GRRRRRRRRR I HATE LE..........
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I recognize a few names here, this is my first post on this thread. I have fairly bad cording which was just worked on this past week be a LE specialist. Thank you for the link on axillary web syndrome, that was the most informative article i have seen on it so far. She broke up a bunch of my cords and my range of motion is much better and my pain is almost gone.
But side then either because of the treatment or because I am concentrating on it I have noticed that the skin on my affected arm has a different texture and tonight when I wore a fairly snug jacket I had lines imprinted on my forearm from the clothes that were not present on the other arm. I am unfortunately fairly sure that I am getting the beginning signs of lymphedema. Did anyone's LE start this way? My arm is not measurably different in size yet but I very much fear this is just the beginning.
I hate this. I hate this with all my heart. This disturbs me more than the mangled breast and losing my hair. I am just starting radiation too so there will be even more damage going on to my axillary nodes since I am getting radiation treatment there. I know the this is all to save my life but goddamn I hate this.0 -
Awwww...JP --maybe I should type arrghhhhh instead--because this sure does have the sound of LE. And you are not alone in the hate relationhip with it! You found the AWS article, so I'm pretty sure you've been on stepup-speakout.org, so please do spend some more time there, because it's an amazing and above all accurate source of information on all things lymphedema.
Take heart - or consolation - that figuring this out early, and getting to a qualified LE therapist early, gives you the very best shot at keeping your LE from worsening, and better yet, making it better. I figured mine out early, too, thanks in no small part to Binney4, who gave me some straight talk when I wanted to be in denial. She helped motivate me for an evaluation and then I got diagnosed and my treatment has been very simple, and I've been able to keep things to no-visible-swelling almost all the time.
You will hear from more of our very powerful support team here tomorrow, no doubt! It's a blow, and everyone here feels that way, so you'll get lots of perspectives on coping, and on making sure you get the best help you can, as fast as you can.
Hang in there. Anger and frustration are lymphedema's middle names, but you will work through it.
Big, huge hugs coming your way-just not landing anywhere that you're hurting!
Carol
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JP, Your awareness of your arm, and the indents do suggest that there's some swelling--have you told your LE therapist about it?
It is not unusual for many if not most women to say that LE is harder than dealing with cancer. There are so many factors involved--the general ignorance, the chronicity, the limitations, etc.
But, early diagnosis leads to the very best possible outcome, and things may be flaring as you were in the inflammatory stage of AWS, but with good care and a game plan, you'll minimize it.
From your description, you are early in the LE stages: stage zero or one.
I wrote the axillary web page on SUSO--thanks for kind words--there was no information out there when I developed it.....Just odds and ends.
On SUSO, there is a page about emotional coping, and you might want to look at it.
You are still in the midst of active treatment, and I used to work in a rad onc office, and I saw a lot of women flare up initially and then settle down. Awareness is key, and you are aware. The subtle changes in skin texture are very common in LE: lighter color, more firm, loss of boney prominences.
It sounds like you have a good LE therapist relationship already established. One note of caution: Jodi Winicour PT always says not to try and pop the cords, but if they do break with standard therapy that's okay.
How can we help?
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I have an appt with my therapist to show her my cording, not sure her experience with it but guess I will find out. Sat and Sun I went swimming and worked out at the gym, It does help I think but arm was very sore Sat night when I tried to go to bed. I had been told to drap my arm down the side of my bed, that was hard to do and not seemed to help. Sun did not do that but the cord is showing more this morning so maybe it was the right thing.
new shit to learn!
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Thank you for your words of support. I am just in the disappointment and am obsessed with checking my arm and angry that this is happening to me. I only had five nodes out of my axilla and I am youngish athletic and was hoping to escape this. Then again this year has been full of disappointments. I will look at the coping page, i hadnt gotten there yet. I just don't even know where to begin. Other than just to do what I need to do to control and prevent it just like I am with breast cancer itself. What damn choice do i have? Kira that page was really fantastic. Thank you for doing all that research and putting that out there.
