GRRRRRRRRR I HATE LE..........
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Thanks for the help everyone. I'll contact my surgeon and ask for a script. I mentioned this to her at every follow up appointment, the last one was in April. She says its normal and my be something I I just need to live with, it may not go away. I'm not accepting that answer, I'd like another opinion. I am hoping a PT can help.
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debiann - Be sure you go to a therapist who is trained for LE patients. They are few and far between but important to insist upon. I've been going to a PT center for a broken arm that has 5 or 6 locations around the city with up to 10 medically certified therapists at each location. Only one person at only one of their locations has LE training. The 'step out' link should help you find someone.
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If your surgeon won't give you a script you can get one from M O or PCP. Really anyone on your medical team.
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debiann, surgeons are notorious for being in denial about LE, maybe because they "caused it." Several years ago I went to a physicians intensive about lymphedema (I'm not a physician--I attended as a patient advocate). There were several speakers from various fields. One was a surgeon. She started her talk with this line: "I don't fix lymphedema; I cause it." Few surgeons are able to be that straightforward!
Here's how to find a trained lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified...
Brava to you for seeking out more information--please let us know what you discover!
Gentle hugs,
Binney0 -
I'm starting to see the "in denial" thing. I spoke with the nurse from the BS office yesterday and told her what was going on. Asked if first any of my symptoms suggested that I should be checked or scanned to make sure they were not being cause by a recurrence. I'm due for an MRI in April and asked if it should be moved up. She said no.
Then I said I would like a PT evaluation to see if it LE. I told her I'm scheduled to get my nipples at the end of September, but with these issues going on I don't know if its wise to do a surgery right now till I know what's causing the problem. She said she would speak with the BS and call me back.
She left the strangest message today. It said I should see the PS about this problem and he will determine if I need additional surgery? What is that supposed to mean? I left her a message saying all I wanted was a script to see a PT for an evaluation not more surgery.
If I needed "more surgery" it would be because I had a recurrence and wouldn't that be the BS job? Me thinks they are blowing me off.
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Debiann - none of my docs were particularly interested in hearing my questions about LE. I finally got my GYN to write a referral and took myself to see the doc in charge of the Wound Care and Lymphadema Center at a major hospital. That's all he does, so of course he would recognize it, and got me to the appropriate PT people. Sorry you're getting the run around.
The other doc that is a good diagnostician & super understanding is my radiation oncologist. Even though I finished rads the spring of 2014, she has no problem writing me a script for LE PT anytime now or in the future.
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anyone have tips for donning the compression sleeve without hitting yourself in the face?☺
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LOL get a slippy. I spent 3 years hitting my face, then I broke down and bought one. It was the best thing I ever did.
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Hi everyone, I'm a member of the club coping with bilateral arm and truncal lyphedema. I've been seeing my therapist for MLD massage regularly and my Lymphpress will be delivered next week. Even with this summer's heat I've been quite stable recently.
Two weeks ago I took delivery of two sets of Lymphediva sleeves and gauntlets and they're the best thing that I've done for myself in coping with this b%&#h of a condition. I hate, just hate, my flesh coloured Jobst sleeves & gauntlets. They're really hot and look unmistakably medical. The immediate reaction from people is " Oh dear, what's wrong with your arms you poor thing?" If I try to camouflage them with long sleeves they catch the fabric unattractively and I end up feeling like I'm trapped in a sauna.
I've found the Lymphediva sleeves to be appreciably cooler and the gauntlets to fit much more comfortably.. The best part is that when I have them on I don't get those sad-eyed pitying looks. People are intrigued by them. Even strangers will ask about them - but with real interest, after putting two and two together that this grey-haired woman is unlikely to have full sleeve tattoos. Really, if anything can be said to be fun or stylish in regard to LE this is it.
My husband smiles and says I'm making lemonade out of lemons and I suppose that's true. - but anything that can lift our spirits about this miserable disease is worth considering.
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I saw my GP and he was much more sympathetic than the BS who wouldn't even see me. He agrees my issues may be caused by mild LE and was happy to write a script for PT to see if it can help.
Monday I will schedule an appoinment, but my bigger concern at the moment is whether I should go through with my nipple surgery on Sept 30. Am I risking more severe LE by going ahead with surgery?
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Debiann, when you call for the appointment explain your situation briefly and stress that you need to be seen quickly because of the scheduled surgery. (Squeaky wheel gets the grease--don't be afraid to argue for your needs!) When you see her/him, the therapist will be able to tell you the pros and cons of postponing or going ahead with the surgery, and hopefully s/he'll schedule appointments for some time after surgery in order to follow your recovery. Please let us know how it goes!
Gentle hugs,
Binney0 -
Hey, kmpod, way to go! Persistence and a bit of luck can usually land us good solutions to our LE needs, and you've done a great job with your "lemonade stand"! Summer ending is the good news for us lymphers north of the equator (condolences to our Aussie friends just heading into "swell" season--hang in there!) Onward to cooler weather and great control!
Be well!
Binney0 -
debiann,
I had a temporary flare up in my truncal and upper arm LE when I had nipple surgery. I think it was triggered mostly by infection around the stitches that appeared after a course of antibiotics. This was on a radiated breast though, but also my body seems to react with infections to stitches. This happened in hand surgery that followed later. I elevated my arm and massaged the areas. It didn't last long. My RO thinks the truncal LE is radiation related and it has gotten better as my breast has been healing over the years.
