GRRRRRRRRR I HATE LE..........
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JO - great news that you've found a competant & caring therapist. Glad things are improving.
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Joanne -that's sounds like my PT. I'm thankful you found a good PT and someone with some real knowledge!
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I ordered it myself and took it to my PT to make sure I would be using it correctly. I ordered it from a place that would accept returns just in case.
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jo sounds like you got a good team going...finally.
I buy everything but custom from brightlifedirect.com Excellent return policy and they will spend time with you on the phone.do ph them to see if they will take back circaid before you order it. I think so if you don’t trim it.
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hi ladies,
Tuesday I cu t my finger on my LE arm. Went to urgent care.....said to them that I had a few hiccups here.
Stage IV, LE, and platelets at 40 🤔😳. Got 8 stitches, and so far so good.
Now I am having trouble with my "good" arm. Lots of pain.....gotta figure it out. I have a feeling my C spread to nodes there and are chasing a problem. I am already in treatment, as much as my platelets can handle right now. Just not fun to have 2 arms hurting.
I need to look up circaid
Susan
Live and love ful
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ok...I have that...lol....it does work great for me. The wrap gives me hives, but the circaid doesn't.
Good luck with it
Susan
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Susan - YIKES! I thought LE only had 3 stages. .I didn't know there were 4!
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ok..".maybe my bad. I though le meant lymphadema. I am the worst with short cut words and spelling
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Susan - yes LE does mean lymphadema.
Tore the skin on the arm on my bad side this morning. Hello rose bush. My bad for not wearing my elbow length gardening gloves, but I was just going to cut off a few dead blooms. I cleaned with soap, then hydrogen peroxide and finally alcohol before applying neosporin.
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Oh no! MinusTwo -I know you will keep a close watch on it! Sending healing ~~~~ vibes~~~~~
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Jo - doing OK so far - thanks for asking.
Thanks for posting the pictures of the LE stages.
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But you still like working with her? Has the red ever subsided?
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I am new but have been reading from the beginning. I am seeing my LE therapist today again. I have yet to be measured for a sleeve. I had to stop going for 3 weeks because I had to have another surgery. I had seen her 4 times at least before. She had not taught me anything about exercises, or given me any direction. Getting a LE trained therapist in my area is tough. They are far and few between. I am hoping for someone to tell me what I should expect from the therapist. I want to get a sleeve and I want to get a machine so I can do this everyday. I feel lost and the only thing I have to go by is this site and the videos I can find on the internet.
Thanks. I will go back to reading page by page. I am now on page 26 of 328. Yikes this could be full time job.
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Kandy - Welcome but sorry you had to join us. The very first thing my LT/PT was measure me to get a base line - since i didn't have that done before surgery. The next thing she did was to show me how to do beginning MLD. After the 2nd visit, she checked to make sure I was doing it correctly, and then taught me more advanced techniques & moved on to other things. If you don't mind posting your location, there may be others on this site who have found someone in your area.
If you haven't run across it yet in your dedicated reading, the web site below has a wealth of information. It was created with input by several very knowledgeable BCO ladies.
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I posted here in late spring / early summer. My breast swelled after chemo ended. MO sent me to LE therapy. Before I started therapy, I got streaks above my breast. PS put me on antibiotics. No improvement after a month. Had breast MRI. Showed widespread pus, but no abscess. Surgery to replace the implant. PS found area of dermal matrix hadn’t integrated. It was hematoma, not pus. I was on 2 weeks IV antibiotics followed by several more weeks of oral. About 3 months total antibiotics
There is still mild red discoloration above the breast where the steaks were. I guess it's like a scar. There is still swelling in the breast, but not as bad as before the implant replacement. It feels hard around the implant. The outer skin is pretty soft. I've had an ultrasound, and it showed only mild edema. I've been doing the LE massage I learned the first time around, and PS has referred me back to back to LE PT. I have a fold in the skin on the breast and scar tissue. That plus the infection is what I suspect triggered the LE. I only lost 3 nodes with the mastectomy.
PS is doing a revision sometime this year. It scares me to mess with it, but I want him to fix the fold and break up the scar tissue in hopes that will help the drainage. I had a bilateral mastectomy and reconstruction. The non-cancer side is fine. Soft with no sign of LE.
I've struggled finding bras. The LE breast and underarm are so sensitive! It's getting better, but still bothersome. I wore Tommie Copper compression camis up until a few weeks ago. I just read that breast cancer survivors shouldn't wear copper clothing. UGH! Wearease camis are torture under my arms.
Breast LE ladies. I’m still not convinced something else isn’t going on. Implant rejection maybe. How do you know for sure it is LE
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Minus Two--I live in the Windermere/Orlando area. I saw the MLD specialist on Friday. I swear she is a hack but according to everyone she is not. she did measure me the first two times I went. I have LE on my left side. But she worked only on my right side on Friday and gave the left side a once over but worked a lot on the none effected side. I am so confused as this is the opposite of the last time I saw her. I asked about getting a sleeve and she said its not time yet. I asked about bandaging my arm so that the swelling would go down and she told me that it may help but is a lot of trouble. I explained I was up to the time and trouble and she got all weird on me. I am confused as to why she has never showed me how to do self message and what I do do I have learned from the internet and this site. She says that since my case is "not that bad" I just need to suck it up. Of course, not in those words but diffidently feels that way. I sleep with my arm elevated and when I am sitting I do the same thing. I have cut all extra salt and salty foods out of my diet.
