GRRRRRRRRR I HATE LE..........
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Ladies, I have an appt with a LE specialist on Tuesday, was told it will be covered, but hate the fact that I have to go to a different place......There is one at the hospital where everything is being done, and the women is wonderful, but she is only covered by Medicare, and I have private , "I pay into medicare damn it, every friggin month they take $96.00 our of Social Security for Medicare...........I said where the hell is that money going, and her answer was "to pay for everyone else"................what the hell is that all about.........
So that being said, I will be going to another hospital for the LE treatment, and they had better be as good as this woman was who did my first evaluation, or there will be "hell to pay"
I am more concerned about the LE, then I am about the Rads.. I am livid the way they treat LE, like its something that is going to go away...................I was told the same thing as everyone else "you know this is lifetime"......I thought "really, do you think I just fell off the back of the turnip truck".........I was reading about LE before I even went in for the biopsy or the surgery........It scared the hell out of me, and then when I saw the pictures it was even worse............Well thanks for listening, and I will let everyone know how I make out. hugs
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hey gals, i ordered my bilateral sleeve w/ lymphedema sleeve co. today. you were so right! Susan, the owner, answered the phone, and gott the sizing for me.. she was so sweet! i told her we all are looking into them from bco..she was thrilled...gave me a tip to fit the wrist, then the arm, and smooth the rest in the middle, so im passing that along...night.. 3jays
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duckyby, good luck and keep us updated.
Bad bad day for me yesterday. Very long week, topped by a long day yesterday when I ws doing a lot of heavy repetitive movements. My arm was killing me. Got home last night as was talking to DH and said, my god my hand hurts. picked both of them up to show it to him and the LE hands was visibly more swollen and a different colour than the other one. Wished I'd still been at work so I could have walked around and said, see? I don't wear a sleeve for attention and to get out of things, see this hand
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kmmd, I'm going to quote Suzy here: LE sucks like a hoover vacuum cleaner
And why should you need to justify your sleeve to anyone????
My husband is the king of denial, so if he can see my hand is swollen, it's bad.
Just reminds me of when, many decades ago (she's 26), I was pregant, and was the first person in my training program to dare to have a baby and inconvience every one else, and when I got to 36 weeks, they decided I was term and no longer on the sick call program, and if I went into labor, I'd have to find someone to cover my shifts. I cried my eyes out--hormones--and the scheduler reconsidered. I had my daughter the day after the program ended, No one covered me for a minute. Their lack of support and understanding added so much stress to that final month.
Some things never change--your LE invconviences others????Get over it!
Ducky: I don't understand someone who just takes medicare. I hope the new therapist is good. LE is the Rodney Dangerfield of diseases-it gets no respect.
We have a page on stepupspeakout for providers, so if you run into uninformed health care providers, it may be helpful. Also, the National Lymphedema Network Guidelines for treatment and training of therapists can be helpful as you navigate this treatment experience.
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Kira
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I'm sure you must have idiots working with you.......like your trying to make a fashion statement........really that is so ridiculous.......they just have no idea....who would want LE, wear a sleeve, or anything related to LE to get out of work, or get attention., Hell I could get attention by flashing everyone and letting them see my right boob which right now is much bigger then the left side.............I'll give up LE for flashing........at least the worst that can come from flashing is I clear a room...............LE is forever..............Hope things get better for you........have a great Mother's Day
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ducky, thanks that just made me smile.
Kira, is it even legal to tell someone to get coverage for going into labor?
I've had a couple of people give "helpful suggestions" On things i could wear over the sleeve to hide it better. Not doing that. It is hot enough at times as it is to wear it, and really my thought is that if I can stand to live with it the least they can do is stand to see it
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KMMD--it predated FMLA--hopefully things are better now.
Why the huge discomfort with viewing your sleeve? I'm just not getting this--other than the discomfort of dealing with an illness they don't understand, and one that is visible.
Sure is a blame the victim mentality.
