Lymphedema?
Monday evening I had done some transplanting which involved a fair amount of dirt digging--didn't think to wear the sleeve, so of course my arm was swollen yesterday. Last night I put it on after I got home from work and wore it overnight. Last evenings activities included a vigorous ball throwing session with my border collie. This morning my hand is swollen. I took the sleeve off, and it seems to have gone down a bit in the two hours I've been up.
I received no instructions on when to wear the sleeve, can anyone give me any information? Do I need to call someone and ask what to do? If so, who? The surgeon who did the masectomy and lymph node removal is the one who prescribed the sleeve, but I have a wonderful female plastic surgeon also.
Any help/information from you is much appreciated. I'm very active and with summer coming want to be able to do the things I enjoy outside--gardening, yardwork, fishing, camping. And I'm planning on helping my daughter paint her house this weekend, which may not help the swelling.
Cindy
Comments
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some answers here
there are a few posts on here about lymphedema. Also check out the national lymphedema network at lymphnet.org
No offense intended towards your doctors, it would be in your best interest to contact a lymphedema specialist. Mine actually measured me to figure the correct size sleeve, etc.
good luck. Oh - just to keep your spirits up - you CAN do anything you want according to my lymphedema specialist, you will just need to possibly do it less or differently.0 -
Thanks and another questionMelaniedoingwell said:some answers here
there are a few posts on here about lymphedema. Also check out the national lymphedema network at lymphnet.org
No offense intended towards your doctors, it would be in your best interest to contact a lymphedema specialist. Mine actually measured me to figure the correct size sleeve, etc.
good luck. Oh - just to keep your spirits up - you CAN do anything you want according to my lymphedema specialist, you will just need to possibly do it less or differently.
I went to the web site and looked around. Saw the section about infections and went huh! The week before Easter I felt awful--chills, fever. Mid-week I developed a bright red spot on a reconstructed area where I had gotten an infection right after surgery. Called plastic surgeon, she sent me for bloodwork and put me on antibotics and scheduled an appointment to see me the following morning, did bloodwork again and wanted to put me in hosp. for IV antibiotics for a couple of days. I said no. 2 hrs later was sent home with quadrupled antibiotics to take. I'm still on them but at a dose that is just double a normal dose. Anyway--the morning I went to see her a big, bright red 'lump' popped out right on the elbow of my arm. The plastic surgeon and the doctor she consulted about what to do other than put me in the hosp, agreed that the infection probably started somewhere else, but they have no idea where. Suppose it is possible it actually started somewhere in that arm from lymphedema?0 -
See a CERTIFIED Lymphedema Therapist ASAP!
Tchere is so much that you need to learn about managing lymphedema and it takes a CERTIFIED Lypmhedema Therapist (not a PT who says they know abnout LE - unless they arte also a certified LE therapist - some are) to give you that info and to evaluate you. The sooner thee better.
You need to be taught MLD (Manual Lymphatic Drainage) massages that you do, get wrapped to reduce the swelling so proper measurements can be gotten for the right sleeve/glove fit, There are also MLD machines you can have at home.
The level of compression is as important as fit. For me, I have to have low compression - high increases my swelling drastically so have to have low. We all do not fit in their 'store shelf' sizes - I don't. They do not make a sleeve that fits the circumferance measurements. That is long enough for my arm in light compression. Also for me getting the right glove has been the hardest - almost 2 1/2 yrs and we're still working on it; my hands are weird - slightly webbed so it's taken a lot longer to get it right. If you do not fit in stock garments then you can get ones that are custom made for you. My custom day garments are by Juzo because that the company that VA deals with.
Do not wear the sleeve you have over night - there are night sleeves for overnight use. Day and night sleeves work on different principles. Day sleeves are designed to work with your active arm, night sleeves are designed cto work with a passive (sleeping) arm. My night sleeve is a Solaris Tribute which I have 2 over sleeves to use as needed - usually only during really nasty weather (blizzards). I use an Isotoner glove (suggested by my LE guy) under my Tribute as it has a gauntlet style hand and I like the feel of a glove.
I have been very fortunate, especially considering I'm not as careful as many are, I've not had any infection/cellulitis. Infection is definately something that has to be CAREFULLY monitored.
Please see a Certified Lymphedemolgy Therapist as soon as possible. It's not going to get any better on it's own (probably get worse probably) - but with appropriate care it cann be manazged and the sooner you start that management the better.
