Lymphedema?

MarcieB

I am curious about lymphedema? Here are things I would like to know:

1 - If you have it, what were your early symptoms?
2 - Can it be prevented? Are there exercises that can help?
3 - Does a compression sleeve help? If so, where do you get one?

I have had lymph nodes removed and am therefore curious about this possible side effect? Of course I can and WILL ask my doctor (I have a routine check-up in two weeks), I am just wondering what people's actual experiences have been.

jvbaseballmom2

I had about 13 lymph nodes removed; however, my surgeon told me after my surgery that I shouldn’t have to worry about lymphedema. I would ask your surgeon. I am very careful not to have any blood drawn from that arm, never take blood pressure on that arm, never have vaccines on that arm, and when I’ve needed surgery, I always alert them and they put an alert notice so all surgical staff know not to use that arm for anything. I also don’t lift anything overly heavy with that arm. It’s been 15 years for me, and knock on wood, I’ve never had any issues with lymphedema. Best of luck to you with your recovery.

cllinda

The sleeves do help. Ask your doctor if there is a place to order them from. I was lucky that there was a place nearby to get measured correctly.
TLC from the American Cancer Society carries them, too.
You should wear it when you fly.

cllinda

Look on the blog. There are a lot of questions that have been asked. It might give you an understanding of this symptom.

beachbum5817

I had 15 lymph nodes, if I remember correctly, removed. My surgeon sent me to physical therapy to help get the range of motion back in my left arm. The physical therapist noticed that I had lymphedema. I knew about it, but it didn't enter my mind. I couldn't get my watch fastened, but I just thought that was from having gained weight during chemo. So, she worked on it. She used massage and stretching techniques. At the end, she wrapped it tightly from my fingertips as far up as she could go. I kept that on until I saw her again. I went 3 times per week for about 3 months. When I was done treatments, she measured me for a sleeve and gauntlet. I believe that I ordered them from somewhere online. Besides my watch not fastening, I also noticed, after being diagnosed, that my arm felt very heavy. I was very fortunate that my PT noticed it, and I have never had it come back. I follow all of the things that jvbaseballmom2 does to protect my arm. I know people that have never had it and people who have never had it totally go away.

omaalyce

I had 9 nodes removed when I had my lumpectomy. I had DCIS in my left breast and IDC in my right axilla. The tumor in the right axilla was quite large and that is where the nodes were taken from. I had 4 out of 9 that tested positive even after chemo. I had chemo, surgery & radiation in that order. The first sign of lymphedema that I had was cording in my armpit. I had physical therapy as well and the same treatments as beachburn5817 and jvbaseballmom2. I have compression sleeves and an amazing masseuse who is trained in lymphedema drainage massage.

I try to do all the things to prevent flare ups but the simplest things can cause issues, a prick from a safety pin, a hangnail, a bug bite, carrying your purse on the wrong shoulder, using that arm to carry packages. The list goes on and on.

Currently I have a flare up that has been going on for two months. I had an ultrasound to make sure I did not have a blood clot as my arm is very hard to touch. I have had 4 bouts of cellulitis since my lymphedema was diagnosed so my doctors carefully monitor my symptoms.

I saw my masseuse yesterday and she worked on my arm for an hour so the swelling would go down and the lymph fluid would start moving. I have my sleeve on and see her next week.

BreastCancer.org has excellent information about lymphedema and youtube has videos of exercises to help with the swelling.

I found rubber bracelets on amazon that say No needles or BP in this arm. I wear one every time I leave the house. Hope that helps. As beachburn5817 said, some people never get it and I've met others who have had it for over 10 years. Wishing you all the best.

TerriL

I had several lymph nodes removed. So far no lymphedema I use the same precautions as baseball mom. When I've gone in for colonoscopies, etc. I always have them band the arm so they don't use it.

raven

I have lymphedema and have had tremendous success in controlling it with Frequency Specific Microcurrent. I strongly recommend it. Google will lead you to more information and to some one that practices it in your area.

MarcieB

Thank you all for your responses! Truthfully, I have no idea if I have it or not. No one has mentioned pain, so far? I don't think I have swelling, except sometimes I have difficulty removing my wedding rings, but that was true even before I had treatment (depending on what I ate)

Here is the situation - I was FINE. Then I elected to have a slight breast reduction of my right breast so I could *even out.* I had no idea how extensive that surgery would be! I had to sleep on my back for over two weeks (VERY hard for me), and then I could gradually manage to sleep on my left - which is the site of my lumpectomy and node removal. I don't usually sleep on that side, but I had such difficulty sleeping on my back. I also carried everything with my left hand. At that time I also swapped out my desk and painting table chairs because I was spending a lot of time painting Christmas ornaments for charity, and my computer chair offered more support. I haven't swapped back yet, I'm just planning to get a new desk chair!

After the holidays I became aware of a tingly feeling in my upper arm, like electricity, and sometimes my shoulder hurt. I thought I had just overdone it with painting (I brace my left elbow into my side to steady the glass bulb) I have done that before. Now I feel like it is all coming from the left area of my neck? Sometimes my outer two fingers go a little numb. I have absolutely no lumps - believe me, I check. I can do complete range of motion with my arm, but my neck feels stiff from time to time. That is the weird thing - it is not constant. Sometimes I think it is gone completely, but then I begin to feel it again.

Of course I am going to consult my doctor. I just happened to notice someone mentioned lymphedema in response to another question and since I know I had node removed I just thought I would ask. Thank you so much for all the information. And I am happy to have discovered Breast Cancer.org.