Don't want to make the observers feel uncomfortable here as you wear your medically necessary garments to control your chronic disease and allow you to function in the work place.
Kira
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I have been around a new group of people at work and wearing my sleeve. For me, my wierd post-chemo hairdo (I pretty much look like a dandilion gone to seed by afternoon no matter what I look like when I leave the house!!!) gets all the attention, no one seems to notice my sleeve/guantlet. (c:
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Omaz, I remember those days. I walked in to get my hair cut and the stylist started singing the sun will come out tomorrow and laughing because I looked so much like Orphan Annie with my tight bushy curls. It was the next time in when she kept going on and on about what an ugly color it was growing in and how it didn't match my eyebrows that I said enough and changed to another stylist
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Hi gang -- I have to go give a talk in an hour, but a quick update. My flight yesterday was short and uneventful and I drank a ton of water. I wore the "hand spider" contraption I devised out of Komprex (see above) on my hand, covered by my year old axilla-to-fingertip Tribute with a brand new outer jacket (gives an extra 10 mm Hg compression). Given that I am in the midst of a hand flare, I flew and it's hot and humid here, I looked pretty good last night. My arm looked completely normal and my hand not that much puffier than when I took off. I wore the Komprex, Tribute, Tribute outer jacket and Solaris swell spot to bed. This morning my hand looked very good.. The channels of Komprex are connected with a netting and, yes, they are a little abrasive. I took a pair of cuticle scissors and cut the netting off as closely as possible, but there was a bit irritation of the webbing. The other thing is that how well the spider works on my ulnar swelling seems to depend in part on having the Komprex channels on the dorsum angled slightly towards the thumb, rather than going vertically straight up the arm. It's hard to get it positioned correctly under a glove, but I'm getting better. OK - gotta go give my talk. -- KS
PS I failed at transferring a picture of the Komprex hand spider. I will try again when I get back home.0 -
Have any of you organized or particpated in the organization of a local support group for those with LE? A friend, who has successfully managed her LE for 15 years, and I (a relative newcomer to LE) are trying to get a group organized in our mid-sized city. We are hoping to meet soon with the administrator of a cancer treatment center that is part of a major hospital here. This center has social workers, dietitians, and others to provide support services but no active support for those with lymphedema. There is a loosly associated physical therapy center with therapists certified to provide LE treatment but you have to seek it out and not all of the staff of the cancer center are as proactive as one would like in recommending the therapists. We are going to talk with the administrator about the NLN recommendations for screening and measurement but what we want most is a way for those with LE to meet and talk about the daily challenges we all face. We hope that we could arrange for physicians, nurses, therapists, suppliers of compression garments, and others to meet with us on occasion but we want it to be more about talking with each other than about being talked to. Any advice?
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Ahew, I hope Binney comes along, because she belongs to a support group--not specifically for LE. In my town, the support group for LE is run by the therapists at a clinic where I didn't feel I got good care, so I've stayed away.
Binney gives inservices to nurses, oncologists. She would have the best advice. You could pm her.
If you haven't visited the site that evolved from this forum, here's a link to information for health care providers on it:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Good luck and let us know how you are doing with the support group: I think a moderator is good, or talks by various, informed health care providers and DME suppliers would be useful.
Kira
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Ahew, brava for you!
The National Lymphedema Network has a page of suggestions for starting a LE support group. It's here:
http://www.lymphnet.org/patients/supportGrpStart.htmBe aware that unless you specify this is a cancer-related LE support group there will be people there with primary LE as well. A few years ago there was a LE support group in my community, and it was a real gift to have the primary lymphers there too. It broadens everyone's horizons and gives you a great base for advocating, because the primaries have a harder time getting diagnosis and treatment than we do (hard as that may be to imagine!) Also, primary lymphers can be as young as neonates, so it also extends the age range and gives everyone a chance to help each other in surprising ways.