Winyan -The Power Within
Susan0 -
exactlyRague said:See a CERTIFIED Lymphedema Therapist ASAP!
Tchere is so much that you need to learn about managing lymphedema and it takes a CERTIFIED Lypmhedema Therapist (not a PT who says they know abnout LE - unless they arte also a certified LE therapist - some are) to give you that info and to evaluate you. The sooner thee better.
You need to be taught MLD (Manual Lymphatic Drainage) massages that you do, get wrapped to reduce the swelling so proper measurements can be gotten for the right sleeve/glove fit, There are also MLD machines you can have at home.
The level of compression is as important as fit. For me, I have to have low compression - high increases my swelling drastically so have to have low. We all do not fit in their 'store shelf' sizes - I don't. They do not make a sleeve that fits the circumferance measurements. That is long enough for my arm in light compression. Also for me getting the right glove has been the hardest - almost 2 1/2 yrs and we're still working on it; my hands are weird - slightly webbed so it's taken a lot longer to get it right. If you do not fit in stock garments then you can get ones that are custom made for you. My custom day garments are by Juzo because that the company that VA deals with.
Do not wear the sleeve you have over night - there are night sleeves for overnight use. Day and night sleeves work on different principles. Day sleeves are designed to work with your active arm, night sleeves are designed cto work with a passive (sleeping) arm. My night sleeve is a Solaris Tribute which I have 2 over sleeves to use as needed - usually only during really nasty weather (blizzards). I use an Isotoner glove (suggested by my LE guy) under my Tribute as it has a gauntlet style hand and I like the feel of a glove.
I have been very fortunate, especially considering I'm not as careful as many are, I've not had any infection/cellulitis. Infection is definately something that has to be CAREFULLY monitored.
Please see a Certified Lymphedemolgy Therapist as soon as possible. It's not going to get any better on it's own (probably get worse probably) - but with appropriate care it cann be manazged and the sooner you start that management the better.
Winyan -The Power Within
Susan
What Rague said...0 -
Lymphedema
I just got lymphedema too and the surgeon sent me to the hospital Lymhedema clinic. Most larger hospitals have a lymphedema clinic. I hopped right on the lymphedema (like white on rice) and have reduced the swelling quite a bit. Do not hesitate to insist on going to a lymphedema clinic. My surgeon said it was only a mild case but sent me there as they are the experts in this area. The sooner you hop on the issue the better off you will be.
As Rague said the compression sleeve is not to be worn at night. When you go to a lymphedema clinic they set up several appointments with you and you start getting educated on the best way to deal with the swelling. Yes infection is a major concern. When gardening wear gloves always. Call the doctor who gave you the sleve and tell him what happened. Explain that you had no instruction and see if he will refer you to a lymphedema clinic or a certified lymphedimiologist (I think that is what Rague called it). If the answer to this request is no, then ask your medical oncologist or your radiation oncologist. You need education along with treatment as this issue will be lifelong.0 -
I did call the surgeon's office yesterday and then had to call my primary physician's office. They did refer me to a certified lymphedema therapist (she's an occupational therapist) who is also lyphedema certified. After calling the office she is with I have an appointment with her on the 14th....she was supposed to call me yesterday and do some 'in the meantime' counseling, but didn't and she is off until Monday.laughs_a_lot said:Lymphedema
I just got lymphedema too and the surgeon sent me to the hospital Lymhedema clinic. Most larger hospitals have a lymphedema clinic. I hopped right on the lymphedema (like white on rice) and have reduced the swelling quite a bit. Do not hesitate to insist on going to a lymphedema clinic. My surgeon said it was only a mild case but sent me there as they are the experts in this area. The sooner you hop on the issue the better off you will be.
As Rague said the compression sleeve is not to be worn at night. When you go to a lymphedema clinic they set up several appointments with you and you start getting educated on the best way to deal with the swelling. Yes infection is a major concern. When gardening wear gloves always. Call the doctor who gave you the sleve and tell him what happened. Explain that you had no instruction and see if he will refer you to a lymphedema clinic or a certified lymphedimiologist (I think that is what Rague called it). If the answer to this request is no, then ask your medical oncologist or your radiation oncologist. You need education along with treatment as this issue will be lifelong.