Bug

I had two or three lymph nodes removed. I have not had pain or tingling but I do occasionally get a "full" feeling in that area. It was a friend, not a medical person, who recommended a sleeve and gauntlet when I fly so I asked the oncologist about that. The oncologist referred me to a physical therapist who specialized in lymphedema. The PT did massage and exercises and showed me how to do both. The PT office is also where I got the sleeve and gauntlet. I wear them when I fly. I also do not have blood draws from, blood pressure taken from, or vaccines given in that arm.

TerriL, you said that when you have a colonoscopy you have them band your arm so they don't use it. What does that mean? Are they putting a wristband on? When I go for a colonoscopy I tell person after person not to use that arm. One time one of the nurses made a note in large letters and taped it to my bed.

jvbaseballmom2

Bug, When I’ve had procedures, nurses have put a big note at the top of the bed stating no sticks in right arm, Some medical facilities have a neon gauze sleeve which covered my entire arm and stated no sticks and I’ve worn that sleeve on my right arm. But I tell each person I see that as well as I’m being prepped.

legaljen1969

@MarcieB, I hope you find out what's going on. I will be thinking of you.

Bug

jvbaseballmom2, thank you for the info. I'll ask about the sleeve should I be in that situation in the future.

Ashera

Hi MarcieB!
5 yrs ago -- I had 21 lymph nodes removed along with a lumpectomy. I had been sent to an OT prior to surgery and she told me what to expect and what to look for post surgery. She mentioned 'chords'. Having no idea what that meant I forgot about it. As I was healing after surgery, probably 3 weeks out - I felt these odd hard string-like things - like uncooked spaghetti below my elbow inside my lower arm and in the softer inside upper arm - and a larger harder area under the harm. I went in immediately and saw her 3 times a week at first and then 2x afterwards - for nearly 7 months. Her gentle massage would first start below my breast around my rib cage, then over and around my breast, then back down to my lower arm moving upwards and around to the front again. She was 'loosening up' the lymph system below my breast to be able to accept the fluid she was going to be pushing up around and down. This miraculously softened these cords. For the first couple of years - when there seemed to be a flare up - There was a particular spot on my side right before the breast that would swell and that breast would feel heavy. My upper arm would feel heavy as well. I'd been prescribed compression sleeves at a certain strength and had several I would wear daily. Only sometimes I would wear a glove/gauntlet as my hands/fingers never swelled. Before my OT days ran out - I was extremely lucky they played games with my insurance company to get covered for a Bio-Compression machine with a huge vest/arm type with 8 chambers that inflated to a set pressure from the hand up through the breast. Each session would last around an hour and it would lessen the swelling. Now - at 4-5 yrs...I stopped using the pump except every once in a while. I've not worn the sleeves in a while but would the first to know when I needed use either again.

I don't exercise that arm though it wouldn't hurt. If I massage lotion, as I do daily - I unconsciously go from wrist upwards with slight pressure. I say NO to any injection, BP and even will not allow the hospital to put a plastic ID arm band on that arm. Wear no rings or bracelets. Unfortunate - cause I always had the best veins in that arm and blood sticks are so hard on everybody on the L arm! I also try, but forget sometimes, not to carry anything heavier than a milk bottle in that arm.

So from what I've learned - all these syptoms and others can appear, or reappear, at any time - even years later. An Occupational Therapist is who worked with me - but a good massage therapist that specialized in lymph-drainage could work too. Just know it's an extremly light movement of hands over the affected areas, not heavy pressure. I was fortunate my arm did not swell so badly as to need constant wrapping. But do what you can to head it off at first signs. Very hard to go backwards after it takes hold. Warmest wises!

MarcieB

@Ashera - thank you so much, everything you have told me is very helpful! I honestly do not think I I have it - no cording, no swelling. What I am experiencing feels like a pinched nerve in my neck and mostly affects my shoulder. It reminds me of electric current and sometimes extends down my arm (like a flicker). And it is not consistent, it comes and goes. I even think it has lightened up quite a bit these past few days. Like I said, it did not begin until I had slept on my back for a few weeks, then on my left side, which is where the nodes were removed. Do you sleep on your affected side at all?

Zsuzsa

I had 3 nodes removed in 2 surgeries, both right breast. My right (dominant) is slightly swollen, and my middle finger is noticeably. LymphedemaProducts.com is an excellent resource for info and compression garments. Dr Melissa Gallagher has an online blog that details how to self-massage.
Melissa@NaturalHealthResources.com. I wear my sleeve & glove whenever I fly. Good luck to you!

Terri

I have had 12 lymph nodes taken out of my chest. I feel swollen there. I don't know the ramifications of the removal, as they just did it during a surgery to remove melanoma.

Ashera

Marcie - Yours sounds much like a pinched nerve. Those first couple of years - I tried to arrange my body where I was not putting any pressure on my right arm. I'm a side sleeper. And after I'm out...I'm all over the bed. Very few times have I woken up with my hand or arm feeling numb for sleeping on them. Anything at all that will constrict your affected arm is a no-no. I've felt what you are describing in my neck frequently - mostly over the past year when I'm 'tight' or stressed or have held my head at the wrong angle for endless laptopping or reading. Sometimes where I can't turn my head for a day or two. For me, it's stress. Never remember lymphedema causing electric zaps down my arm. That just sounds nerve related.