Lymphedema

Skybuf

Anyone with this, usually in arm or leg, please can we discuss it. I have it in my left arm after having chemo, rads, and lymph nodes removed. I am not having much success getting information about it, other than what's on line, don't know anyone here with it and the dr's don't know much either. I have to wear a sleeve but they can't get it to fit right?
sigh

zahalene

It's discouraging, I know.
It's discouraging, I know. I had 2 radical mastectomies at different times and had lymphedema in both arms, but worse in left arm (second one). Maybe because I didn't use it as much and keep circulation in good shape.
Anyhow, it does get better. I never wore a sleeve or anything like that. Just dealt with it on my own. Sure did ache sometimes. My surgeries were in '86 and '88. These days I hardly notice it except when I do too much lifting or pushing and shoving (been remodeling house).
Keep hounding them till they get it right and do everything that can be done about it. No use suffering any more than necessary. My biggest mistake was just accepting whatever happened and putting up with it.

Skybuf

zahalene said:

It's discouraging, I know.
It's discouraging, I know. I had 2 radical mastectomies at different times and had lymphedema in both arms, but worse in left arm (second one). Maybe because I didn't use it as much and keep circulation in good shape.
Anyhow, it does get better. I never wore a sleeve or anything like that. Just dealt with it on my own. Sure did ache sometimes. My surgeries were in '86 and '88. These days I hardly notice it except when I do too much lifting or pushing and shoving (been remodeling house).
Keep hounding them till they get it right and do everything that can be done about it. No use suffering any more than necessary. My biggest mistake was just accepting whatever happened and putting up with it.

thanks
Knowing your there, thanks

Marcia527

I didn't have lymphedema but
I didn't have lymphedema but I did go to a physical therapist that claimed they were experts in helping people with lymphedema. They used massage and taught a type of self massage (suppose to help move the fluid to other lymph nodes). Also the hospital had classes on lymphedema to help people cope. You might ask the hospital/cancer center about it or a nurse.

NorcalJ

Lymphedema
There are now physical therapists who are trained and specialize in treatment of lymphedema. If your Dr. or cancer center doesn't know, see if there is a state organization of P.T.'s who could give you a recommendation.
They will know all about exercises, sleeves, etc.

Good luck and let us know what you find out. I'm sure many other people have the same questions.

CR1954

Thanks for posting.....
Thanks for posting about lymphedema, as I was going to ask about it.

My hand, wrist and forearm have been swollen...not tremendously swollen, but watch & rings have been snug, and it's noticeable compared to my other hand and arm, for the past week or two.
Is this something I need to call my surgeon about or can it wait until I see her in 7 weeks???

Thanks,
CR

Eil4186

Massage for lymphadema
I don't have lymphadema but I know several women who do and they keep it under excellent control by wearing a sleeve and doing massage to keep things flowing. There are massage therapists who specialize in this problem and they can teach you how to do it yourself.
Try checking with your cancer center for a referral. Good luck.

Skybuf

CR1954 said:

Thanks for posting.....
Thanks for posting about lymphedema, as I was going to ask about it.

My hand, wrist and forearm have been swollen...not tremendously swollen, but watch & rings have been snug, and it's noticeable compared to my other hand and arm, for the past week or two.
Is this something I need to call my surgeon about or can it wait until I see her in 7 weeks???

Thanks,
CR

Lymphedema
CR I would get your hand/arm attended to as quick as possible....when mine started I was taken to Emerg for something else, the nurse there was excellent, she said you need your arm wrapped and see your oncologist ASAP to start treatment. I have had massage therapy already, had manual lymph drainage, it works.....what I'm wonder is, is there anything else out there, anything not so expensive because at $70.00 a treatment and you need at least one a week, it's near impossible for me. Yes we must look after ourselves, but I can't justify $70.00 a week we don't have for a treatment. I am wondering if these Pumps work? if these Reese Sleaves you wear at night work? I am looking for answers and there aren't any here......remember I live in Ontario Canada...we have it I'm sure, but knowone seems to know WHERE????? I asked the Oncology dept, dr's office, Hospitals even the Physio therapist that came....they don't know much, not many here have that she said....well they better find the answers because more people are being diagnosed daily who will need the answers....
I need a lymphedema clinic where they know what they are doing.....:( waaaaaa there isn't one

RE

LYMPHEDEMA
Hello Sky,

I have lymphedema in my left arm and left hand. I have found that the more you stress it the more it will annoy you. I wear a sleeve I get mine at discountsurgical.com they are less expensive and they have a section that tells you exactly how to measure your arm to ensure you get the correct sleeve. I have tried a couple different brands and I like the JUZO brand with the silicon on the upper band. I have to go right now, however I will email you via CSN later tonight. My best to you.