One thing to watch out for, though (and it's what killed the support group I used to attend) is that bc-related LE gets so much more attention than other kinds of LE that there can be animosity toward the BCers. I know that sounds nearly insane, but LE is crazy-making, and to be on the short end of this already very short stick can make for a lot of tension between lymphers.
There's a new LE support group about half an hour from where I live. I went last month for a VERY fun session with a Lebed Method exercise instructor. The group plans to have a dietician talk to them next month, and another meeting this summer will feature a "wrap-yourself" evening -- you bring your own wrapping supplies, and a couple of therapists will be there to supervise your self-wrapping and offer hints and tips. That sounds like a very worth-while evening to me, and a chance to update our skills!
Memorable meetings from my earlier support group included having a local fitter come and bring samples of new garment fabrics or styles; having therapists who attended the bienniel National Lymphedema Network Conference come and discuss the latest in research and developments; having a water aerobics night in a therapy pool.
Like you, I think the opportunity to talk together is really the best part of a support group, but with lymphers you'll have to be very careful not to let it disintegrate into just a gripe session. We have a lot to gripe about, but there need to be some solutions and encounagement as part of the package or it's easy to slip into a real downer. Also important is the availability of excellent information (probably in the form of a good LE therapist), to counteract the suggestions of patients who might urge ignoring LE precautions and self-care. Strong but flexible leadership will help keep the conversations positive and helpful.
It's a big undertaking, but so worthwhile. Go for it! Keep us posted!
YES!
Binney0 -
Our hospital has a monthly support meeting. lol Because it too is run by my therapist...which I am beginning to think aren't that great but you get what you can if that is all that is available. ugg.
I haven't been to but a few but here is what they have been about. Dietitian on what we eats effects our swelling, Pool Exercise, another Exercise person, American Cancer society. I missed all the important ones. lol EXERCISE
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Thank you Kira, Binney4, and KittyDog for your good advice. Binney, your comments about possible conflicts between primary lymphers and BC lymphers are particularly interesting and I would not have known to watch out for that. At this point, we are going to focus on cancer related LE but it may be that we would get more support from the local medical establishment if we broadened the scope, even at the risk of creating tensions among the group. Will have to think about this. We will keep you all posted on our progress or lack thereof and will probably ask for more advice. I have found this site to be so helpful but am aware that not all those with LE are as computer addicted as I am. For that reason and because a local community could help raise awareness among our medical teams, I hope we can create a support group that will be complementary to this wonderful resource. Thanks again to all of you.
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Hi all - I need some hand advice. I'm in the midst of a hand flare. I can reduce the swelling wearing a combo of a fingertip to axilla Tribute, a Tribute outer jacket, a palm swell spot and a Komprex "spider" on the dorsum of my hand Yesterday, I wore this contraption and kept my arm elevated for most of the day, only switching to my day garments + spider to give a professional talk. After 2 hours of wearing my day garments, my hand had swelled enough that the day glove was quite uncomfortable and my fingers were an unwholesome color, so I took off the day garments and went back to my hotel room. My hand was quite puffy (even to my "cup half full"/denial DH.) I tried elevation without the Tribute and MLD, but there was no change in my hand,
Wearing this Tribute contraption all day is not a viable solution in the long run as wearing it I have no movement in the hand or wrist, and I have limited use of my non-LE hand. I am discouraged and frankly scared by this recent turn of events in part because I have a brachial plexus neuropathy and I am beginning to get the shooting "electric" shocks that preceded the excruciating pain I was in 2 years ago. I can live with the electric shocks and my hand doesn't look that bad -- certainly nothing like the horrible pictures one can see online -- and if I knew that things wouldn't progress, I could accept this as my new baseline. But, I am afraid of the possibility of progression.
So, now to my questions. The swelling is pretty much restricted to the ulnar half of the hand, with the dorsum being considerably worse than the palmar surface. Has anyone found some MLD tricks for the hand that work for this type of swelling? What's the best path to direct the fluid?
