Posted on: Aug 22, 2009 01:10PM
I am three weeks post surgery. I had a bilateral mast., with all lymphnodes (21) taken out on my right side. My left arm is pretty much back to normal. My right arm is in pain. I can not straighten my elbow, and I feel a pulling tightness from my armpit to my wrist. I noticed a cord under my armpit but do not really see anything down my arm. I see a cord down my ribs, but that isn't bothering me as much. My surgeon says to continue with the arm exercises and apply some heat under my arm pit. There is swelling in my arm, though not a huge amount. Does anyone have experience with this symptom? Should I be getting myself to a phsical therapist, lyphodema specialist or just give it time to heal?Log in to post a reply
Posts 31 - 60 (122 total)
Dec 6, 2009 05:04PM Abbey11 wrote:
I had cording under one armpit after my bilateral mastectomy. It was explained to me as scar tissue from the sentinal node biopsy site. If you had 21 nodes out, I would guess that your cording is much worse. I went to a physical therapist who is also a lymphadema specialist and she told me to gently massage the cording a couple of times a day. It gradually disappeared after a couple of months. Good luck!
Dec 6, 2009 05:07PM Meece wrote:
I have been reading on this thread a bit. Thanks for the advice, Southport. I tink I will try the message.
Dec 9, 2009 03:58AM Bigapple09 wrote:
It was the PT who showed me how to do it. It was something I could not do when the cord was in my arm (since you need two hands to do it) but with the cord in my stomach I was able to. She showed me because sometimes they just pop up and its not always possible to get the appointment while the cord is still there, so I would for a few weeks in pain till an appointment opened up and by then it was resolved. I do agree you need to be advised by a PT and your Dr to make sure of what it is and what is safe for you to do.
Dec 12, 2009 04:47AM carcharm wrote:
I had 2 nodes removed in July of this year and am just finishing chemo this monday. I have been getting this pulling pain near my elbow but on the inner side. Is this possibly cording? I am overweight and it's hard to tell but it feels lumpy but I can't find any defiitive lumps. I had atypical cells-no malignancy- in one of the 2 nodes they took and always felt they should have gone back in to take more but my surgeon refused. How can you tell if it's cording/LE for sure? Would LN mets hurt like this? I meet with my onc in 2 weeks and will be sure to mention it.
Dec 12, 2009 06:27AM kira wrote:
I still have an old cord in my elbow--it feels like a piano wire. And it will act up if I'm too active.
Check out the diagram on the web page--you can see where the cords run.
Dec 12, 2009 07:29AM KAK wrote:
My shoulder/armpit/chest is a lot better from PT treatment, but it's amazing how much tissue has gotten involved in this mess. I've even had a little tennis elbow & rotator cuff soreness. What a mess. But lots better. I can stretch it myself now, which helps. I think we all just have to stay on top of this stuff. Now I've got coughing & shortness of breath. Oy. Had a negative chest Xray yesterday, thank goodness, but I have to go on some prednisone for a few weeks. I'm worn out. I swear, it's one thing after another.
Dec 16, 2009 06:32PM Neece wrote:
I thought that I was over the cording and swelling - massage, stretching, generally being careful - but just this week it has reccured worse than ever. No apparant reason. very depressing. Am now wearing a compression sleeve. Sigh.
Dec 18, 2009 05:54AM kira wrote:
Neece, do you have a LE therapist? I sounds like time for a recheck if you do, and if you don't it sounds like time to find a good person.
Dec 18, 2009 10:31AM KAK wrote:
Yes, I second what kira says. A good therapist really helps. BTW, I've even discovered recently that some of my lung tissue was also caught in this mess -- now I've got some fibrosis in my lungs according to a recent chestg x-ray. Too bad I can't have my PT massage that away!!
Dec 20, 2009 07:39PM kawee wrote:
Hello. I just found this site. I had 2 surgeries, April and July, finished radiation October 2. I noticed some pulling under my arm and armpit area. Went to PT, they massaged, then i got fluid under my arm. They started me on exercises and it's gotten worse. It is so tight and painful and now with the fluid, i don't know what's going on. The PT told me it was auxillary webbing, but why the fluid. I've laid off the exercises, and guess I'll go back to the surgeon. I'm supposed to go back to the PT, but things have gotten worse after 5 treatments. Can anyone shed some light on what's going on.
Dec 20, 2009 11:49PM KAK wrote:
Kawee, is the PT qualified to do manual lymph drainage? It is not like doing regular PT treatmwnt. You have to be really gentle & methodical. Maybe you need a different therapist.
Dec 21, 2009 05:47AM , edited Dec 21, 2009 06:27AM by kira
Kawee, axillary web is a risk factor for lymphedema, and there can be some lymphedema associated with it--the cords are thrombosed lymph vessels. KAK is right--there is no national standard for lymphedema therapists, and so many don't know anything about axillary web.