I hate wearing gloves when gardening, but finally found a brand that fits and bought 3 pair. I have been wearing them the last couple of weeks, especially when working with rose bushes :-)
I'm especially frustrated because originally my surgeon told me I shouldn't worry about the swelling unless it gets to my hand...He obviously doesn't understand that it hurts when your upper arm swells...
I'm going to be very careful between now and the 14th to not overdo...but I'm going to help paint my daughter's house on Saturday....
Thank you all. I knew I would get good advice here!
Cindy0 -
My LE guy is an OT also - hemidnight10 said:I did call the surgeon's office yesterday and then had to call my primary physician's office. They did refer me to a certified lymphedema therapist (she's an occupational therapist) who is also lyphedema certified. After calling the office she is with I have an appointment with her on the 14th....she was supposed to call me yesterday and do some 'in the meantime' counseling, but didn't and she is off until Monday.
I hate wearing gloves when gardening, but finally found a brand that fits and bought 3 pair. I have been wearing them the last couple of weeks, especially when working with rose bushes :-)
I'm especially frustrated because originally my surgeon told me I shouldn't worry about the swelling unless it gets to my hand...He obviously doesn't understand that it hurts when your upper arm swells...
I'm going to be very careful between now and the 14th to not overdo...but I'm going to help paint my daughter's house on Saturday....
Thank you all. I knew I would get good advice here!
Cindy
My LE guy is an OT also - he got his Masters in OT before he got his LE Certification.
I hate wearing gloves but never understood why until after having to get custom gloves for LE. Gloves (work/winter/riding/etc.) Have never fit - fingers too long almost always. I always thought that I had short fingers but now know it's the webbing that nakes gloves have too long fingers for me. Live and learn.
It is amazing to me how many Drs apparently have no clue about LE - especially the surgeons and Chemo/Rads Drs. Mine were the first to notice it with me. After surgery, surgeon said I had a 50/50 chance/probabilty of developing LE based on the 19 pos. Nodes he took out. Chemo Dr told me before starting neo-adjuvant A/C that IBC has at least a 50/50 of developing LE. I also saw Rads Dr before Chemo and he said something similar but don't remember exactly what. It was during Taxol that both Dr G and Dr T noticed it before I did and they both called my PA to get an appt. with K. (my LE guy).
(Laughs - a Lymphedemologist is a Dr who deals with the lymphatic system. There aren't many of them around. For our care dealing with LE, we see a Certified Lymphema Therapist.)
Personally, I don't have pain from my LE - a feeling of 'tightness' at times - yes - but never have had pain. My worse area is basically the elbow. Weather makes a big difference. For me, summer is better as I'm a lot more active (winters are brutal here) and we have higher pressure most of the time. For some winter is better. That is not to say that I am not active in winter as I go to the gym every other day and do quite a bit but summer let's nme do that and also mow my yard (and 3 others to help out others) every few days, I bike, I work the horses - I do a lot more than during winter. All my med staff say do anything and everything you wantto/feel like - so I do
This may sound strange to some but I'm kind of glad that LE decided to come on during the first winter. I never had to think/worry about 'should I do that - it might trigger LE?'. It's not an ax hanging over my head - it's here and I have to manage it BUT it is not a threat lurking around that might happen - so I just do what I want and take care of the management.
Winyan - The Power Within
Susan0 -
Cindy I have just finishedmidnight10 said:I did call the surgeon's office yesterday and then had to call my primary physician's office. They did refer me to a certified lymphedema therapist (she's an occupational therapist) who is also lyphedema certified. After calling the office she is with I have an appointment with her on the 14th....she was supposed to call me yesterday and do some 'in the meantime' counseling, but didn't and she is off until Monday.
I hate wearing gloves when gardening, but finally found a brand that fits and bought 3 pair. I have been wearing them the last couple of weeks, especially when working with rose bushes :-)
I'm especially frustrated because originally my surgeon told me I shouldn't worry about the swelling unless it gets to my hand...He obviously doesn't understand that it hurts when your upper arm swells...
I'm going to be very careful between now and the 14th to not overdo...but I'm going to help paint my daughter's house on Saturday....
Thank you all. I knew I would get good advice here!