Based on what you all have said hand, wrapping can make a big difference for hand swelling, so I want to learn how to do this. Here's my second question. In the past, my insurance company has denied more LE sessions because the difference between my 2 arms is < 2 cm. This is still the case as the flare is restricted to my hand. I am going to beg my favorite LE therapist to see me one time for an evaluation. I will be required to pay before the evaluation and, even if I could afford to pay for additional sessions out of pocket, she only sees patients who have insurance coverage. What can I ask her to do/document to increase chances of getting insurance to say yes? KS1
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KS, Kira and I have both noted a sense of something like panic and despair that accompanies LE flares. Over time, and with the input of all the other women here, we started to suspect there was a physiological connection, not simply an emotional one. Some recent evidence has pointed to that as a real phenomenon -- as far as our physical bodies are concerned, the lymph system rules!
It affects everything. So take a deep breath and give yourself some room -- that sense of dread that this new flare marks a state that will never go away is not a reality, it's a bodily response. This, too, shall pass!But, yeah, you need to learn to wrap your hand and arm. There are wrapping "tricks" that can help you target the troublesome areas, too.
Your insurance company needs educating, so a barrage of educational materials faxed to them by your oncologists office would be the next step (you gather the material, they fax it along with a letter you dictate to them explaining the medical necessity of further therapy). It's a lot of work and it's aggravating, but with determination (and a LOT of paper) it's your best bet for assuring on-going responsiveness from the insurance folks. (My own appeals process eventually involved taking my DH and two kids and a picnic cooler to the insurance offices, taking up the few chairs in their reception area, and smilingly assuring them we were prepared to wait as long as necessary to speak to someone who could solve our problem for us. Somehow they magically came up with the person with the power to make the changes!) Whatever it takes....
If the Komprex is irritating your skin between the fingers, that alone could cause your hand to flare. Or possibly the compression of the daytime sleeve on the Komprex (which would be greater than with the Solaris, which tends to spread the compression better over a wider area) is causing a rebound reaction. Keep experimenting -- gently! Check on any new arrangement every hour or so, so you can stop promptly if it's getting out of hand.
Whatever else you do, don't accept this as your "new baseline." You need the help of a good LE therapist, and you need some better "tools" for your self-care toolbox, and you'll find a way to make that happen.
Hang in there!
Binney0 -
I actually had a GOOD LE experience yesterday
. My right arm was flaring so I was wrapped, but I screwed up my courage and accompanied our daughter to a raffle she was looking forward to anyway. In the end, she won something and I had to go sign for it. It was crowded, and the woman in charge didn't notice my wrapped arm until I went to sign the paper. Without missing a beat she said, "Oh, I hope your arm gets better!"It struck me as a perfect response -- sympathetic without sounding shocked or nosey -- so I just had to post about it here, because you gals will "get it." We cringe inside when somebody notices and then they either try to act like they didn't see it or say something stupid. But it's never occurred to me to wonder what they should do or say, until this woman got it right.
Bingo!
Binney0 -
KS1--Your insurance company needs to know that a 2 cm arm discrepancy is not the "gold standard" of diagnosing LE--in the CMS technology review on the AHQR site, they noted that this "rule" was created by 2 PT's for one study and has been widely adopted as significant--with no scientific study. Unfortunately, the CMS review concluded the 2 cm discrepancy was "easy" and should be the gold standard.
There is a full length article from AW Stanton, that is free on the web that talks about diagnosis of LE and how the 2 cm discrepancy is not a valid measure--also, if it is meaningful at all, it's on arms, not hands.
Http://britishjournaloflymphoedema.com/journal/0101_arm.pdf
http://britishjournaloflymphoedema.com/journal/0101_arm.pdf
You have lymphedema and you're experiencing a significant change--they should treat this as medically necessary. Can you get an MD to back you on this?
I think you're near NYC, so you might want to meet with Kathleen Francis sometime, she's in NJ.
