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Fly with compression sleeve - Lymphedema

pitt's picture
pitt
Posts: 388
Joined: Aug 2009

If you had a lymph node biopsy, you need a compression sleeve every time you fly, go to an elevated location (mountains), exercise, or life anything more than 5 pounds. Please understand this is serious. My girlfriend just informed me that she flew without her sleeve and the next day her arm was in immense pain, swollen, etc. She is having serious issues now because of this. Please please please be careful. Pitt

Katz77
Posts: 598
Joined: Sep 2009

I, like you, wear my sleeve when hiking or working. Work in surgery. It def makes a difference. I live at 6000ele., so I think I'm a little quicker to swell. I would have not even thought of flying and needing one. Thanks for the info. Good luck to ur girlfriend. Katz

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

I had to see a physical therapist after surgery and they told me about flying and compression sleeves. I've never had to wear one as I don't like to fly. But I was told not to lift over 25 pounds. 5 doesn't sound like much. I've been avoiding heavy stuff anyway.

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

On my 5500 mile flights back and forth from the Netherlands, I make VERY sure to get up, walk around, stretch my arms, etc....all the stuff that they say to do on the tape run in the airplane...

I have been good about my 'special' arm...but not so that I can't use it in a pinch. I am taking golf lessons again to learn how to protect it, for example...and light weights exercise is good...

I asked my doctor before I did anything....

Hugs, Kathi

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

We also need to remember to NEVER get a shot in that arm or get your blood pressure taken in the arm! So many don't know that.

Lex♥

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

I also always ask for a pediatric needle (called a 'butterfly') when they are taking blood from my other arm....It's all I have left, and the veins have taken a beating...

Hugs, Kathi

Sunrae's picture
Sunrae
Posts: 808
Joined: Oct 2009

I'm adding this discussion to my favorites. My mother went thru this after she had surgery and it was real difficult to see how her arm swelled. Thanks for bringing this up.

penchick
Posts: 1
Joined: Dec 2009

The unsettling thing is that you can go for some time with no problems, and then lymphedema suddenly rears its ugly head. I had a problem with it from the beginning but I have a friend who was a long time survivor and didn't have a problem until one day on a flight. She had flown previously with no problems. I always use a sleeve when I fly and when I exercise, particularly any weight lifting.
The new recommendation that was published in August after an extensive study is that carefully controlled weight lifting helps lymphedema - a reversal of the advice I was given seven years ago after my surgery. All I know is I'm having many more good days with my arm than I did before, and I KNOW it's because of the weight lifting.

natly15's picture
natly15
Posts: 1930
Joined: Sep 2009

Where do we get a compression sleeve? I plan to fly in February.

New Flower
Posts: 3993
Joined: Aug 2009

Natly,
Compression sleeve can be bought in medical supplies store or from certified distributors. There are several companies which make them: Juzo (www.juzousa.com), Jobs, Madi. The most important is having a correct size, You can be measured in the store, or but better by lymphedema therapist.
If you want to be covered by insurance you need to call them and ask to recommend store which is in-network and taking your insurance. You also need to see lymphedema therapist to measure your arm to determine your size.
Ask you surgical /breast oncologist to recommend a specialist. In order to be reimburse by insurance You need a prescription.
I was given prescription twice initially by my Surgical oncologist and second time by my Radiologist.
This link could very useful http://www.lymphnet.org/.
Write me PM if you have more questions.
New Flower

jbug
Posts: 285
Joined: Nov 2009

What if they only took a couple of nodes? Do you still need a sleave?

marywest's picture
marywest
Posts: 135
Joined: Sep 2009

I just got two compressions sleeves, am going on a 15 hr flight. I was able to get mine from a medical store and also pharmacies can order one.

Cat64's picture
Cat64
Posts: 1192
Joined: Aug 2009

I'm wondering the same thing. I only had 2 taken out and wonder if this is something I need to worry about and is it still possible to get Lymphedema?
Cat

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I never have used one, but maybe I will now, . My first mastectomy was 15 years a go now this current one. I have no choice but to use arm for sticks etc... geneerally they use my older one. You can use the leg for blood pressures too. i ask them to use the manual one so it does not pump up as hard or long. It is a challenge when you have two bum arms. Do you gals wear a medical alert bracelet?

pitt's picture
pitt
Posts: 388
Joined: Aug 2009

Yes - I have a medical alert bracelet and I wear it all the time. It states: Lymphedema alert: No BP cuff or needles in left arm.

natly15's picture
natly15
Posts: 1930
Joined: Sep 2009

Also have medical alert bracelet but had to remove it, got an allergic reaction to it. I guess I need it in a precious metal. Purchased it from lymphedema organization.