You might want to check out the credentials of your therapist (and credentials don't always mean a good therapist, but it's a start)
Re-reading your post--I saw exercises--well, I have difficulty with exercises--I'm fine with stretching, the Lebed method--but things like theraband are horrible for me. Also, I have to wear compression garments when I exercise. I want to strengthen my arms, but the theraband just hasn't been good for me.
So many PT's (not KAK) are indoctrinated in the model of assess, treat and discharge--which doesn't work for lymphedema, as it's a chronic condition. Often, they are quick to recommend exercises, and repetitive motion can make fluid worse.
For axillary web, the main exercise is stretching: slow over head, sideways and child's pose with arm's in from. And lay on your back with arms overhead, and twist your knees away from the affected side to give you a whole body stretch.
Hope you get relief and answers soon.
Dec 21, 2009 10:31AM kawee wrote:
From what they told me, they (2 ladies) went to some school for it. But the exercises they gave me really hurt. One is to lie down, take this bar, lift it over your head and then put your elbows on the floor and hold it for a count of five. It hurts alot. I am supposed to do 10 of them. It is making the situation worse. I didn't have fluid (that I could tell anyway) until after I started all this.
I found a lymphedema clinic in San Luis Obispo about 30 miles from where I live. Maybe I'll have the surgeon refer me there.
Dec 21, 2009 11:41AM , edited Dec 21, 2009 11:46AM by kira
Kawee, that sounds horrible--anything that hurts is NOT good--this is NOT a no pain/no gain situation, this is a pay attention to your body situation--anything that hurts or causes swelling is a bad idea.
The bar overhead with pressure on the elbows is not a good idea, IMO. The study on weight lifting that was released this year by Kathryn Schmitz had women lift no weight to start, and only gradually add weight as tolerated, and they wore custom compression garments, and had specially trained therapists and were evaluated immediately for flares. And they only got to be in the study if they were rock solid stable.
I like this web page from the Lance Armstrong Foundation, it was written by Jane Armer who is a noted researcher:
Here's what she says about exercise:
Here's some info from the stepupspeakout site
Going to some school for it doesn't cut it--the "gold standard" is 135 course and a year of supervision, and even with those credentials, some people aren't as good as others.
If the clinic in San Luis Obispo is good, it's worth the drive.
Dec 21, 2009 03:16PM KAK wrote:
Kawee, those are exercises for shoulder rotator cuff problems, not axillary cord problems!! STOP doing them!!!!
In the first place, they're inappropriate, and in the second place, any decent therapist treating LE or cording or any of this stuff should ALWAYS tell you gentle-only and stop if there's any discomfort at all. And don't be lifting things!!! Range of motion only!!
Boo on them. Find someone else. All PTs are not created equal and a training school does not make a good therapist.
Dec 21, 2009 10:05PM Neece wrote:
Kawee, I second the comments about the exercises. With my recent recurrence of axiallary web / cording, and swelling in the affected arm and hand, I am trying to do the stretches as described by Kira above, on a daily basis - at least twice per day. When I first do them it is uncomfortable (ie very tight feeling) but I hold each stretch of 30 seconds and it gradually loosens up the tightness. Any exercise you do should NOT make the discomfort worse but better the more you do it.
I have been seeing a LE therapist however she is finished for the year now until next Feb so I am sort of on my own. I do have a diagram she gave me showing self / carers' manual lymphatic drainage massage, that I am trying to do a few times a week.
The sleeve I wear for periods of a couple of hours when I am being active (doing housework etc) I am not sure if it helps. When I take it off my hand is even puffier though that doesn't last. It is such a confusing and mysterious area (and as others have commented, so little known about)
Dec 22, 2009 05:41AM kira wrote:
Bettye and Neece, you do want to wear a glove or gauntlet with a sleeve as the sleeve can push fluid up to the hand. Compression is tough, because it can help, but it can also trap fluid, cause "dents" that aren't helpful to lymph flow. So good fit and a good fitter are key.
Second you on hating this disease.
Dec 22, 2009 01:30PM Tina337 wrote:
May I make a comment on stretching? I've been seeing a myofascial therapist for a couple of months, and while he thinks stretching is great, he recommends not being too gung-ho. (Something we all are guilty of, esp. when there is tightness and you are trying to get relief!) Move gradually into a stretch until there is some tension and then rest there for 90 sec. Extreme, forced, and jarring stretching can actually make a problem worse. If you hold a position of slight tension, by the time you count to 90 you will notice the tightness has eased. This type of easy stretching is more likely to yield permanent results. I've had success with this type of stretching, and I have a lot of scar tissue around my chest and rib cage from reconstructive surgery (bilat mast, expansion and permanent implants). Holding your breath is often an indication you are forcing a stretch. An easy stretch will allow you to breathe and relax into the tension.
Dec 22, 2009 04:18PM BettyeE wrote:
I use an exercise ball to stretch. Lay across the ball on your back, stretch your arms out to the side. I worked up to holding each one of these for two minutes. You are so right easy does it. If it hurts back off.
