Has anyone gone to Physical therapy to deal with breast and arm swelling (lymphedema)?

New Flower

KayNYC said:

Thanks for the offer to share the info
I have been reading alot about Lymphedema online and the boards on csn. Which sleeve worked the best for you? My PT wanted a compression of 15-20 but when I called the Pharmacy where the fitter is employed, they told me that they only have them for 20-30. I contacted the PT who said ideally, the 15-20 would be best however the 20-30 would also work. Since the fitter can't see me until Tuesday, I am planning to use her measurements to order an additional sleeve from online companies where I have seen sleeves with 15-20 compression.
Yes, I was told to avoid suanas, jacuzzi, sunburn, insect bites, repetitive movements, extremes in temperature and injuries to the arm (no cutting of cuticles).The NP in my Medical Onc's office has a script ready for me to pick up on Monday. She said that and possibly a letter, may be necessary to get my insurance company to pay for the sleeve. I see the Rad Onc for my first month post- rad check-up on Monday. I will also ask him for one so I can order the second sleeve online directly from the manufacturer.
It is surprizing that there are so few lymphedema resources at the hospital where I am treated and work. The NP agreed that such services are sorely needed.When I was diagnosed with bilateral carpal tunnel syndrome several years ago, I was measured and provided the hand (gloves) braces for day and night use on the same floor of the orthopedic service where I saw my doctor. Amazing that at a such a large and well renowned teaching, medical center, lymphedema serices are so limited.
Thanks for your helpful information.
Hugs, K

Hi
the lightest for sleeve is 20/30; for glove is 15/20 they both called - Class I.
Good luck

MNLynn

compression garments
I just started with a physical therapist for lymphedema last week - so this is an interesting thread for me. My PT had my arm wrapped (looked like a cast - everyone asked if I had broken my arm) all of last week - she (PT) said it was making a difference in the swelling. Now I'll be doing daily massage on the arm and wearing a sleeve during the day (I don't even know the details about the sleeve - I'll have to look at that!). I also have swelling on the back of my underarm area, so I'm scheduled to stop by our "healthcare accessories" store tomorrow to get fitted for a mastectomy bra that will come up higher under my arm and keep pressure on that area.

Isn't it fun!!?? Really, if this is what I have to deal with in exchange for having the cancer gone, I can't complain. (I hope that cancer is gone . . . I know, obviously, that there is no guarantee on that.)

♥ Lynn ♥

MNLynn

KayNYC said:

Thanks for the offer to share the info
I have been reading alot about Lymphedema online and the boards on csn. Which sleeve worked the best for you? My PT wanted a compression of 15-20 but when I called the Pharmacy where the fitter is employed, they told me that they only have them for 20-30. I contacted the PT who said ideally, the 15-20 would be best however the 20-30 would also work. Since the fitter can't see me until Tuesday, I am planning to use her measurements to order an additional sleeve from online companies where I have seen sleeves with 15-20 compression.
Yes, I was told to avoid suanas, jacuzzi, sunburn, insect bites, repetitive movements, extremes in temperature and injuries to the arm (no cutting of cuticles).The NP in my Medical Onc's office has a script ready for me to pick up on Monday. She said that and possibly a letter, may be necessary to get my insurance company to pay for the sleeve. I see the Rad Onc for my first month post- rad check-up on Monday. I will also ask him for one so I can order the second sleeve online directly from the manufacturer.
It is surprizing that there are so few lymphedema resources at the hospital where I am treated and work. The NP agreed that such services are sorely needed.When I was diagnosed with bilateral carpal tunnel syndrome several years ago, I was measured and provided the hand (gloves) braces for day and night use on the same floor of the orthopedic service where I saw my doctor. Amazing that at a such a large and well renowned teaching, medical center, lymphedema serices are so limited.
Thanks for your helpful information.
Hugs, K

WHCRA
Kay - If your insurance covers a mastectomy, I think they also have to cover complications from that - such as lymphedema (wouldn't that include the compression sleeves needed to treat that?). And, I think that would apply even if you didn't have a mastectomy, but had lymph nodes removed and had lymphedema resulting from that.

http://www.cancer.org/Treatment/FindingandPayingforTreatment/ManagingInsuranceIssues/womens-health-and-cancer-rights-act

Hope things go well for you!

