help with lymphedema

pwaldo

Hi, 

My daughter had a dbl. mastectomy in November.  She is having a lot of problems with lymphedema.  Her hands swell terribly and she has cording-multiple under her arms.  She sees a specialist PT, wears compression gloves and sleeves and just recently started using a Flixicare System.  The System provides temproary relief.  Does anyone have any other suggestions?  Thank you! 

kcshreve

Has she learned how to do her own Manual Lymphatic Drainage - a light massage?  Deep breathing helps move fluid, as does raising and pumping the arm/hand.  I recently learned about doing lower abdominal massage, which stimulates even more fluid moving.  There is also kinesiotaping, which the PT can show her. I would think her PT should have more ideas for her.   Also, I have found that it helps to get a second opinion.  That new person will have a slightly different twist on the MLD or will add a new technique that can be helpful.

Suzybelle

What a good mother you are to check on this for your daughter.  My mother was invaluable to me the first year I was recovering from surgery - I also had a bmx.

For me, the first 8 to 12 months after surgery were the worst as far as lymphedema.  Several things really helped me besides learning how to do MLD as KC has pointed out...and just in general learning how to self-treat.  Wrapping is another huge help.   Once your daughter learns how to treat her lymphedema, she will feel much better about life in general.

But, having said that, I would be much more unhappy without - neurontin for the pain that goes with LE.  I take it every night and it really helps me.  I also have a Solaris Tribute nightsleeve that makes a world of difference in my arm and is so much easier than nightly wrapping.

I had my surgery two years ago in Feb.  I know your heart is breaking for your daughter, but I promise there is life after all of this, even with it.  I have had to learn how to treat my lymphedema, but I am back to gardening, playing guitar, cooking and driving people nuts - just like I did before breast cancer.   I just have to go a bit slower and pay close attention to my body - which is no biggie.

Hang in there, and please feel free to private message me if you want to.

Suzanne

Binney4

Hello, pwaldo, and welcome to bc.org!

It's great that she's already gotten so much help. Has her therapist taught her to do self-Manual Lymph Drainage and to wrap her own hands and arms? If not, those are important tools for her to have so she can take charge of any problems, flares, or discomfort.

Specific exercises can be helpful -- many of us use the Healthy Steps exercise DVD here:
https://www.gohealthysteps.com/store/?productID=3

Lots of other information about lymphedema care here:
http://www.StepUp-SpeakOut.org

We're all here for both of you. Please tell us how we can help!
Binney

Kicks

pwaldo - When you say that the MLD machine gives temporary relief - do you realized that there is nothing that will take LE away permanently? It can be managed but once it raises it's head - it's there forever. (At least at this time - there is research ongoing.)



For some, just buying a sleeve and glove can be fairly simple but not for all. 'Off the shelf' garments do not fit/work for me at all. Garments come in different compression levels and different people need different levels - for me heavy compression only makes it much worse - light works the best. I can tell how the barimetric pressure is - I react to that. My custome sleeves have been figured out for almost 2 years but we are still working on getting gloves really right. Each set is better abd hopefully the ones that were just order will be. I have really strange hands - they are slightly webbed and it's worse between middle finger and ring finger so anything 'standard' HURTS. Have 2 new sets ordered with changes so hopefully they'll be the answer when they get here.



I also have a Solaris Night Sleeve with covers. Day garments and night garments work on different principals - active and passive.



I have a Flexi-Touch machine and use it daily (occasionally twice a day if needed). It's great. There were no company reps within more than 300 miles so my LE guy is now their rep in the area.



I am a very active person (I'm 65) and I will not allow LE to dictate what I do. The more I do, the better it is and the more I do the happier I am.



Something to remember- we are each so unique - no 2 of us are the same in any way.