polly 1971

Went to the doctor and definitely do have lymphedema.  Will start wearing compression sleeve and gauntlet this afternoon.  Thanks, all, for advising me to go to the doctor AT ONCE.  
Have any of you had lymphedema? I realize that each person is different, but how long did it take you lose the edema?
If you were unfortunate enough NOT to lose the swelling, did you have any other complications?
I have mine in my rt. arm.  If any of you had it in your arm, did you have pain in the armpit and any other place?
Thanks again for the info!!

[Cleveland Clinic]

Dear Polly1971:  I do not see a specific question for the medical professionals so will just keep your post up for others to respond.  You may have meant to enter the breast cancer community rather than the forum.  People chat in both so you will hopefully get the responses you need.  

[lhughes]

I've got lymphedema along with my mom.  My pain is mostly towards what I refer to as the wing area behind my breast before you get to the full back area and underneath the arm around the armpit area on the arm itself.  I don't think my armpit has much sensation yet.

I wore my sleeve for about a year and it has stabilized somewhat.  Mom quit wearing hers because it woke her up at night and just lives with the swelling.  Neither of our arms has gone up or down in swelling in the last bit.  Mostly what edema we do have we've had since our surgeries (mom's was back in 98 or 99, mine was 06).

I wear my sleeve especially when I know I am going to do heavy lifting or extreme working, pulling, tugging with my arm.

Did you learn how to do compression bandages and manual lymphatic massage?

[Polly1971]

Thanks for your response.  Neither manual lymphatic massage nor compression bandages were mentioned to me the other day by the new surgeon that my PCP sent me to.  What are they, exactly, and is it usually done  when you first start treatment and wearing a compression sleeve?

[Polly1971]

Please review my question to "lhughes".  Would you please answer that question?  Is a surgeon the correct physician to be treating me for this or should I be seen by some sort of specialist in the Boston, MA area where I live?  Thank you for your continued response to these questions.  I am "somewhat" anxious (HA!) and just starting my education on lymphedema.

[carme]

I don't think the Clinic will answer after they've done it once.  You will have to make a new post.
If it were me, I would educate myself on Lymphedema thoroughly.
My mother had it in one arm. My sister and I were taught how to massage it to help it drain. 3-5 minutes of massage (believe it or not it's a featherlite touch) and she would have to go pee.
Your earlier post says you will start wearing a sleeve and later post says it was not mentioned by surgeon. You need to insist on a specialist.  At least Kaiser did send my mom to one.

[lhughes]

Ask your surgeon to send you to Physical Therapy for your lymphadema.  My insurance paid for 2 weeks of therapy (minus 25 dollars a day).  She massaged my arm, wrapped it in bandages to wear the entire 2 weeks, and taught me and my husband manual lymph drainage.  There is a book that is really good called Living Well with Lymphedema (I believe).  There are many books out there that will tell you not to do anything with the damaged arm.  However, I have learned that if you follow that advice to the letter, you will be afraid forever even to get that arm exposed to the sun or a cat or anything that might scratch the skin, much less your own cuticles.  Just take care of the arm, watch for infection, protect it when necessary, but do go about your life.  You cannot be afraid of things that MIGHT happen, just be watchful of adverse affects and get them attended to immediately.

Please go back and ask for physical therapy.  It will help so much.  When I did the wrap for 2 weeks, my arm did decrease by a considerable amount, and stayed that way until I got lazy about wearing the sleeve.  It's important to wear your sleeve, especially when you know you are having some difficultides.  You'll be able to gauge later when you can and cannot go without the sleeve, you'll learn the difference in the feeling of the arm.

Good luck to you, I hope you do as well as me in this.  And try not to worry too much.  If doc A doesn't get you therapy, ask your radiation doc.  That is who sent me for physical therapy.  One of your docs will know or realize that you are serious and understand the importance.  It does help, really.

:)

[lhughes]

PS... insurance should pay for at least 2 sleeves a year.  Mine will pay for 6, I think.  And you do need to get remeasured occassionally for changes in the arm.  A sleeve is supposed to last anywhere from 4 to 6 months before it loses it's effectiveness.  Keep up the maintenance on those so that your arm gets all the benefits.