Cindy
Cindy I have just finished my second round of physical therapy with a lymphedema therapist. I have to wear sleeve and glove when traveling and glove at night to keep swelling down. It is so important to follow the advise of the therapist so that you won't have flare-ups. There are so many doctors that are not fully educated on lymphedema. My surgeon is a wonderful surgeon but didn't tell me about side effects of losing lymph nodes. I learned from my therapist how the lymphatic system works and how important it is in ridding our bodies of toxins. It is very important not to get cuts or scratches on areas of lymphedemia. I too like to work in the garden and yard, but was always getting scratches from limbs, thorns, etc. I purchased a pair of Nike arm sleeves (like the basketball players wear) to protect my arms when doing yard work. They really help and are not very expensive. Good luck with your therapy and stay on top of taking care of yourself!0 -
Another idea
Since I worked in food service several years ago I thought to buy a meat slicer glove that they use when using the meat slicer. I was going to get it because I do a lot of home canning of food. Well I got 20 lbs. of asparagus before ordering the glove. So I got out one of those dollar store stretchy gloves so that I wouldn't cut my thumb when I cut up the asparagus. It worked very well. Because I live up north and like to wear them to the ice arena when I ice skate I have a ton of them. The meat slicer glove was going to cost me between $15-25. So there is a cheap solution.
I live a very active lifestyle so my first question to the physical therapist was this. "How much is having this going to impact my life?" She didn't answer me directly until about the 3rd session as I think she wanted to see how compliant I was going to be with therapy. It does not have to limit you a lot if you practice your treatment regimen.
I was reading some of the research and those that have been exercising all along stand no greater risk of getting lymphedema than those that don't. Of course you are supposed to be careful even before lymphedema regarding not wearing tight things on that arm. With exercising and using stretch bands you are not supposed to wrap them around your hands. It seems that they actually like it when you do mild exercise (such as range of motion) as this tends to assist the lymph to move a bit. Your therapist will probably give you exercises that she wants you to do. I had been going to a senior energize class prior to getting lymphedema and she wanted me to continue this. Almost all the exercises are good and I only have to adapt one or two of them because of my lymphedema.0 -
Good luck with yourmidnight10 said:I did call the surgeon's office yesterday and then had to call my primary physician's office. They did refer me to a certified lymphedema therapist (she's an occupational therapist) who is also lyphedema certified. After calling the office she is with I have an appointment with her on the 14th....she was supposed to call me yesterday and do some 'in the meantime' counseling, but didn't and she is off until Monday.
I hate wearing gloves when gardening, but finally found a brand that fits and bought 3 pair. I have been wearing them the last couple of weeks, especially when working with rose bushes :-)
I'm especially frustrated because originally my surgeon told me I shouldn't worry about the swelling unless it gets to my hand...He obviously doesn't understand that it hurts when your upper arm swells...
I'm going to be very careful between now and the 14th to not overdo...but I'm going to help paint my daughter's house on Saturday....
Thank you all. I knew I would get good advice here!
Cindy
Good luck with your appointment on the 14th. I hope you get some good help. Let us know how it goes.
Hugs, Debby0 -
lymphedema
I too got lympedema after my mastectomy and 21 lympnodes removed. My arm swelled about two weeks after surgery. I went to a PT and learned the massage to stimulate my other lymphnodes. I also had the sleeves, one to wear during the day and the other at night. I was told I had to wear them all the time for the rest of my life. Very depressing. My hand kept swelling up when I had the sleeve on because I have arthritis in my hand. So I stopped wearing the sleeves. I don't see any difference in my arm. It hasn't gotten worse. I still do execises, swimming and stretching and light weights, but I don't wear the sleeves. My arm is no more or less swollen than it was after the surgery. I do wrap my hand that has the arthritis. So I would talk to a therapist about the sleeves. They haven't helped me.0 -
See a Certified LE Therapistrealmarie said:lymphedema
I too got lympedema after my mastectomy and 21 lympnodes removed. My arm swelled about two weeks after surgery. I went to a PT and learned the massage to stimulate my other lymphnodes. I also had the sleeves, one to wear during the day and the other at night. I was told I had to wear them all the time for the rest of my life. Very depressing. My hand kept swelling up when I had the sleeve on because I have arthritis in my hand. So I stopped wearing the sleeves. I don't see any difference in my arm. It hasn't gotten worse. I still do execises, swimming and stretching and light weights, but I don't wear the sleeves. My arm is no more or less swollen than it was after the surgery. I do wrap my hand that has the arthritis. So I would talk to a therapist about the sleeves. They haven't helped me.