Dot53
Posts: 236
Joined: Nov 2009

I had a bilateral mastectomy with reconstuction on Dec 5. I told the docs I had a family trip to florida planned for Jan 20 and will be flying. I asked if it would be a problem and if I should be worried about lymphadema and they said no... they didn't even mention the sleeves... the only thing they did say was to expect to hear popping sounds from the expanders... after reading these posts I am really afraid to fly...

Sher43009's picture
Sher43009
Posts: 601
Joined: Nov 2009

I asked my onco rad nurse about lymphedema and she said it doesn't matter if you have only 1 or all your lymph nodes removed you can get lymphedema. She said "you have to be careful with your arm for the rest of your life. It can happen at any time. Use your arm but don't abuse it. If you have 5 boxes to move--move 2 at a time not all 5." I plan on using a sleeve whenever I fly...better safe than sorry.

Mama G
Posts: 764
Joined: Nov 2009

I just flew to California and back and didn't even know about this... Told my Onc and she never mentioned anything. I'll have to ask on Tues when I go in for my Taxol.

sherria49's picture
sherria49
Posts: 126
Joined: Sep 2009

Hi Pitt!

I had lymph node biopsy, and on sentinel node removed. So...flying, exercising, lifting, blood drawals, blood pressure checks... should these things be avoided on that arm forever or is there ever a time when this isn't as issue??

Wow! I thought I was through most of the issues! I guess just another chapter in BC life story!

Big hugzzzz

Whoknowz
Posts: 82
Joined: Nov 2009

My surgeon told me about the no blood pressure, no blood draws in the arm where she was doing the sentinel node biopsy when we talked just before the surgery. The nurses hammered the message in. They said some doctors would ask how long it had been and would say it was ok after a certain period, but not to let them use the arm.

They didn't mention flying, but a book they gave me before I left the hospital did. I ended up having 4 nodes removed and that seems very small potatoes compared to many on here but better safe than sorry.

survivorbc09
Posts: 4378
Joined: Jun 2009

You have to be extra careful with that arm even if you don't have lymphedema. You shouldn't have your blood pressure taken in it, no shots, no blood draws, no needles at all in that arm. Something else too, a lot of women said they got bracelets stating lymphedema. Most hospitals anymore will not allow you to wear them in the operating room. They have their own color coded plastic bracelets they use. Just be sure and tell them.

New Flower
Posts: 3993
Joined: Aug 2009

to be protective of our arm(s).
Even medical professionals do not know about lymphedema or how to avoid risks and prevention.
Unfortunately they have not been trained to deal with lymphatic system.
Pleas be your own advocate and do what is right for your arm

Dot53
Posts: 236
Joined: Nov 2009

when you have a double mastectomy do they take nodes out of both arms? If so, does that mean no blood draws or blood pressure taking from either arm?

If so, how would they do it then??
Dot

pitt's picture
pitt
Posts: 388
Joined: Aug 2009

I had a friend tell me that she uses the arm where they took the least amount of nodes and she requests they use a pediatric needle. Some offices have blood pressure cuffs for the legs particularly for this situation. Good luck! Pitt

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

If they can't use either arm, they use your thigh for blood pressure.

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

The lymph system is actually another circulatory system in the human body. The veinous and the arterial are well known, and pretty dynamic, since they interact with the heart. Their eb and flow are controlled by, to varying degrees, the pumping action of the heart.

But the lymph system is a bit different. It takes care of providing the cushioning fluid between the cells, and the nodes have the behavior of a traffic round...more of a directional system, than a suction/pressure system like the other two. For instance, when you scrape yourself without drawing blood, and a fluid appears, that's lymph at work! The lymph system eventually empties into the veins.

Once this sytem is compromised, like the sentinel node removal most of we lumpectomy/mastectomy patients have likely had (ask your surgeon), the 'traffic round' is removed, and so it is even harder for the fluid to get to and from the area around the cells. These removed sentinel nodes are special in that they are the first nodes connected to the breast, so it is a great indicator of cancer spread and determines treatment options. The next set of nodes removed receive more fluid from the upper arm than the sentinels, and so, if removed, are a bit more likely to cause blockage and swelling of the arm. There are other pathways in the arm that do not use this, and will, to some extent, shoulder the burden left by removal of nodes.

The idea of the 'special arm' is because it is hard to determine whose lymph system will continue to work, and whose won't, as a result of the surgery and the radiation to the area. As others have said, you need to be cautious with the arm...limit blood draws, do not have blood pressure cuff useage, etc...just to cut down on the chance of this trouble appearing. Just like people wearing seat belts in their car. BUT, that said, ask your doctor for exercises, etc that ARE ok...or ask for a referral to a special therapist to keep the arm as good as it can get.

Hugs, Kathi

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