• tweety's Avatar

    tweety asked a questionBreast Cancer

    Dose anyone have lymphedema if so please help what do i do

    9 answers
    • Topazcat's Avatar
      Topazcat

      I had double mastectomy for IBC 2 years ago. Lyphedema in left arm started 3 months ago. Saw a therapist who had me use compression bandages and then bought a sleeve. I also got blisters until I looked up sleeves and found that most companies make sensitive skin sleeves. Now I am able to wear it! Talk with your therapist or doctor, or go online to find a sensitive skin garment.

      about 6 years ago
    • Kizzy's Avatar
      Kizzy

      I had all of my lymph nodes removed six weeks ago and because I am high risk for lymphedema was referred to the to the lymphedema clinic to which I was measured and asked all the right questions and as soon as I said that I had some pain in my arm and my left arm where I had the operation was slightly bigger than my right and was told that I had Lymphedema and a support sleeve was ordered which I have to wear all day but not at night and was shown massage techniques which I do every day with exercise for my arm and shoulder
      But It is early days as my operation was a 4 hour operation for cancer and my arm was very painful and swollen from the beginning.
      I Every time I take my support sleeve off my arm aches badly for the next 2 hours
      I have been measuring my arm every day and both arms measure the same so Im not sure if I really have lymphedema or just post op swelling and is the sleeve doing more harm than good
      Anyone else had this problem

      over 2 years ago
    • LymphSolutions' Avatar
      LymphSolutions

      I've had lymphadema for 15 years in my left arm, after a lympectomy, lymph node removal, chemo and radiation. First of all, I highly respect the medical community and am thankful to them for helping me beat cancer. BUT... but they dont know what the XXX they're talking about when it comes to Lymphadema. The light, feathery massages they recommend, & we must pay a PT for, do nothing for the arm (at least for my situation). Despite trying their techniques for years, my arm was progressively getting worse. So, now I am in stage II or III, where the edema fluid is accumulating and building up like putty. If I leave it alone, it will one day harden, and be stage IV, permanent, and highy dangerous as risk of cellulitis and sepsis, which is deadly, can occur. So, I have come up with my own system and I will be writing a book about it soon. You here are my cancer-peeps so I will share.

      I. FIRM , not FEATHERY, massage. Sometimes the buildup is around my elbow, and it starts to ache. The PT's all recommend A feathery light massage...well, that 'aint fixin it!". The only way to remove build up of edema of the arm is with a VERY FIRM, methodical massage (which I do myself)...think of pushing/wiggling putty thru a balloon, or slightly hardened toothpaste thru a tube, not this light-feathery BS that the PTs recommend. . my system works!. Remember, firm but gentle. We are not 'damaging the tissue' by banging it with a hammer, we are gently but firmly telling it where to go. (lol). Once I get it massaged out of my elbow area, and into the general area of my upper arm, then I can almost feel it start to dissapate into my upper arm.. I usually do this at night watching TV, then the important next step, to further encourage the adema to drain out of my arm around the scar and into my body, is the my special night time sleeve, which I write about below.

      II. COMFORT PLUS REID SLEEVE: I wear a basic compression sleeve most days, but the most effective is a night time sleeve called the 'Penninsula Medical Comfort Plus Upper Extremity" Reid sleeve.I can promise you I am not affiliated with this company but you can find it at Lymphadema Products.com. Its around $75 and Insurance generally will NOT pay for it (unless you met your deductible, blah blah.. Its worth it to pay for. My original one lasted ten years and i just ordered a new one for the next ten years. .it is easy to put on, has a comfortable foam padding, and definitely reduces swelling while you sleep! It is larger and puffy and not too attractive but since you only wear it at night, no one sees it. I have lots of pillows and try to elevate my arm all night long with the Reid Sleeve on. I'm a side sleeper so the main thing is not to sleep on top of the arm and try to arrange the pillows so the arm is comfortably above my head or above my heart at all times.

      III. Also, this might sound unconventional, but our lymphatic system 'flushes itself' any time we 1) sneeze, 2) cough loudly or aggresively, or 3) urinate or bowel movement. So, I have noticed that often after one of these 'events', I'll feel a twinge of pain at my armpit surgical site, as if the adema is trying to move out, but it caught there. So I discovered it is wise and quite helpful,if, immediately after one of these events to just take a few seconds and do a quick self massage on the affected arm (ie , a firm but smooth massage from your wrist up to your armpit, and down a little towards our rib cage, just .about 3-6 times....even if its outside your clothing is acceptable...by doing so, you are helping your lymphatic system in the compromised arm, to find another lymphatic passage around the scar tissue, and once past there, your body can do what it would be doing naturally when your body is 'flushing itself' of these toxins. So remember, Sneeze, cough, or flush the toilet...then a quick 3-6 stroke massage. Cant hurt and definately helps!
      IV. One more, Bromelain!! I had an unrelated surgical procedure recently and the Doctor recommended I eat fresh pineapple before and after to reduce swelling...due to the natural extract called "Bromelain". So I had a 'aha' moment and started researching Bromelain...since it is a proven anti inflamatory, studies prove it helps break down 'PROTEIN' (adema IS protein, as you know). I like pinapple but just not a habitual eater of it. So I am telling you, after eating pineapple for two days, not only is my unrelated surgical area less swollen, but my lymphadema arm is definitely less swollen!! HOW COME NOT ONE LYMPHADEMA SPECIALIST HAS TOLD ME ABOUT BROMELAIN? They sell Bromolain extract at health food stores SO you betch your bottom dollar I"m a going to get some....since I dont always have pinappple in my fridge.

      These are my tried & true solutions and I hope they may work for some of you. Best of luck and hang in there! God bless & Namaste.

      4 months ago