Lymphedema

[Hihif]

Anyone challenged with Lymphodema in their arm from prior surgeries? What’s your secret for going through this?

[Newtkim1]

Hi Hihif,

Yes, I am challenged with one arm having lymphedema. I had a double mastectomy in 2015 and many lymph nodes removed from my right armpit. That arm is always swollen. I bought a mini trampoline and “rebounding” on that helps. I also purchased a compression sleeve from Lymphdiva’s. (Check out Lymphdivas.com). I wear that when I know I will be using that arm a lot. My doctor did suggest physical therapy, but I have not done that. I seem to have so many appointments, that adding physical therapy to the list would just be too much!! Good luck to you, and let me know if you find anything that helps!

[Hihif in reply to Newtkim1]

I wear a glove and sleeve all the time. I have a compression vest and pad. I also use a Flexitouch machine everyday and do lymphedema exercises. Physical Theraphy helped me understand how to care for lyphodema and how to conduct manual drainage.

[Newtkim1 in reply to Hihif]

The Flexitouch System looks interesting. I may consider that if my symptoms worsen!

[Hihif in reply to Newtkim1]

It was incredible but, I received the Flexitouch for free on my insurance. I find that it relaxes me similat to a massage. My Physical Therapist work to get a prescription from my doctor and processed the order at MD Anderson. I received it 5 days latter.

[darlenejulien]

I had a mastectomy in 2014 (right side) with about 9 + nodes removed. I have done therapy (back then) but seriously it didn't help. My arm/back area is always swollen & the sleeve's just roll down, don't stay up! I just "live" with it!

[Hihif in reply to darlenejulien]

I’m so sorry you have lyphodema. It is really challenging to work with. I have information on what I do to survive in the post above. Hope you are able to manage it effectively.

[Garnet131]

I have lymphedema (LE) in my Left arm. Had L mastectomy and reconstruction in 1995 with many lymph nodes removed. LE first developed in 1998. I had LE therapy (wrapping, etc.) and then a custom-made daytime sleeve and nighttime "Tribute" sleeve were prescribed and I was told to wear for a year. After that arm was pretty good, and LE seemed to be in remission for 13 years, during which I exercised and was pretty active. In 2011 LE came back following a new exercise class where I did push-ups. Went for therapy again and found the protocol had changed. After wrapping and therapy, I had to learn MLD (manual lymph drainage) so I could do daily therapy at home. Was again prescribed custom sleeves and Tribute for night wear, but this time told I'd have to wear 24/7 forever, which I have done ever since. I wear my sleeves day and night, feel naked without them, but have become somewhat lackadaisical about doing my MLD therapy since my mbc diagnosis in October 2017--sometimes due to being too tired and other times, just feeling overwhelmed. And my arm shows it; it's bigger than it's ever been. I'm now trying to get back in gear with the daily therapy and even doing it twice a day when I can. I've talked to my PC doctor and oncologist about it, and either of them will give me a referral to an LE clinic, but I've put that off because I just can't face another round of appointments right now. And also because I've heard that it can be difficult to get Medicare coverage for LE.

[Garnet131]

Above was my LE background. This post will be about practical LE stuff. I highly recommend that anyone with LE check out the Lymphedema group under "Community" at breastcancer.org. Things may have improved now as far as the medical community recognizing lymphedema, but this group was my knowledge base on how to deal with LE. At first I had custom sleeves/gloves that cost $800 to $1000, and not always covered by insurance since I had a $4000 deductible. After a few years when my arm was more stable, I began ordering "off the shelf" from brightlifedirect.com. Their prices are considerably lower than local dealers, with good customer service and easy returns if needed. I use the Juzo Soft Dream sleeve because it comes in multiple colors and I can coordinate to my clothes. (Making the best of it since I have to wear every day.) The colors change twice a year (Spring and Fall), and I now have 10 or 12 to choose from. Hihif, I'm glad the rebounder/mini-tramp works for you. My sister uses one for exercise and gave me one, but can't use it because I get headaches from it. Not sure if that's related to the fact that I easily get carsick or because I've had a few concussions in my life.

I do have a weekly tai chi class that helps with the flow, along with other fitness classes that orthopedic oncologist said are OK again. I definitely feel better when I get more exercise. What are the LE exercises that you do?

[Hihif]

Do you have a gmail account that I can send them to?

[lynnhbtb]

You've gotten a lot of good info here on Lymphedema, but I'll add my 2 cents. I had 19 nodes removed from right side in 2012 and had a hard time getting anyone to diagnose my puffy back, torso and arm. Seemed like the oncologists didn't want to acknowledge it. Strange. Finally got a referral to PT. It was VERY helpful. I got a compression machine prescribed, learned manual drainage, got some sleeves and learned how to use KT tape for drainage. I've also found out what triggers the swelling. Cutting, chopping and gardening as well as riding my bike, using the handbrakes. Here are some links: youtube.com/watch?v=7mMSAM3...(Not working as expected?)

ptandme.com/treatment-techn...

If you do a search, you'll come up with lots more links and information. It's really helped my trunk swelling, which can be hard to treat.

Best of luck! It is manageable.