lymphedema

[Rupali]

Hi all,
We made a big trip from US to India. It was a 20 hour travel and we chnaged flights in Paris. When we reached Delhi I heard some pain in my right hand which is the mastectomy arm. I had consulated my surgeon and physio therapist in US before we took the flight and they had all adviced that it should not be a problem and advised against putting a compression sleeve or a bandage.
They however gave us a bandage and said in case you feel something on the flight then tie the bandage on the arm.
I felt a little bit tingling in the arm while on the flight but I felt that was nothing severe so I did not put the banadage.
Now after we reached India I felt stiffness and tightness in my arm after 1 day. We went to the best Oncology center in New Delhi and showed the arm to an oncologist here as they have no lymphedema clinic. He adviced that we do manual massage and it will take 5-6 days to resolve the lymphedema.
This air travel has left me with lymphedema now and I feel my arm will never be the same as before.
Has anyone of you who has had mildlymphedemd after flight?
How have you solved it? Have u been able to return to normal life with the arm after it?
Please give me advices on what more I can do other than manual mild massage which I was told to do 3-4 times a day by having the arm at an elevated level and have a ibuprofen at night.
Please help me ladies.

[alicecallahan]

Rupali

I was counseled by a very good certified lymphatic massage nurse to ALWAYS wear a compression sleeve during air travel if you had ever experienced any kind of swelling in any body part during flights.... I have not had a problem with lymphedema, but I would recommend a specialist in the massage...they seem to do a good job, and you will prob. need also to get a custom made sleeve and others I know who have been treated for even mild cases tell me that they were told to wear the sleeve all of the time...which, they usually do not (oops) like at work, out, but do wear it at home and at night....sorry for your grief, but it can be managed.....

[John21]

My wife wears hers every time. She was advised the same.


John

[Lauriemn]

I have mild lymphedema and I would drink lots of fluids and eat a low sodium diet. There are exercises you can do, like raise your hand above your head and slowly make a fist, than open the hand back out. Do it about 10 times twice a day. You have to be careful about the massage because it is a very specific type of massage to do,so I would make sure that the person who showed you it knows what they are talking about. My le therapist told me that doing the wrong type of massage can actually make it worse.
Also, do not lift anything heavy with that arm and hot,humid weather can make it worse.
If you want more specifics about the massage and more exercises, pm me and I can go into more detail about them.

Laurie

[alicecallahan]

Rupali, I just found some information I have...there is a website www.lymphnet.org Its the National Lymphedema Network.....

[Sandy H]

I always wear a sleeve (off the shelf works for me) day and night. Do my manual massage every night and morning with the sleeve off. I put two sleeves on when I fly and do not take them off for a couple of hours after landing. I try to drink lots of water and no salt. Should not left anything over 5 pounds that is a gallon of milk, no repetative motion, pushing or pulling with that arm. Wear a I.D. bracelet on the arm so no one will take B/P, blood, or finger stick in the arm. If you get a cut of any kind or scratch be sure to clean it and use some kind of antibiotic ointment on it and watch for infection. No hot showers, hot tubs, or saunas. I call it my dead arm. All this info I have written will be covered by a specialist. It is manageable once it is under control. Wishing you well, hugs, Sandy

[tousled1]

I have mild lymphedema since my surgery and radiation really aggravated it. I now have a compression sleeve but I must admit I only wear it when my arm starts to feel "heavy" or when the sleeve of my blouse starts to get a little tight. I purchased an exercise CD specifically for lymphedema patients. I do that every other day and the arm feels great after it. Like everyone else said -- you must be very careful about massage. Make sure that you find a therapist who is certified in lymphatic massage. Best of luck to you.

[Karen t]

I wear a sleeve (Jobst brand available in stores or online) whenever I travel by air, go to higher altitudes (mountains), while exercising or doing repetitive types of housework or yardwork. I also wear a ring on the ring finger of the affected side so I can tell if my finger/arm is starting to swell.

Have been going to a certified massage therapist every month for the nearly five years since breast cancer started. It gets expensive and my HMO won't cover it and wouldn't pay for my sleeve, either. Sometimes it seems that it would be more cost-effective if the HMOs spent a little more on the prevention side of things.

Best wishes.