GRRRRRRRRR I HATE LE..........
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Thanks Kira, I just emailed that to her. I have such better range of motion today and my arm is soft. I know the lymphedema was making my shoulder worse, I should have kept up with my exercises. argh! hugs Terri
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Terri, we all do the best we can. Hard to keep up when you're in pain.
I knew my shoulder hurt when I was in the cast, but couldn't figure it out, then tried to internally rotate it (the scratch your back/take off your bra move) and had NO motion. It was frozen. The PT really helped.
Glad you're better.
Kira
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Kira, thanks for your thoughts on the hand LE. I don't really like hearing it, but it is good to know. It also makes sense that the hand would be the most difficult to control since it is the furthest away. I feel really good about my LE appointment today. Although my hand still can't get under control unless I wrap it, my arm is much better. Before sx, it was 5% larger than my other arm, at its worst it was 20% bigger, last time I was there it was 15% bigger and now it is only 8% bigger. Yahoo! I think finishing rads gets the most credit (finished 11/11), but I guess I was wrapping well also. He says I need a new sleeve, this one is too big now. I am going back next week with the wrapping still on from overnight and he will order me a new sleeve and glove and a night time garment as well. I hope this next glove works. The last one never did. Everytime I took it off my hand was more swollen than before I put it on. I am hopeful about not having to wrap every night as well too. I have been wrapping at night (and a lot of that time during the day too) since October 1st. It will be good to get a reprise from that.
Hugs and brownies to everyone! KittyDog and Terri and 3jays, hope you're all doing well, and everyone else too!
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Kay, I googled hand lymphedema, and there was a Q&A session on the NLN in 1999, by Bonnie Laskinski--great LE therapist who works in Long Island. Now the product she mentions isn't around anymore but the ideas are good,
http://www.lymphnet.org/lymphedemaFAQs/questions/question_07_99.htm
IMOQ: I am a compliant patient and follow all instructions from my therapist, but am terribly frustrated. Two months ago, I had a lumpectomy followed by radiation. Two weeks later, my hand became swollen. I was taught how to do self-manual lymphatic drainage and bandaging, and I wear my sleeve and glove every day. My arm is doing well, but the back of my hand is very stubborn. Often it looks like a pin cushion. Please help me.
A: You are fortunate to have had early intervention with your lymphedema. However, lymphedema of the hand is often difficult to reduce and finding a compression sleeve and glove combination that works can be tricky. You do not say how your hand responds after being bandaged at night. If it is flat/flatter in the morning, then you might need to look at the sleeve and glove you are wearing during the day and ask your therapist for some suggestions regarding alternative garments - maybe a different compression class or higher gram-strength (lower-stretch) fabric. I prefer custom garments to ready-made, particularly for the hand. Individual contours can be fitted better, achieving a more even compression gradient and minimizing back flow into the hand.
Perhaps a review of your self-manual lymphatic drainage and bandaging is in order, as well; check that you are being careful not to increase layers/pressure at the wrist or forearm which could force fluid back into the hand. If you have not had an intensive course of CDP/CPT/CLT to reduce your lymphedema, but have only been instructed in self-massage and bandaging and see no improvement in your hand, perhaps you should consider a course of treatment.
Also, do you have a dense foam "chip pad" for the back of your hand that you can bandage over at night? My patients find these very helpful to soften that area and help break through new tissue channels, increasing lymph flow through the hand. There is also a company with a line of products called Legacy that makes a glove of sturdy cotton material with foam chips sewn between the layers of fabric. The glove is shaped like an oven mitt with webbed fingers and is comfortable to wear at night with a compression bandage wrapped over it. Try not to become frustrated; there is no single easy answer and it may take a combination of things to improve your hand. Take it one step at a time so you can evaluate what improves the hand.
Kira
Legacy was the name of Jovipak initially:
JoAnn Rovig has been making garments for 12 years under different names; Legacy in 1998, Tri-D Corporation in 2001 and in 2008 switched to JoViPak Corporation.
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Well my appointment went well. My chest scan did show a pin size spot. My NP didn't seemed concerned after she found out I had an URI in the last month. All the other scans looked good to. I will do a repeat of the chest scan in three months. So I am happy today.
I also asked about a referral to a different LE Clinic. She agreed...waiting four weeks when two referrals has been sent is not good. So here's hoping that the other clinic is better! I woke up yesterday with my arm puffy. Oh and I haven't updated. I have now lost 11 pounds of Weight Watchers. It's slow coming off but I have been under a lot of stress since starting and I sure don't handle it very well.
Thanks for all the encouragement.