NOT break the cords, man, too late there. The therapist was the one that broke them. Like 10 or more of them in my forearm. And that is when I started noticing the skin changes mostly in the forearm. It was worse this morning too when I woke up. Wish I had just left them alone now. It did help my pain and range of motion immensely but I would rather have the pain than the edema.
I am going to get my sleeve after my radiation treatment this morning. Shit.0 -
When do you all wear your sleeves? All the time? Just during exercise? This is all so confusing and stressful.
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JP I so hear you.. You are in a good place to get help and getting pointed in the right direction... I find the ladies here are very understanding and make each day a little better for me... I just found out in June that the pain and swelling I went through for a year, was LE in the trunk.. I am glad you found this topic BEFORE it went that far... You will get through this frustrating time... step by step... don't forget to breathe!
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Jp--wearing the sleeve--and you should get hand compression with it--you do NOT want to push fluid up into the hand: this is from the Lymphadiva site, written by Andrea Cheville MD of Mayo Clinic (they just changed their site and I had a hard time finding it)
https://www.lymphedivas.com/comprehensivecompression.asp
Hand compression, if there is no finger swelling or hand swelling, can be a much less expensive gauntlet--rather than a glove. But any swelling in the hand, get a glove.
As to when to wear the sleeve: when you need to--if you have swelling, consider for exercise, heavy lifting.
Also, poorly fitting compression can trap fluid, and often you need to "ease" into compression--wear it for a short while and then see how your arm is reacting
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm
This is a steep learning curve of information you NEVER wanted to have to know, and it plain stinks. Or worse. It does, however, get better and you will get on top of this.
We all have a million questions, and it opens up a whole level of uncertainty and hassle, at the very least.
Keep asking.
Kira
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Thanks for the tips, I will read that in detail when my kids let me... Gotta educate. Yeah, quite a learning curve. I got measured for my sleeve and they are getting me a gauntlet too. They didn't have my size so will have to pick it up on Wednesday or Thursday. At least it was free, i have gone way over my out of pocket deductables for this year. I see that most of you have had surprisingly few nodes removed too. Seems like it doesnt really take much huh. Not sure if I am going to wear it with exercise yet, guess I just want to see if the pitting changes much with certain activities. It doesn't seem to yet but I guess I shouldn't let it get too much worse.
Gonna go do my self MLD (and my breathing:).0 -
Jp, pitting edema does very well with elevation. Hard with three children, but if you could raise your arm up on pillows,both at rest during the day,and at night,and hydrate like crazy,and take deep breaths a whenever you can remember, it could help the swelling go down.
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More for JP: Yep a number of us "just" had SNB, and still got LE, totally sucks. Here is a page from SUSO on what to do while waiting a a poster that shows some of the steps.
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting
What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist
DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;
2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;
4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;
6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;
8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.
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I HATE that I'm not supposed to treat it on my own. I HATE being dependent on yet another medical professional. Why can't we learn to treat it on our own? Sigh.....just registering my protest, so to speak.
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JP, you can manage this thing. I asked this guy who was diagnosed with diabetes at 18, how do you cope with a chronic illness? He said, "You manage it, or it manages you." He's right, too. I'm going to keep on top of this LE, I'm going to wear my sleeve, and if you get the right one, they're actually pretty comfortable. I'm going to do my MLD, which I for one like. I'm not going to let this beat me, "Oh me oh my, my arm is swollen."
You can do this!
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Ok, question everybody.
What is your relationship with your LET after your out of intensive treatment and into self-management?
I said goodbye to my LET, and thanked her for all she's done for me. I simply ran out of appointments, work got busy, bandaging was a disaster so I didn't want to go there. So far, garments and MLD is working, no drama for a week now. I'm going to miss her, she took care of me when I had absolutely no one else in the world.
