have horrible pain, but it was under my shoulder blade - plus I was horribly sick like kittydog...
Same here ! One of the stones was caught in my bile duct and my bloodwork / bilurubin was completely off the charts. I was sick as a dog...vomited anytime I ate ANYTHING with fat in it. Havent eaten beef since ! ( almost 7 yrs now )
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Does anyone else live in the tropics? Wearing sleeves in sub Saharan Africa is awful. I have 'Divas and Jobst. Am in flare and looking for suggestions. LE just plain sux.
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She
I am sorry I cannot comment. Havent gone through a New England summer in a sleeve yet (UGH) Hopefully, somneone else will have ideas.
I posted the following on the " ALL things gloves and sleeve thread" and thought I would post here as well . I don't mean to stir a trouble pot, but I am curious as to any replies -
Btw, I happened across this little abstract, and I know it is not saying : " Dont wear a sleeve" , but it does imply (to me ) that perhaps they are not so effective ! I am wondering ... has anyone gone days or weeks without compression and if so, with what results ? http://www.ncbi.nlm.nih.gov/pubmed/17018707
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She, hello!
I'm sorry for the damp heat you're enduring. Our gals in the US South face the same issues, and hopefully some of them will be along soon with their own strategies. In the meantime, here are some summertime suggestions:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Summertime_Heat_Discomfort_in_Compression_GarmentsAnd in case you're near a swimming hole, here are some ideas for dealing with that:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Swimming_and_lymphedemaI live in the desert, where temps get excessive, but the humid period is short (thankfully!) I use a cooling neckband (it's filled with water-holding beads that continue to stay fairly cool), and sometimes a small flax-seed pack I keep in the freezer and stuff inside my cami against my chest. For clothing, I follow the example of mideastern desert-dwellers and wear loose clothing over my garments both to provide shade and to avoid restriction.
Staying well hydrated is especially important, so I keep careful track of how much I'm drinking by filling a container with the day's allottment so I can see how I'm doing and don't forget. In summer here, exercise is either in the water or indoors, and I avoid being outside during the hottest part of the day.
But I do keep my garments on, because if I take them off the heat makes the swelling even worse. Nasty business!
Stay cool!
Binney0 -
Purple, that study was published several years ago by Neil Piller, whose attention to the niceties of research protocol are not entirely rigorous, even though he's quite a force in the Aussie LE world. Still, all he's asserting here is that CDT is more effective at reducing swelling than garment-wearing and/or exercise is. Which is no surprise, since neither day garments nor exercise are used with the intention of reducing swelling, but of maintaining reduction that has been gotten through CDT, wrapping and self-mld. He is not saying garments aren't essential for maintenance, but that they don't usually reduce swelling.
That said, sometimes they do. If my hand is swollen and I put a glove on, the swelling goes down. It's all individual, and we need to figure out what works best for us. To do that, you start when your LE is in excellent control and you change one element of your maintenance routine (only ONE at a time so you can judge it's effectiveness). If you want to try going without garments, for instance, you might try it for an hour or two when you're not doing anything strenuous. If you don't trust your (obviously subjective!
) judgement, then measure before and later. Try to do it when the barometric pressure is stable too, and when you can keep track of what's going on without a lot of distractions. If you start to swell again in two hours, next time try it for only one hour.We're researchers!
Let us know what you discover.
Binney0 -
If my hand is swollen and I put a glove on, the swelling goes down.
Well, I have to say- I'll second that since getting my Farrow glove, Binney! As I always say- the proof is in the pudding!
I will be experimenting somewhat as my LE'ist recently suggested I wear my garments all day since I work and of course with exercise... she said if she were me, she would take them off early in the evening IF I am just hanging out ( couch potato style). Now having said that, she did say these are the very times when one can do extra MLD since there is no sleeve on and experiment with doing longer sessions so ... I may report back that I did well taking the sleeve off 4 hrs early, but IF SO, I'd be betting it was because of extra long MLDI have no intention of shedding my sleeve or glove except under the advice of my trusted LE'sit, but those kinds of studies make ppl. wonder.
THX
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Thanks for the excellent links Binney!
I'm very fortunate that my LE only flares occasionally, however my rt arm has had minor swelling for the 3.5 years, since bmx/diep as it was used for an IV. I do find that sleeves reduce the swelling, and I don them when I get to that uncomfortable state. Luckily I don't have to wear them all the time. This climate is too hot and humid for most North American clothes so I've gone local with my wardrobe and its helped. I do swim regularly and that helps too. I'm hoping someone from the humid south will come along and recommend a sleeve suitable for the climate. Sometimes I wonder what's worse, the pain from swelling or discomfort from the sleeves. Ahhhhh BC the gift that just keeps on giving.0 -
JO-5
I found your post surprising! Thanks so much for your view.
Best wishes to you.
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Hi ladies.....did not want you to think I forgot you all. Hope your as good as can be expected. Still dealing with LE, but decided I will not let it get me down. No one was able to get me where I needed to be, so I just accepted it as part of the price I pay for having cancer. Dealing with the disappointments, bad custom sleeves, expensive co-pays, and no real change, it was not worth the anxiety it caused or the headache from banging my head on the wall looking for real solutions. I wonder if anyone really knows what we go through. Had the cancer been this bad, I would have thrown the towel in 2 years ago. Compared to LE, that was easy. Diagnosed, biopsy, surgery, treatment, and it was over. Not LE. It goes on forever. Hope your all ok. Hugs
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Ducky.....NO!! They do not know what we have been through.....and where we might go on this journey....for myself with LE I do try my BEST to just truck on and not constantly talk about it.....that being said....a lot is always in the back of our minds....Liz
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decided I will not let it get me down.
Thats the ticket, ducky , but is there anything you decided you can do for yourself - for TX? I know that can be empowering.
Best wishes to you.
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I, just received the LeBed Video....watched it once....I think it is a keeper....Makes sense....will use it .... Liz
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Start easy, sandcastle--there's more stretching there than you think at first and some of the gals here have attempted the whole thing right off the bat and been sorry! Hope it really helps!
Hugs,
Binney0 -
She,
I live in the humid south and am very happy its January right now. I have two different brand sleeves, a Lymphediva sleeve and a Juzo Dream sleeve. I have found the Juzo one breathes better when the temp and humidity goes up. The other thing I found to help me is if my arm gets unbearably hot, I take off the sleeve for a short while. 15 min to an hour, and then when I put it back on it feels good again and I don't mind the heat so much. I actually find I swell more if my arm gets too hot so taking the sleeve off helps. As others have said...its an experiment!
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I am a Florida gal also. I love my Juzo dream sleeves. The fabric is the softest I have. I have them in four colors and love them. I also have two lymphediva sleeves and they are lovely but...the length of them is too long which makes them bunch a lot at my elbow and I think that makes my LE flare even worse. I stopped wearing them when I have any swelling at all because the fabric is also a little itchy to me esp in the warmer weather. The juzo is lightweight and feels great on the skin.
Maggie
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