Dr. Kathleen D. Francis, MD
200 South Orange Avenue #114
Livingston, NJ 07039
(973) 322-7300I found this article in the medical care of cancer patients about "sickness" in cancer patients, and how it's due to inflammation, and it's normal for a flare to upset us, but we tend to get beyond upset and I'm sure cytokines, etc are responsible.
This is sort of an emergency in book, and I think that your LE therapist should see you, with a doctor's order, and take care of you.
If you are in NYC, there is a great LMT, LANA certified who worked with Robert Lerner, etc, she doesn't take insurance, but she's reasonable and really, really good and a hand specialist. She doesn't use the internet, but she can be reached by phone: she was the partner of my LE therapist
Mary Read, LMT, CLT
Lymphedema Treatment, Private Practice, Tel: 212-396-2350
For MLD for the hand, I clear the proximal areas--neck, chest, inguinals, upper arm, lower arm, and then I do some clearing at the wrist and then stationary circles between the MCP joints, then the fingers, then the palm, then under arm, and then back to the dorsum. At the end, some full arm sweeps.Let us know how you make out.
Kira
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Hey Kira,
Is it really really a fact that everyone who has mild LE is at risk for developing severe LE in the future?
Thanks. I appreciate the info.
C--
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Scareds, in rare instances mild LE can appear to resolve, at least for a time, sometimes for years.
But lymphedema is staged, just like breast cancer is. Without treatment it will progress. Progression doesn't always means an increase in swelling. What it really is about is tissue changes inside our bodies. The stagnant lymph fluid is protein rich, and the protein molecules are irritating to the skin and internal tissues. In an effort to protect itself, our bodies produce fibrosis (hardening) and abnormal fat deposits right under the skin that cause the arm (or chest/breast) to become permanently swollen and tough. Eventually the skin is affected, with both texture changes (peau d'orange) and leaking lymph fluid, which is caustic and leads to non-healing sores.
Also, the warm, protein-rich fluid is the perfect breeding ground for bacteria, which can result in infections like cellulitis and erisypelis, that can spread rapidly and become systemic.
The good news is that treating early-stage LE can prevent or slow progression, reduce the risk of serious infection, and make on-going control much easier.
The trick is to find a well-trained and competent LE therapist who can steer you through the necessary therapy and help you keep the lymphedema "mild"! Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmI sure don't want to scare you (or anyone
!) but even our oncologists and surgeons rarely understand the implications of not treating early stage lymphedema. We have to be our own best advocates on this.Be well!
Binney0 -
Thanks so much for all of the info ladies. I've just been reading the past few days. My swelling seems to be down, but since there wasn't much to begin with it's hard to tell. My arm still hurts though so that makes me think it's still there. I'm going to get a second opinion today since I don't feel the LE specialist I am currently seeing is doing anything for me. I've seen her 4 times in the last 5 weeks. Doesn't sound like what I should be getting. And just reading what you posted Binney confirms that even though it may not be detectable to the naked eye, it still needs treatment. I'm 26. I have a long life to live and I don't want that protien doing a number on my arm! So thanks again! I'll let you know how it goes.
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I am developing a bump on the out edge of my elbow, above the elbow if you were looking from the back. It isn't really too sore but it is getting larger. It's where you rest your elbows on the table if you put your chin in your hands. It is on my LE side. I am wondering if the sleeve compression is irritating a tendon or something. Any ideas for me?
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Omaz, ARE you resting your elbow on the table and putting your chin in your hand? That causes my elbow to swell, and sometimes my upper arm as well. I just don't lean anything on my arms anymore, even my chin.
Just a thought....