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Actually, unless we have a LE therapist who lives with us , the vast majority of the treatment of LE is self care. Think about the time spent with a LE therapist vs. your life--not a large percentage of time with the therapist?
I agree, LE makes us dependent on finding a good therapist and a reasonable physician to prescribe for us and both can be problematic.
So, you ARE supposed to treat it on your own, you just need the "toolbox" of therapies so you can do it, and that's the learning curve.
Look, it sure does stink, but as JoAnn Rovig says in her videos, which are a great resource: "When we successfully manage our LE, we get our power back" (I paraphrased somewhat.)
These SELF CARE videos are very useful, IMO
http://www.nwlymphedemacenter.org/
I have the tools: I know how to wrap, I have the garments, I can do MLD--so I can keep my LE in check. Yeah, I do have to deal with it on a daily basis, and it was impossibly hard at the start, but now, it's just kind of routine. Not a routine I ever wanted, but one I can handle.
My not supportive breast surgeon said "it's like diabetes, a chronic condition" and she used that as an excuse for why it wasn't her problem, but it is like diabetes--you learn a lot, and then you manage it. And sometimes beat it into submission. But you do need the tools to manage it.
And like any chronic disease, we poop out on self care at times.
I'm not saying to "buck up", because LE sucks, and protest away, just that treating it on your own is the goal.
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Nibbana, my LE therapist is a LMT and I pay her out of pocket and see her twice a month for MLD. Technically, I'd be okay if I didn't see her so often, but I adore her, and my husband gets a massage on a regular basis, so I justify it.
I leaned on her so hard at the beginning, and she let me call her at home...I don't do that anymore, but I sure did for a while.(Now that I took the LE therapist course, I ran into her at a lecture, and was shocked and thrilled, and so unprofessional--just screamed out her name.)
Many LE therapists don't recognize that we need to check back in, but every 6 months is ideal, unless there are problems. In 6 months, you get measured, check out your garments and get refresher course on MLD.
Kira
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You can.....You just have to be diligent about LE.......I have been on my own for over a year with this.....Liz
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Today was a no doctor day - even if I'm hurting it felt good not to have to put up with yet another doctor - I do have LE therapy tomorrow and my PCP on thursday. I Want to go down the mountain to town but not for that reason.... When will it stop... all these docs that want to see me every 6 weeks... 3 months etc. It ends up I see at least one a week .. 0
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I have a question that I'm hoping some of you can advise me. I have been diagnosed with mild LE in my arm and hand as well as my trunk. It is worse in my trunk. I also have reflex sympathetic dystrophy, axillary web syndrome, and ulnar nerve impingement, which causes me constant pain, as a result of my axillary node dissection. I had 13 total nodes removed. I have been given only one option to fix it, after enduring much PT and the PT trying to break up the AWS without success, that option being surgery to my axillary area to remove scar tissue. I'm terrified of that option as I don't want to risk irreversible LE. So my question is, if you had to live with daily pain, or risk surgery and possibly LE or worse damage to your already damaged arm, what would you do? How great is the risk of LE, having surgery to the axillary area? My PT wants me to see a surgeon, but I'm very resistant to the idea. Advice is welcome.
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Rocket: Unfortunately, you are the one who has to weight the risk and make the choices.. but I hope Binney and Kira might be able to advise... As far as I go, I have truncal LE and upper arm swelling... A long time ago I had ulnar nerve impingement and had an ulnar nerve transfer.. The sports surgeon moved the nerve to the inside of my arm.. Unfortunately, now with LE, that is the first place the fluid pools in my arm - If I see it, I do a little self MLD and put my sleeve on.. I had a lumpectomy 6 weeks ago, which was scar tissue in my breast, and the swelling in the trunk got worse but my LE therapist and I have started working on it and it is going back down... Any surgery has the risk of causing the LE to flare.. but what I had to realize is that once you have it, It is with you for life... I can control it with diligent work but unfortunately, no matter what I do, it is still there... I cried for a couple of weeks when I came to that realization... But remember, it can be controlled, especially if you have a mild case, you aren't always swollen and achey..