Next I put both arms over my head.
Next childs pose using the ball to rest my hands on.
On your knees for all of these. Next both hands on the ball, roll the ball to the left until you feel a good stretch. Then roll to the right.
These are great
Dec 22, 2009 07:00PM kawee wrote:
Thank you everyone for all your input and information. You're all great!!! Just like the ladies on the September Rad group. I've learned alot, mainly -- easy does it. Not my normal. I usually stretch til I can't stand the pain any longer. I know better know.
Jan 2, 2010 07:15PM Neece wrote:
Just to respond to Kira's q my sleeve includes a glove. I think I will go see the therapist again while wearing it to show her and see if it is fitted correctly.
Thanks for the info.
I noticed that after my last chemo tx (10 days ago) while I was in bed for about 3 days after, my arm /hand swelling reduced and the tightness eased. Once I was up and about again it got worse! I just don't get it.
Jan 3, 2010 06:55AM , edited Jan 3, 2010 06:56AM by kira
Hands are tough. They're not simple cylinders like arms. It's hard to get compression on both the palm and top of the hand--I had a PT explain to me that when you compress, with "the Law of Laplace" the highest compression is on the sides. (Like wrapping a book with string--the highest pressure is on the binding and the page ends--not the front and back.) I don't fully understand it, but she always wanted to increase the circumference of my hand, with foam inserts when I wrapped to put the pressure on the front/back and not the sides.
If you're a physics wiz, maybe you could explain this to us:
I'm currently getting custom gloves, but in the past could use off the shelf ones (and I tried them again the other day, and they were okay.) Sometimes the glove will trap fluid high on my hand. And sometimes the custom glove, which goes down my arm, if used with a sleeve, will trap fluid in my wrist.
Compression is tough, and you're in active treatment which could cause all sorts of fluid shifts.
Maybe when you rested, the arms were up and able to drain spontaneously, and when you got up, you used them more.
There's a lot of belief that lymphedema is an inflammatory condition--and chemo and being ill can cause inflammation.
This is not in clinical practice, but I found this article by Stanley Rockson (LE researcher at Stanford) where he created acute post-surgical lymphedema in rats' tails and treated them with ketoprofen ( like ibuprofen or naproxen) and they improved. He just released this study. It's an FYI, another way to try and understand why we swell.
Last summer, my hand was tough to control, so sometimes, I just wore a gauze wrap on the hand while reading, driving in the car--and it was helpful.
Please let us know what your therapist says. And I hope you're feeling better.
Jan 3, 2010 05:50PM rosered wrote:
I have swelling in my hand which appeared about a week after air travel (and about three months after mast). I also had anxillary cording that was going away but then came back right around the swelling. I did where a sleeve during the flight and noticed just a little swelling in my hand. Then, about a week later, my hand and wrist began to swell more so I wore the sleeve - but like Kira said, it probably only kept the fluid in my hand. I was very anxious as I was having reconstructive surgery the following week and was afraid of what kind of swelling would occur. I went to a lymphedema therapist who drainage/massage and bandaged to get the swell down. She wanted me to get a custom glove that would go beyond my wrist instead of a sleeve/glove combo. Because I wanted to get something before my surgery, I ended up getting a glove that only goes to my wrist as I was told I would need "custom" for a longer glove. I like the glove, but it sometimes feels really too tight so I don't wear it all day long. I feel like the swelling comes and goes thru the day but its not awful but I'm interested in a better solution. Kira, what kind of custom glove will you be getting? When I talked to the fitter at the store that orders the compression garments, he acted like getting a custom glove was crazy. Grrr! Thanks in advance!
Jan 4, 2010 05:07AM kira wrote:
I'm waiting on the third custom Juzo glove--the first one made my thumb go numb, and the second two had short fingers--too short. The fitter did let me keep the first while I'm waiting.
I have a custom elvarex ordered by a fitter I don't use anymore--I like the Juzo better--works better and no latex.
I have used off the shelf medi95 gloves with good results: I tried Juzo off the shelf, and although they fit well, they didn't work on my fingers at the time. Off the shelf Jobst doesn't fit me well. The classic medi fabric is too stretchy for me, but the medi 95 (the cheapest model) works well. I'm between a 2 and 3, and find the size 3 works well.
Lymphedema is a moving target, and sometimes you need to switch the products you use.
Jan 5, 2010 12:47PM Kyta wrote:
Glad I happened upon this thread. I think I have AWS (cording) also. I had a mx and ALND on Dec 11th and have had this cording since. I've asked the surgeon and nurse about it a couple of times because it's painful and really bothering me. They just keep telling me to do the exercises (which I am) and to take pain meds (which don't seem to help), but now I'm thinking maybe I should go see a PT as it seems to be getting worse rather than better. I see the surgeon tomorrow and will ask if I should be referred.