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Kitty: good news for the negative scans and the weight loss! Hope you get in to the LE clinic soon
Kay: thinking back more on the hand issue: I remember a summer, about a year into it, when I grabbed a heavy mattress, and my hand swelled up for weeks, and gloves just seemed to trap fluid up near the knuckles, so I would do a gauze wrap when I was home. We took a trip, and I had the hand wrap on for the entire 6 hours in the car. I have custom Juzo gloves, and it took a number of attempts to get the fit right. Hand LE--challenging!
Kira
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Kitty--Great news! Also congrats on the weight loss. I am on that journey too and I know how hard it is. Becky
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Kitty, hooray! (Whew!)
And the weight loss is awesome -- you must be so proud!
Onward!
Binney0 -
Contests on the clean scans and weight loss Kitty! And good luck with the new LE clinic, hope it rocks!
Thank you for the info Kira! It does confirm for me that I have a wonderful therapist. That is exactly what he suggested. He said he ordered me this relatively inexpensive sleeve and glove because he knew I was going to improve and need another one soon. Then when the glove wasn't working, he sent it back to have the band removed and gave me a glove off the shelf that was a better material to try. Now he is going to order me a custom sleeve/glove of the better material. And the original glove came back with the band removed, I had it on all day with a pad he made to put inside, and my hand looks perfect. Hope the new sleeve/glove will work like that from the beginning. Hearing some of the problems getting appointments or with therapists who don't know what they're doing, makes me very grateful for him and the clinic.0 -
Thaks for the responses everyone! Would I even be able to get a sleeve (ready made) to wear on the plane? I haven't been back to the LE Dr. in about 6 months. (New job to cover benefits and an upcoming divorce) so I can't take time off before the vacation. Now I'm thinking I shouldn't risk it. I don't know what to do.
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Valgal: with all the rigermarole i've had with my customs, i've bought both sleeves otc, and find the one from Jobst worked even better than the custom, when it came... of course, im new, still, but ANY is better than NONE for prevention; thats; for sure... also, i found i was pressure sensitive (thank you Bineey) and since i reduced from a 20-30 to a 15-20 gradient i've done much better. time for me to start again. the old glove is all stretched out, from pulling it on.. i looked, its almost 2 years old YIKES!! an appt to make ASAP!!!!
I was really jerked upright the other night... i was on u tube, doing music, and found a site for LE!!! it specializes in LE; specifically, MLD and is 10 min away from my house....nonone here, told me!!! i love my le therapist, but im so making an appt if i can, bf the 1st of Jan... thats' when my deductible starts w/ my ins... its the Sawgrass Medical something, something.. so, at the very least, another opinion will help!.onward, ladies.......3jays
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Valgal: as 3 jaysmom said, Jobst makes sleeves in three sizes--small/medium/large--so they're incredibly easy to fit, and they do make a lower pressure--below class1 15-20mm. You could get an off the shelf Jobst sleeve, and should pair it with a gauntlet for the flight.
Here's a page from an on-line retailer: brightlifedirect--they have a return policy that is generous--and Jobst is more expensive--at 51$, yet if you go through a DME retailer, with insurance, you'll find they bill them at several hundred dollars, get marked down by insurance to contracted rates, and you pay your DME copay. Often, the on-line people are less expensive, and they do have staff to help you with the purchase.
http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Armsleeves/c133_134/index.html?view=all
The Juzo dream sleeve is soft, and it's less expensive, although the sizing is tougher.
Good luck with all of this.
Kira
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Kira, you know how we've all talked here about how there's a certain amount of PTSD involved with our surgeries, treatments, etc? Well, I think I can safely diagnose myself as having. I have had only one other panic attack in my life, and that was years ago when I was working under very stressful conditions. Yesterday I had my second. My LE therapist got me an appt quickly since I have been concerned about my arm and flaring in my trunk. Since I don't go to her often, new paperwork is required when I arrive. Anway, I am sitting in the waiting room and the front desk person is bringing things back and forth to me, insurance card, credit card, another form, etc. I briefly look up and I see a somewhat familiar face, but I am distracted and trying to get things done before my therapist comes out. Suddenly someone comes out from one of the offices and calls a certain person's name, and I hear a familiar voice in response. I immediately look up and Bingo! I know who this familiar face and voice is . . She is my first PT/LE therapist who diagnosed my LE and never treated or taught me MLD, but instead had me doing exercises that made it worse and become a chronic condition. I started having palpitations and my heart was racing, lump in my throat, and what felt like a bomb or hole in my stomach. I'm freaking out, because what is she doing at MY PLACE? My place is hallowed ground, my SAFE place where I have been treated so amazingly well and felt kindness, compassion and genuine care. I have the presence of mind to remember that my therapist is going to come out and that I need to get a grip so I can get the most out of my appt since it is important. I start doing deep breathing and calm myself and complete the forms. When my therapist comes out, seeing her takes away the last of my freak out, and I am back in the present. She spent two hours evaluating and talking with me, and during that time I was fine. However, when I left and got out to my car, all the questions I had about my old therapist returned, and I just broke down. I talked to myself and thought maybe she is there to learn from the best and get her LANA cert. That didn't make me feel any better. I was very upset that this different hospital system had even hired her. Maybe she is just doing PT and not involved with LE. I have no idea, but I did not and do not want her there. It made me very angry.