♥ Lynn ♥

DebbyM

RE said:

PT & Lymphedema
Hi Kay, I have been dealing with lymphedema for about 5 years now. I go for PT about twice a year 6 weeks sessions 3 times a week each time. It helps but has to be done by someone who is qualified as the treatment must be done gently and correctly so as not to cause more pain and swelling.

Please look into getting a compression sleeve (I wear mine daily) as they can help to reduce the pain and sweeling you are having. If you are interested I have several pages of information regarding Lymphedema on onco. gave me listed on my page here on csn. They are on page 24 of my expressions you can get there by clicking on my name. If you have not visited this site there is a lot of good information here as well.

Lymphedema

Hope this helps,

RE

Thanks for the site RE!

Thanks for the site RE!

Flakey_Flake

I get lymphedema in my
I get lymphedema in my breast and trunk. I live in a rural community, and have not even tried to find a lymphedema specialist. What we do have is PT therapists who are certified in lymphodema. They know the lymph system, and how it works. I go 1 - 2 time week, and they do light massage to change the route of the lymph system away from where my lymph glands were removed. They always show me how to do it myself. (I live alone, so who else is going to help?) I can do some of the massage myself to help keep the swelling at bay, but some places I cannot reach. Unfortunately I am not a contortionist. I cannot wear a bandage, which is one solution, because I alergic to most adhesives. They are going to fit me with a lymphodema bra, which should help. I am not at all uncomfortable with my lymphedema treatments, or the results. Fortunately it has not gotten to my arm, which I treat like a baby most of the time. I had a lumpectomy, and have pretty much full range of motion on the affected side.

Kay, I hope you can find a acceptable solution to your lymphedema. What I have is not really painful, but better to "nip in in the bud!" (quote from Barney Fife, if anyone is old enough to remember.) BTW, I was referred by my rad onc, who are generally more concerned about lymphedema than med oncs. Good Luck! Let us know what happens, please.

Sharon

KayNYC

Flakey_Flake said:

I get lymphedema in my
I get lymphedema in my breast and trunk. I live in a rural community, and have not even tried to find a lymphedema specialist. What we do have is PT therapists who are certified in lymphodema. They know the lymph system, and how it works. I go 1 - 2 time week, and they do light massage to change the route of the lymph system away from where my lymph glands were removed. They always show me how to do it myself. (I live alone, so who else is going to help?) I can do some of the massage myself to help keep the swelling at bay, but some places I cannot reach. Unfortunately I am not a contortionist. I cannot wear a bandage, which is one solution, because I alergic to most adhesives. They are going to fit me with a lymphodema bra, which should help. I am not at all uncomfortable with my lymphedema treatments, or the results. Fortunately it has not gotten to my arm, which I treat like a baby most of the time. I had a lumpectomy, and have pretty much full range of motion on the affected side.

Kay, I hope you can find a acceptable solution to your lymphedema. What I have is not really painful, but better to "nip in in the bud!" (quote from Barney Fife, if anyone is old enough to remember.) BTW, I was referred by my rad onc, who are generally more concerned about lymphedema than med oncs. Good Luck! Let us know what happens, please.

Sharon

all in the same boat
Thanks everyone for the good advice. I did see the PT on Friday and have a followup with her this Friday. Go to the surgical supply tomorrow for fitting for low compression sleeve and glove. Have to go to Memioral Sloan here in NYC for a the compression bra. Saw my Rad Onc this AM and he gave me scripts for the bra, sleeve and glove. I have been doing the gentle lymph massage/drainage with good results. My arm measurements taken this AM during my Rad Onc follow-up were almost identical on both upper arms and identical at the wrist and four inches above it.He said he expects the breast swelling to subside and didn't really voice his opinion about the effectiveness of the compression bra. The nurses however seemed more encouraging about the effectiveness of the lymphedema treatment.Won't see the Rad Onc again until after Christmas. The clock is ticking and I am getting closer to my vacation on 7/23. Hopefully with the massage, sleeve and bra, we will get this swelling under control. Yes, it is really a small price to pay in comparison to not getting treatment.Life is indeed precious.
Hugs, K