A sleeve without a glove will cause hand swelling. They need to both be used to work in conjunction for them to work. Sleeves aslo come in different compression levels - some need lighter, some medium and some heavy. For me, I have to have the light compression - heavier makes it much worse.
Were you wrapped til the swelling was down so a sleeve and glove could be properly fitted? fit the sleeve? That is standard first TX
PT's are not trained in LE managemnt unless they are also a Certified Lymphedema Therapist - some are but not most. My Certified Lymphedema Therapist has his Master in OT. The few times I've seen PT for other issues they always call him and check with him to be sure if it deals with anything upper body even when on other side. Please do see a Certified LE Therapist for knowledgeable care - not just stick a sleeve on and that's it. It's more complex than that. LE can be manage but it will not go away. There are also MLD machines that work good.
Winyan - The Power Within
Susan0 -
Oops - triple postrealmarie said:lymphedema
I too got lympedema after my mastectomy and 21 lympnodes removed. My arm swelled about two weeks after surgery. I went to a PT and learned the massage to stimulate my other lymphnodes. I also had the sleeves, one to wear during the day and the other at night. I was told I had to wear them all the time for the rest of my life. Very depressing. My hand kept swelling up when I had the sleeve on because I have arthritis in my hand. So I stopped wearing the sleeves. I don't see any difference in my arm. It hasn't gotten worse. I still do execises, swimming and stretching and light weights, but I don't wear the sleeves. My arm is no more or less swollen than it was after the surgery. I do wrap my hand that has the arthritis. So I would talk to a therapist about the sleeves. They haven't helped me.
Winyan - The Power Within
Susan0 -
Oops - double postrealmarie said:lymphedema
I too got lympedema after my mastectomy and 21 lympnodes removed. My arm swelled about two weeks after surgery. I went to a PT and learned the massage to stimulate my other lymphnodes. I also had the sleeves, one to wear during the day and the other at night. I was told I had to wear them all the time for the rest of my life. Very depressing. My hand kept swelling up when I had the sleeve on because I have arthritis in my hand. So I stopped wearing the sleeves. I don't see any difference in my arm. It hasn't gotten worse. I still do execises, swimming and stretching and light weights, but I don't wear the sleeves. My arm is no more or less swollen than it was after the surgery. I do wrap my hand that has the arthritis. So I would talk to a therapist about the sleeves. They haven't helped me.
Winyan - The Power Within
Susan0 -
I rembered to ask today
All the physical therapists at my lymphedema clinic are certified lymhedema therapists. They were rather suprised how much I knew before my first visit there. I studied up on the issue before my appointment and I think it helped me get past most of the depressed feeling I might have gotten had I needed to process all the information at once. The way I figured it is that I would rather research than worry. The National Cancer Institute seems to have a lot or information on lymhedema.0 -
Wishing you also good luck!laughs_a_lot said:Another idea
Since I worked in food service several years ago I thought to buy a meat slicer glove that they use when using the meat slicer. I was going to get it because I do a lot of home canning of food. Well I got 20 lbs. of asparagus before ordering the glove. So I got out one of those dollar store stretchy gloves so that I wouldn't cut my thumb when I cut up the asparagus. It worked very well. Because I live up north and like to wear them to the ice arena when I ice skate I have a ton of them. The meat slicer glove was going to cost me between $15-25. So there is a cheap solution.
I live a very active lifestyle so my first question to the physical therapist was this. "How much is having this going to impact my life?" She didn't answer me directly until about the 3rd session as I think she wanted to see how compliant I was going to be with therapy. It does not have to limit you a lot if you practice your treatment regimen.
I was reading some of the research and those that have been exercising all along stand no greater risk of getting lymphedema than those that don't. Of course you are supposed to be careful even before lymphedema regarding not wearing tight things on that arm. With exercising and using stretch bands you are not supposed to wrap them around your hands. It seems that they actually like it when you do mild exercise (such as range of motion) as this tends to assist the lymph to move a bit. Your therapist will probably give you exercises that she wants you to do. I had been going to a senior energize class prior to getting lymphedema and she wanted me to continue this. Almost all the exercises are good and I only have to adapt one or two of them because of my lymphedema.
Wishing you also good luck!0
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