This morning I talked via phone with a local friend who had BC and used same PS I did for recon. She's had her own set of problems with her one implant due to capsular contracture, most likely due to prior radiation on that side. Our PS played the same stupid games with her - she apparently is the only patient he's had who developed CC. Oh, yeah? He must have forgotten about me. Anyway, I told her about spotting old LE therapist and its effect on me, and that leads us to talking about the PS, and I soon realize that I am YELLING into the phone, not at my friend, but out of this seething anger that has never gone away. So many instances where my doctors could have handled things differently and spared me two years of pain. I get off the phone and think how grateful I am to have someone who used same PS and understands my frustration. As I return to my tasks, it occurs to me that while I know I have a certain amount of PTSD, I have never truly acknowledged how angry I am, or just how deep it goes. I have tried so hard to heal and to replace these terrible experiences with positive ones that include excellent and compassionate doctors and therapists. And I've done my part and continue to do my part to help future patients where I had my surgery not have the same experience. But my feelings just won't go away. I don't know how to move on. LE keeps me right there, raw, always aware of what has happened, what I have done, what I need to do, where I hope to go, and what I fear will happen to my body and health. And I am so tired of fighting with Blue Cross to get the garment that I need. I came to the conclusion this morning that I think I need some therapy.
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Oh Tina,
I strongly think we have PTSD after what we've been through, and the lasting "gift" of LE that is a daily reminder of the fact we suffered collateral damage through our treatment.
I sure hope your former LE therapist was there to get PT herself or learn something.
I also find that I can't forgive the professionals who I feel caused me harm--when that harm was avoidable--my breast surgeon who decided to rearrange all my breast tissue for "cosmesis" and made me responsible for the huge axillary seroma--and told me it wasn't her job to deal with my LE. The various LE therapists who didn't meet my needs. The oncologist in Boston who was casually cruel--I just don't move on either. I'm still furious.
I think we were minding our own business and then this came into our lives and we've had to deal with it.
I also think that LE has a stigma--I think of these boards and how many women would never be caught on them, and how much more fun it is to share beach photos than tales of compression garments.
I have found myself experiencing raw anger and a sense of betrayal, and fury at myself--why didn't I get a second opinion when it was clear my breast surgeon had her own agenda???--so there's guilt here too.
I've had panic attacks in the past, and they are horrible. They occured in the context of feeling like I was in an untenable position and had no options.
I find I will take out some of this anger on insurance people: like my Blue Cross never charged a copay for Tamoxifen, and they changed the insurance and now they do, but they discounted asthma meds. So I'm sniping at the mail order pharmacist that they devalue cancer treatment...Like she has any power in the situation.
Helping others does help, and so does staying active and engaged, but this stuff happened, and grief has its own time table.
Like we WANT to be on the lymphedema boards??? No, a bunch of stuff happened and we ended up here.
Tina, you've been through so much, and you're stll having to fight for the chest compression garment, and sometimes it's all too much.
Huge hugs and brownies and whatever else makes it better.
Kira
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Hugs and brownies from me too Tina. I was talking to my boss today and she asked how I was doing. I really do feel I am doing well even with lymphedema and now this heart problem and want to be positive. She mentioned my arm looked smaller in the sleeve, and I told her it went from 20% larger than my left to now just being 8% larger. Then she asked how much longer I needed to wear the sleeve, and I said permanently. Was talking to the therapist about it yesterday. The onc told me I would get to a point where I didn't have to wear it any more, but the PT didn't think so. I am okay wearing it and even acknowledging to myself that it may be for the rest of my life, but I don't like explaining it to anyone else. Makes me want to cry. And then I feel guilty because I know there are a lot of people are these boards who have a lot worse problems than I do. I guess it is a bit like PTSD.