RE

sylva

I had 18 lymph nodes
I had 18 lymph nodes removed, what puts me on high risk for lymphedema. So I went to a specialist in Lymphedema at the hospital and he sent me to a therapist who taught me how to do a massage to help move the lymphatic fluids. He also ordered a glove and sleeve for exercise and in case that I travel by plane.
I don't know what part of Ontario, Canada, you live, but I looked in the internet, under PREVENTION AND TREATMENT OF LYMPHEDEMA ONTARIO CANADA, and it's showing different places in Kingston, London, Hamilton...
There's so much we need to be careful, like no blood pressure or shots in the affected arm, to use gloves when working in the garden, carry with you like an emergency kit with alcohol wipe, neosporin, band aid and if you hurt that arm or hand take care right away. Avoid places where there are mosquitoes. Avoid saunas or hot tubs.
It's something we don't have to panic about, but we have to be very careful. Good luck.

RE

Lymphedema guidelines
Hi Skybuf,

I sent you an email but I am not sure it was sent correctly, seemed to have a glitch. Wanted to let you know I have posted two articles in the expressions gallery that deal with Lymphedema Guidelines. Just double click on the icon and they should enlarge. I also wanted to ask you to beware of sudden rashes, feeling of extreme heaviness and fever. I have had a few infections and this is how they began. Doctor prescribed meds and it cleared up.

(((((HUGS)))))

RE

cabbott

Eil4186 said:

Massage for lymphadema
I don't have lymphadema but I know several women who do and they keep it under excellent control by wearing a sleeve and doing massage to keep things flowing. There are massage therapists who specialize in this problem and they can teach you how to do it yourself.
Try checking with your cancer center for a referral. Good luck.

A friend of mine cut costs
A friend of mine cut costs drastically by bringing her husband and getting the therapist to teach him to do the massage on her. She also learned how to pitch hit when necessary, though it was better when someone else did it. It can be a close friend if you don't have a (willing) hubby. The massage worked better for her than the pump, though the pump was sometimes around more...

C. Abbott

KathiM

Guard it well!
The thing to realize is that this can happen anytime, so guard your arm well, even after you get the swelling gone. If you ride on an airplane, wear your sleeve, and stretch your arms up and reach, just like the gal on the video tells you.

Don't wear tight, restrictive clothing (armbands, etc).

Lift only light objects with this arm. I am a computer consultant, used to lifting monitors and computers. After my surgery, I always ask for help now...

Hugs, Kathi

KathiM

sylva said:

I had 18 lymph nodes
I had 18 lymph nodes removed, what puts me on high risk for lymphedema. So I went to a specialist in Lymphedema at the hospital and he sent me to a therapist who taught me how to do a massage to help move the lymphatic fluids. He also ordered a glove and sleeve for exercise and in case that I travel by plane.
I don't know what part of Ontario, Canada, you live, but I looked in the internet, under PREVENTION AND TREATMENT OF LYMPHEDEMA ONTARIO CANADA, and it's showing different places in Kingston, London, Hamilton...
There's so much we need to be careful, like no blood pressure or shots in the affected arm, to use gloves when working in the garden, carry with you like an emergency kit with alcohol wipe, neosporin, band aid and if you hurt that arm or hand take care right away. Avoid places where there are mosquitoes. Avoid saunas or hot tubs.
It's something we don't have to panic about, but we have to be very careful. Good luck.

GREAT point!!!
I just had my colonoscopy today....the nurse put an armband on my 'special' arm that said "NO IV's Pressure cuffs, ect". I never let my arm be used...sad, too...there are some beautiful veins there...lol...

I have a friend who was having some surgery. She wrote on her special arm..."DO NOT USE" in big black print...

Hugs, Kathi

KitCat7

Lymphedema
Hi. I just signed on because I am so frustrated with my lymphedema and can't seem to get any satisfying answers from my doctors. I had a mastectomy with lymph node removal, chemo, and radiation in 1999. I was not made aware of the possibility of lymphedema, but developed it after a few years. It is now so severe that I cannot wear long sleeves, and have frequent bouts of cellulitis (infection of the tissue and cells under the skin) I did go for massage therapy until the insurance cut me off. I did get a pump for home and also have a compression sleeve. When I have the cellulitis, though, I can't wear the sleeve or pump. Lately, when I do go back to pumpiing it seems to set off another bout of cellulitis. My arm is literally twice the size of my other arm. My family doc prescribes anti-biotics for the cellulitis, but no one seems to want to address this issue. I recently started waking up with an itchy arm also. Are there any doctors out there that specialize in this area?

hward2007

I have it lymphdema
I have a terrable time with lymphdema, my surgial oncoligest had to write me a perscription to go to a specialist that teaches the message and does the wraps at the hospital in my town. You have to go 4 days a week for 4 to 6 weeks.

Heather

Cindyjoy

hward2007 said:

I have it lymphdema
I have a terrable time with lymphdema, my surgial oncoligest had to write me a perscription to go to a specialist that teaches the message and does the wraps at the hospital in my town. You have to go 4 days a week for 4 to 6 weeks.

Heather

more info
The University of Virginia Dept. of surgery has a woman Patrice Y. Neese,MSN, R.N.,ANP-BC who works with lymphodema. I saw her and she made me feel like I can deal with this. She is also doing a study on the use of Kinesio tape for this. If you saw the summer olympic's beach volley ball the tape is what the US tall girl had on her shoulder. Patrice put some on my arm and I found the lymph drainage better than with the sleeve and it's so much more comfortable (and cool!). It can be purchased at bandages plus.com. If you are wanting an appointment the # is 434 924 1730.