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KMPOD - Does your insurance cover Lymphediva sleeves and gauntlets? I have the Juzo "nude" color and agree they are very medical looking and attract unwanted attention.
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HI Mltdd,
No, the Lymphediva sleeves are out of pocket for me and the exchange is a killer. I'm Canadian and in Ontario there is some government coverage for sleeves and gauntlets from a program called Assistive Devices Program. Through them I get several pairs per year, two a time, one to wear and one to wash, every 3 or 4 months (I can't recall which). They pay 3/4 of the cost and I'm responsible for 1/4. I'm picking up my first set of custom sleeves with elbow inserts this coming week; and, they do come in a variety of colours and textures (I don't recall the brand just now). This set will be "graphite". If they work well I'll get the second set ordered in another colour, perhaps black or navy and just keep adding colours as time passes -anything but pink.I found that the regular sleeves caused a lot of chafing at the elbow. I'll use these for daily wear and keep the lymphediva's for "fancy" when I'm going out.
I'm not sure how widely known the program is or if it's been mentioned here before. I certainly didn't hear about if from my onc. My Lymph massage therapist did the ground work for me. There are a number of hoops you have to jump through including getting an official diagnosis from a vascular surgeon before your entry into the program. In future years my GP can write the script himself. They don't make it particularly easy to access.
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GRRRR - I deserve what happened today - ladies please learn from my mistake... I have been very lax wearing my sleeves, being very slight LE bilaterally, I went into a little rebellion and haven't worn my sleeves in a while. Including harvesting apples and tomatoes in our back yard yesterday. You know things like carrying a heavy bucket of rotten apples out to the front yard for the deer. This morning I started computer work and noticed my 4th and 5th fingers were going numb. Looked up my arm at my elbow and behold - major swell in my elbow... Guess who has her sleeves back on this morning?
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Aw, Gma, NOBODY deserves that! A few minutes of Lebed exercises, lots of water, some elevation, and those garments, and you'll be good again. Hey, the apples and tomatoes--and the deer--can be worth a bit of trouble! Hope you enjoyed your work yesterday immensely!
Gentle hugs,
Binney0 -
kmpod, just to let you know, I've corresponded with Josh at Lymphedivas, and he wants you to know that Lymphedivas garments are, if fact, available through the Ontario ADP and are fully covered. Ask your provider about it specifically, and if you run into problems you might contact Lymphedivas directly for help.
Lymphedivas is working with the other provinces to provide the same, but so far it's an uphill battle. The only other place they've made progress so far is Alberta, but possibly they don't cover the full cost--not sure about that.
Be well,
Binney0 -
I really liked the fun patterns of the Lymphediva sleeves, but they didn't provide enough compression and my LE got worse. An unexpected issue was that, because I live in Oregon where EVERYBODY has a tattoo, I got lots of stink-eye from people thinking I was a poser for wearing a fake tattoo sleeve (eyerolls from me on their culturally-appropriated body art, but whatevs). I got a Mediven sleeve with a built-in gauntlet and was feeling better within a couple of days.
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LympheDivas does have 30-40mm sleeves (as well as 15-20 and the default 20-30).
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I just got my sleeves a couple of hours ago. This is going to take some getting used to! The insides of my elbows are the only spots that are bugging me. Any tips for that area?
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tsoebbin, you might try putting some cornstarch into the toe of a clean cotton sock (close the open end with a rubber band), and pat that onto the area before donning the sleeve. Also, wear it for only a brief time at first and work up gradually to longer periods. Let us know how it goes!
Binney0 -
Next stop... Grocery store for corn starch!
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Thanks, ChiSandy!
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I'd like to start by saying thanks for the support I have received so far in my new issues with LE. I had my first PT appointment today and the therapist was great. She did the measurements which revealed definite increase in arm size from the elbow up. While it isn't a visual difference, its there. My main problem is in the chest area, so its trucal LE for me. She did a great job explaining LE and how the massage techniques help. I'll be seeing her twice a week for now. She believes it will be ok for me to proceed with my nipple surgery in 2 weeks as long as I continue with the PT treatments. She was happy to see that I sought help while the LE is in the early stage. She considers it to be reversible (hoping I can believe that). I appreciate those who encouraged me to pursue treatment after my surgeon blew me off. Thanks again. She also recommended I order a sleeve, for which I will need a script. Any advice on sleeves?
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Saw the LE therapist today for the first time. In addition to the truncal LE, I have some swelling in the arms and hands. I asked about the LE diet and she agreed that it may help because it's anti-inflammatory. I have been gluten free and mostly diet coke free & artifical sweetner free for nearly 2 weeks now. I'm also drinking lots of green tea. It seems to help some.
I will receive biweekly therapy and if that does not decrease the swelling then she will discuss sleeves.
Scottie
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Interesting article about retinoic acid research results with mice. Maybe help ahead in the future.
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I didn't know where else to post this. Someone recommended a "Go T shirt" some months ago to me. I had purchased 2 compression cami's that were sleeveless from another place. I only purchased one "go shirt" I believe it was "Go Athletic". Anyhow I only ordered 1. I wear a 2x and I tried to find their web-site today to order another, but I can't find it. If I went to the correct web-site they don't carry them anymore. It was a short sleeve compression T-shirt. I could really kick myself for only getting one, because it was only $20.00. It offered compression across my chest, and arm pits too. Since my LE isn't bad in my arms and hands, it was the trick for me! Does anyone remember someone posting about those T-shirts?
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Was this the conversation you were thinking of?
https://community.breastcancer.org/forum/64/topics...
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