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Kay, My sister always say that "it's not a zero sum game" (http://en.wikipedia.org/wiki/Zero%E2%80%93sum_game)
The suffering of others doesn't lessen or negate ours.
For two very stressful years, my younger daughter had severe migraines that required hospitalization and disrupted our lives--and I was told "at least she doesn't have something really serious, like cancer." And I was so angry: she spent her senior year of high school vomiting and dizzy in a dark room, socially isolated, and her suffering was her suffering.
So, I believe that we don't have to justify the significance of the impact of LE on our lives: yeah, it's not likely to kill us, but it still stinks.
Some days I'm better adjusted than others.
So, please don't ever feel guilty because your LE makes you want to cry,
Kira
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Thanks for the info everyone. I remember a long while back going to a site that someone recommended that had a kind of a both sleeve shrug type thing. Anyone remember that site? I have real big arms and I think this kind of garment would be better for me. They were on one of the sites with colored /designer type sleeves.
Thanks everyone again, Valgal
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Sorry, but I don't know Valgal.
Thanks Kira. I think your sister is right about it not being a zero sum game.0 -
valgal - Was it the silverwave sleeve?
http://www.legluxe.com/product/womens-shapewear/anti-arm-fat/compression-sleeve/S0433A5
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Dawn hope.. your little linky didn't work..try again.. i think itds that one, if its from lymphedema co... i sent Valgal a PM.. i have one in black, and absolutely love it!!! i just wish the darn back piece was a little wider.. they now make a bigger size, so i know they're still fine tuning it!
I absolutely agree with everyone about ptsd.. got dxed with it after my 1st cancerversarry, went to therapy, but its' still bad. i have to take zanax when ever im around crowds, etc...
i wanted to say: my reaction is like im drowning, and can't get air.. hence, the deep breathing excersizes, and "grounding" i have to do.. zanax helps, too.
this year, i've had less attacks, but am much angrier openly, when something is "getting" to me. i think there's a direct correlation for me. the quiet, good girl thing just doesn't work for my benifit, what can i say???....3jays
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3jays, there are all kinds of good girls, and some are louder than others.
Good for you for working out your own best way!Be well!
Binney0 -
Thanks Dawne-Hope and everyone else! That is the shrug thing I was thinking of - but I think there is another manufacturer also. Thanks everyone, I'll let you know what I find out . You guys are the greatest! 0
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thanks, Binney.. good to know.. i might NOT be on santas' "naughty" list then... hahaha0
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Dawn Hope: Are you the one who recommended the Wear Ease Compression bra? Seems like I read about it on this thread. If it's you - I have a question. If not, maybe someone else can chime in. I hate to whine, since technically I only have "edema" (swelling of the trunk maybe still there from 9/13 surgery) not "Lymphedema". Doc said to get compression bra & come back in 3 months.
No one in Houston had a Wear Ease bra so I ordered directly from the factory in Idaho. The first one was too big in the band. The one I got today seems OK but the gathers at the bottom of the cups show through my clothes. I could probably live with that, but the arm holes are cut so high I'm afraid they're going to chaff & rub my skin raw. Can anyone send a review of Wear Ease?
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MinusTwo - I provided a link to the stepup-speakout site but I didn't personally recommend that bra ... I don't know anything about it.
Glad KittyDog posted the reviews ... I'm sure some of the ladies on here can give you their experiences too. Hope you can find something that works!
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Oh girls.... I sat here reading... what I have missed since Thanksgiving....
.......I am so sorry for all your hurt ....... inside and out.........
I wish I could hug each of you today.LE sucks..... and our BC dx sucked even more..... but LE never goes away..... at least not yet.
I totally understand!
XOXO
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I have LE in the upper arm, breast and part of the side and I'm confused about the right kind of garment to use. My onc says I should have a compression bra or sports bra or something like that but definitely no underwire. My LE therapist says no, a sports bra comes up too high under the arm & a compression bra wouldn't be right for me. She says I should wear a seamless bra & large enough that it allows for expansion during the day & doesn't show any marks on my skin. I'm having a hard time finding one that doesn't leave any impressions on my skin. My arm only needs a sleeve when I'm in an airplane but the chest thing I can't seem to work out. Can someone help me with this?
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Fitz, Binney is away, and she's our chest LE guru--amongst others here--you can pm her. Here's a link to info on the stepupspeakout site
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
There should be info on chest compression garments
Kira
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Thanks, Kira. I had used that link and thought about one of the Swell Spots to put in a regular bra to see if that would help. They look interesting and I should probably take a chance and see if one would help me. I hate to bother Binney while she's away but I'll wait a bit and then PM her. Thanks for your advice.
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