Presenting the NEW Breastcancer.org Lymphedema section!

Mountain gem, Most of the time I wear Juzo without any silicon top or tight band. It goes over the shoulder and is held on with a strap that crosses the opposite side of the body. I find it more comfy than a silicon band which sometimes gives me tight muffin top. Today I am wearing a silconbanded version and I find that my LE doesn't drain as well. I like the strapped garment but you can't wear a deep v neck as the cross strap will show. It comes in 2 lengths and max size in upper arm and a couple compressions. There are a lot of variety for sizes. It is juzo 3512. Brightlifedirect sells them online for about 57 dollars aprox. This is an excellent online website to shop at, A lot of us shop there as their customer service and return policy is great.

Thanks purple… good to know

If you are buying off the shelf I highly recommend: www.brightlifedirect.com but I do hear there are others. Also watch, they have specials on certain manufacturers from time to time.

Thanks Everyone! Yes, I've tried Mediven, Juzo, Jobst and just about everything else on the market... My therapist ordered a pump and a night garment for me so I'll at least have something when I can't wear the sleeve. I'm wearing Jobst right now, which is the nearest thing to something that works for me. I just can't wear one everyday or my skin would get infected from the rubbing. It doesn't have a silicone top and my therapist sewed a piece of silky material inside the top cuff part that goes on the inside part of my arm. That's where I have the problem. It isn't perfect because it's hard to keep it straigthened out, but I think eventually I can make or have made something like that that will work better. The over the shoulder sleeves would drive me crazy. I know I'm sounding like a nut, but I just have very sensitive skin and swell around the top too. It isn't because it's too tight. I'm not a huge person & yet the only socks I can wear are diabetic and then only for 2 or 3 hrs. because my feet swell so much around the top that it cuts my circulation off. I solved that problem for at home by crocheting socks with thin yarn that are normal to the cuff and then they are so loose they don't even touch my skin. I've been like this since I was in my 20s and 120 lbs. Go figure? I don't have diabetes either.

Wow! I have not visited this site in forever! Glad I did today. I find out LD sleeves have improved greatly! Thanks to all of you for posting your personal info that helps keep the rest of us up to date!

OK, my inner elw is swollen and sore. I can't think of anything I've done to irritate my arm. The swelling comes and goes. Sometimes nearly normal, sometimes it looks dislocated, but it hurts to some degree all the time. Could this be LE?

Mini wasn't actually asking for a diagnosis--she just wondered if this is the way LE behaves. And the answer to that is yes. Early stage LE comes and goes (and maddeningly, it often doesn't show up when you're at the onc wanting him/her to see it!) The constant ache, too, is typical of LE, even before any swelling is obvious. That's because there can be excess fluid in the tissues long before it's visible. Also, elbows are frequent areas for LE to appear. So, all good reasons to check in with your doctor and see about a referral to a well-trained LE therapist for an evaluation. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Let us know what you discover. Gentle hugs,
Binney

Thank you Binney. You had it exactly right. I definately wasn't looking for a dx. It's just that in the past when I've had my LE act up it was in my upper arm/bicep and I didn't have this type of pain. It was more of the heaviness and hot feeling that Schatzi mentioned. That's why I wasn't sure. I've never had this kind of pain and swelling. I thought if it could be a LE thing, I'd give my OT here in town a call rather than my MD who is 35 miles away. Thanks for the input. I appreciate it.

No worries lago. :-) That's one of the problems with the written word. You have no nuance, no facial expessions, etc., to go by.