Binney0 -
Omaz, you can get an olecranon bursitis, which is like a fluid filled "golf ball" off the elbow-check out this link and see if it looks like it
http://orthoinfo.aaos.org/topic.cfm?topic=a00028
Kira
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kira and binney - Thanks! It's higher up than the bursitis picture. I didn't think I was leaning on my elbows but now I am going to pay more attention. I think I'll switch my mouse to the other hand for a while. I had a doc at work look at it and he said it was nothing to worry about but didn't say what it was. I am sad today, my good friend at work just told me she has endometrial cancer. She is 61. I am going with her for her CT scan next week. Cancer is awful.0
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grrrrrr I knew yesterday I was swelling and it's still there today. It's not my arm it's the trunk again. Feels like I have a golfball under my arm and I have a baby boob on my chest. I now believe that MX Bra's are the cause too. I normally wear my sport's bra one but this weekend switched to the MX one that I bought last fall. Sure hope this sport's bra one doesn't go out of style. It seems to work for me and it is a MX one.
When I sit at my computer to long my elbow hurts even though it is on a pillow. I work hard at keeping that area down with MLD now. So far so good. Good luck with your elbow.
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kittydog (I like your name!) sorry to hear about the swelling! I hope it gets better - toss that nasty bra!0
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I've been lurking on your thread and it has re-ignited my early concerns. BMX in Feb. with SNB on both sides - two nodes removed each side. Nodes were clear, clean margins so fortunately I don't need radiation. Expanders in place for eventual implant exchange. I've been told by my BS, my onco and my PS that I don't ever have to worry about LE. Also told I can go ahead and have blood drawn or pressure taken with either arm - or any other darn thing. Some of the theads I've seen sound like this isn't true. Can someone confirm or deny?
For two months now the ring finger & baby finger on my L hand go numb off and on - like if you'd been lying on them & they went to sleep only I'm not. Happens maybe twice a week. Surgery was more extensive on my L side since the tumor was much bigger. It happened w/my R hand only once. I can shake my hand and the 2 fingers wake up. This last week L hand occasionally gets tingley (prickly) & feels like I hit my 'funny bone'. In fact my elbow feels tingley. BS & Onco said last month to let everything heal more. PS today (3 mos post surgery) said I should go see a hand surgeon if I'm worried. Does this sound like an LE issue? Should I dive in and do more LE research or assume it's something else?
You ladies all sound so brave. Thanks in advance for any comments.
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MinusTwo - I'm no doc or LE expert but I will share with you what my experience has been. I too had a DMX with sentinel nodes removed on each side. During the end of my fills, on the drive home, I noticed tingling and numbness in my fingers and shooting pains down the backside of my left arm. My fingers swelled up and as quickly as it came, it went away. My next fill, my fingers swelled up again but within a day it went away. I didn't have a clue what it was. At that point I was done with my fills and waited for the exchange. It was during that time I went to visit some friends in Chicago ... it was extremely hot and I was carrying a backpack. My fingers swelled up and stayed swollen. Over the next couple of days I walked a lot with my friends in the heat and my fingers were HUGE! They really hurt too and the swelling didn't go down. On the train home I sat with my arms elevated (I knew nothing about LE at that point) and it helped. When I got home I got on these boards and started asking questions. For me, it was LE. I hadn't a clue that you could get it with sentinel removed and I even asked my BS before I had the surgery and she said that I wouldn't have a problem with only the sentinels removed. My PS blew me off when I mentioned the swelling and pain... he actually said, "If it is LE it's very mild. Don't worry about it." Really???!!!!! GRRR.
Others more experienced with LE will answer ... but I'm example of one who did get it with only sentinel nodes removed, no radiation and so far it's only been in my fingers. So hope it stays that way. I do have pain and the feeling of fullness in that arm, though.
Edited to add: The TE's can cause nerve pain and that may be why you're experiencing the tingling and numbness in your fingers. When I was seeing an OT lymphedema specialist ... she thought that my left TE had sat on my ulnar nerve. When she worked on my shoulder I felt tingling and pain all the way down my arm to my ring finger. LE issue or nerve issue? Some of it, at least, was due to nerve. I so hope that yours is just that your TE is sitting on a nerve.
Diagnosis: 9/2009, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2-0