Tahnks for letting me vent.
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kandy, can you look around for another LE therapist? Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified...
Aside from the baffling treatment you've described, NOBODY needs a therapist with a "just suck it up" attitude. LE is chronic--you need someone who's 100% on your side!
Gentle hugs,
Binney0 -
i had tissues transplant for reconstruction. Wish now I would have done nothing. I am tired of the pain of swelling. Under breast, over breast, sides of breast now up to pecs. I wonder if I didn't do recon, would it still be swelling. Right now lymph nodes are growing with cancer again.....so I can't blame lymphedema on that I guess. I ask my doc why we can't vacuum out the stuff in the nodes??? Just like liposuction!! I think it sounds perfect. He said no. I am just trying to help 🤔😉
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jo, what are the good sites to go too?
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Susan... Please try not to second guess your recon. I have LE and didn't do recon. It's just happens. Sorry to hear about the nodes. I'll invest in the super duper vacuum! Great idea. 🌻
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thanks Joanne. The Velcro wrap was given to me when they came out kinda "new". When I wear if all the time, my arm gets close to normal. Just a hard thing to keep on for me all day. I am still working a very little bit, as a hairdresser. Can't work and wear it. But it really is great when I wear it. I can't wait till you get your
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Jo, I don’t understand why you need to be measured before ordering the circaid. The beauty of the thingy is you adjust it as needed. Regarding the hand part of the contraption, you trim it to fit after you get it. Honestly, I had zero issues with ordering it and taking it to my therapist so she could show me the proper way to use it.
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Not sure if this is the one you mean, Joanne, but BrightLifeDirect is having a Circaid sale right now. Also, take an extra 10% off with by using the code TEN4MED.
https://www.brightlifedirect.com/circaid-arm-reduc...If that's the one you want, it might be an auspicious time to buy it! (Just to be clear, I have no affiliation whatever with BrightLifeDirect, but I've bought some products from them and love their customer service. Good folk!)
Binney0 -
Have any of you that use a pump had an issue with the Velcro on your lower garments losing some of the stickiness" / adhesion? The tabs that snug up the waist often come undone, even though I've only had the pump a year. I've become fairly adept at holding the waist tabs in place as I gracelessly fling myself onto my high Queen Anne bed, trying not to bend, but it's not pretty and I sometimes get so frustrated that I give up for the night.
I recall the pump rep saying insurance will only pay for new garments every five years. If I make it that long, I'll be on Medicare & doubt they'll pay anyway. The heavy garments contribute to night sweats so they'll probably require fumigation by then. 🤢
Thanks, Lyn
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I don't know why it isn't taken seriously. Even my doc, who is a great onc, has never asked me about my arm. And when the other started to swell, not sure if it's cause of nodes or what, I said do you want me to pull my top off so you can see it.....not just feel around,.....cause it does look real swollen. He said no.
Why, why is this ignored. I don't get it
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Question for all the LE ladies. Have you ever had a contrast dye mammogram? I am scheduled to have one soon and it will be my first mammogram done this way. I just mentioned it to my PT last night and she asked why the ordered one that way. I assumed its because my LE boob is so lumpy. She told me to do my research and reach out to my "LE friends " for information.
Susan- I do the samething with my Flexitouch! ! I hold it and fling myself on to my bed! Lol.. so yes my lower velcro is not hooking as strong. I will just replace it myself when it totally loses its grip!
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can't help you. No bobbys left here 😳
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Ladies in the U.S., YOU CAN HELP get Medicare to care about LE. We currently have a bill, called the "Lymphedema Treatment Act" before both houses of Congress. It will assure that LE treatment and garments are paid for by insurance. If you're not yet on Medicare, consider this: most insurance companies look to Medicare when considering what to cover, so when Medicare doesn't cover it, we're all at risk. Thanks to the dedication of so many lymphers, the Lymphedema Treatment Act is the bill with the most sponsors in Congress. (Yes! Amazing!) Even so, this Congress being what it is, we still need all the voices we can raise to make sure it gets passed before the new crop of Representatives and Senators take office in January and we have to start over with convincing them to sponsor the bill.
Please go to this site and learn how YOU CAN HELP with a few simple phone calls or emails (phone calls are better.) Better yet, show up in person at any events in your home district and make sure your Sens and Reps know how to vote on this one:
https://lymphedematreatmentact.org
We can do this! YOU CAN HELP! Please do!
Binney0 -
Thanks for the responses. I have two large, heavily coated dogs. Despite my best efforts, I'm sure some dog hair gets nabbed by the Velcro so that may be contributing to the problem although I have no issues with the Velcro on the chest, arm, or thighs. It's only the waistband. I'll have to try the tweezers. My pump is a Flexitouch, Varga.
I've not had a mammogram with contrast so can't offer any input.
Lyn
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In the past I had custom one-piece glove/sleeves because using two pieces caused addition hand swelling, but now that I have Medicare, it's not covered, and they cost 700+++, so needless to say I'm trying to find something that will work.
I say an experienced fitter and she recommended, in fact sold me, Jobst Bella Strong glove, which is longer and the Juzo soft sleeve. I've worn it 2 days now and I notice that the Jobst seams appear to be pulling apart, and the palm of the glove is already pilling a little. Also, first day way more hand swelling because of the double compression, but the second day I put the glove on first so that i was under the sleeve and that seemed to work better, but it still seems that the double compression is an issue - do you know of a sleeve that has less compression at the wrist, or any other suggestions would be great. Thanks.
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