I'm a type two diabetic and was diagnosed with lymphedema after axillary dissection, lumpectomy chemo and radiation. My bladder froze and lymphedema started. No treatment was offered for lymphedema or after cancer care. Told it will go away and some.of it could be age related. went back to work. Swelling pain minimal,and I had very little feeling in arm. Then I was diagnosed with Graves Disease. Took methimazole and had horrible.problems with regulating blood sugar. Took a toll on my ability to work as all of a sudden blood sugar would fall and I was unable to function. Had to quit working and applied for disability. Lost medical insurance , only had public health for medical treatment. Meanwhile, arm and hand were getting bigger, I had a mass of hard muscle in arm pit, very limited use of right hand, carpal tunnel in both hands, starting to hunch over from pain, couldn't stand to be touched anywhere, severely depressed and balance issues. Rotator in right shoulder burned horribly and felt like the needles,started at fingertips and toes and moved up into my shoulder and neck/shins. 3 years later received disability from a judge couldn't see the difference in my arms and told me Obamacare would solve my problems.
I started disability and medicare.
Living in a rural area, doctors pretty much didn't know what to do with me. Found one who sent me for 3 months of physical theraphy. The lymphedema trained therapist left within a week of starting my treatment. New therapist had no training. Taught me pain,management....breathing techniques and self massage. I can't out enough pressure on my hands because of pain to self massage. Got the bill for $5000...stopped treatments. Only get $1000/no from disability. Moved to denver and went to a
medicare doctor who didn't bother to read my medical history, heard diabetes and said ” there is no treatment for lymphedema although the arm is swollen...you've obviously adapted to it”. Needless to say, I knew she was not going to treat anything but,the,diabetes. She did my,disability evaluation and since she didn't treat me for graves, lymphedema,it fibromyalgia, she said I was fine. Lost disability and medicare....had to withdraw from 6 prescriptiob drugs ”cold turkey”. now I sit unable to do much. Tried working..in 6 months, my arm is enormous and I cannot make a fist with,either hand, when I bend,my fingers if feels like they're dislocating. My diabetes us untreated,.I' losing hope...I think the graves us kicking back in, having muscle,weakness, loss of balance, severe migraines...I hurt so bad some days I wish I'd never left them operate in me. Reapplied for disability, but don't have much hope. No one will look at the while picture and,see that this cure has ruined my life. I lost two homes and have little else left. Anyone know who can help me? My husband makes $30k/yr and it's too much for social services, but barely enough for both to live on. I can't afford insurance. Indigent care won't treat lymphedema.....i don't know where to turn.

Edited by Mods to remove member's personal email address, for her own privacy and security.

Has anyone had fat grafting done, and if so, did it affect your lymphedema? You can PM me if you prefer. I am considering having it done and wonder about if it will affect my (mild) LE.

Yes, fat transfer. Thanks!

Well seems that I am being questioned about my motives here. I am a breast cancer patient and I do not work for PRMA. I just happen to love my PS. I had a very bad experience with my first BS. Although I did not have DIEP flap because I was not a good candidate not because I did not want to and I have been lucky not to have lymphodema but I do not let my guard down because I am aware it can happen years down the road. I think the work my PS group is doing is amazing and I am passionate about spreading the news of new work being done out in the breast cancer world. I have always thought knowledge is power and if it can help someone else then it is worth it. Sorry if I offended anyone with the multiple post that I had.

Binney, after looking back at their news website you are correct in their not being a study listed there for the lymph node transfer. There is a news media publication of the procedure and how it is benefiting patients currently but you are correct in there not being any long term studies on this procedure. I still find it very hopeful if I should every experience lymphodema and worth disscussing with my doctors. The studies for the other two procdures are list on their website at the bottom of the page.

Buddy, hello,

I have not had recon, but definitely have dealt with truncal lymphedema, which can affect back, side, axilla and chest--even with reconstructed breasts. It is an underlying problem with lymph flow that originated from the dissection or radiation of lymph vessels that drain the arm and upper truck on the affected side. It's often quite painful when it's in the breast or chest, though therapy and knowledgeable self-care helps to control the pain. The pain of truncal lymphedema can seem to move around and be hard to pinpoint, and it isn't very responsive to pain meds. Therapy to reduce the swelling and education in how to keep it reduced is the best way to get past this and on with your life. More about truncal lymphedema here:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Therapy also helps to control infection risk. If this pain and swelling is new or sudden, do please get help quickly, because cellulitis (infection) can spread rapidly and require a hospital stay if it's not stopped quickly. More on lymphedema-related infections here:

http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

Sorry you've had to join us here, but glad you found us. Please tell us how we can help. Gentle hugs,

Binney