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Rocket--what kind of surgery is the PT advising? We had a woman--Outfield--who had a large pseudocord--a huge scar, that normally only occurs with mastectomies and she had surgery to break it, and it worked well. I bumped it: it's "A different kind of cord problem"
Reflex sympathetic dystrophy is an over-reactive nervous system that has responded to an injury with chronic pain and skin changes, so I'd be very, very cautious about re-traumatizing the area.
I also believe that Tina had some scar tissue removal when Dr. Massey did her reconstruction.
There's never only one option: I'd get some opinions, and AWS can take a while to resolve, and breaking the cords is not suggested as ideal treatment, as they're thrombosed lymphatics and some will get back to work.
Some women, Tina in particular, had a lot of myofascial work done by a PT to work out scar issues, with good results.
This is very important, so I'd get a number of opinions and possibly seek an opinion of another PT
I'm going to link you to an AWS page on SUSO, and try and bump Outfield's thread:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Long term pain is debiliating, and there is a new thread, just for pain, because post mastectomy pain syndrome is common.
Kira
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Rocket ~
I'm sorry to hear you are in the same boat as me. I have been on this discussion board for about a year, and your case is more similar to mine than others. Particularly, the refreactory AWS. I have had surgery, and a long story about this all. It has been a nightmare for me. I was told about risks of LE from ALND, but nothing about AWS. These doctors are clueless between local docs and those that did my surgery at Mayo!
I am actually on my way out door to see my PT-CLT for a session. If you would like to email me my address is: rodgersce@sbcglobal.net or call me at 317-965-2991. I can tell you more about my timeline with this, attempts to resolve it, and what is up next for me. I am the one who wondered about surgery after my first PT said they didn't know what else to do. Then when I decided to find a surgeon . . . well good luck! I thought I was going to the best at Johns Hopkins and he really didn't know what to do with me.
Please keep in touch and warm wishes and hope for AWS.
Cheri
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Thanks Kira! The PT stated that the surgery would involve removing scar tissue and the cording. I did have a lot of OT previously, and she worked hard to break the cords. Some broke, but others have remained and never resolved. I am almost three years from my dx of BC. Pain is debilitating, but if it were to become worse after surgery, I don't think I could handle it.
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My arm is soooooo bad today...my left arm where all the nodes were taken out. It hurts so bad and feels like it weighs a million pounds. Gonna do some MLD and lay in bed with the arm up for the afternoon and hope it resolves. have I mentioned lately the I HATE LE ( this is me shouting)
Maggie
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Sounds like a GRRRRRRRRRRR Party is in order!
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GRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!
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Rocket -- SUSO has a link to a paper by Elisabeth Josenhans a PT who has had success in stretching and releasing the cords of AWS.
http://www.stepup-speakout.org/elisabethaws.pdf
Maybe you could find a different PT who could use some of her techniques rather than trying to "break" the cords. I agree with Kira if you have RSD you should consider very carefully whether surgery will help or make it worse.
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Aw, Rocket, what a stinkin' decision to have to make!
I'd sure look around for other options and opinions. At least don't be in a hurry about it. Sometimes just giving it time makes a decision clearer and helps you listen to your body--or your gut, or whatever it is that convinces us we actually do know the answer after all. In the meantime--hugs, and prayers for clarity and peace going forward. Not to mention for some real answers and a fix!
Be well!
Binney0 -
Yeah I'm thinking strongly against surgery. The PT however is against trying to break up any more AWS as she feels it would inflame things even more. I don't understand why she thinks surgery wouldn't inflame things, especially RSD.
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Rocket.....It is TRUE....take your time in making your decision.....all of this is you show and belongs to YOU......you can get so much information...but in the end....your body has the clue and listen to your emotions.....feeling are neither right or wrong....they just are....Liz
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