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Truncal Lymphedema - can it make ribs jut out/change shape?

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blah333
blah333 Member Posts: 68
edited March 2022 in Lymphedema

13-14 months ago I had mastectomy, no reconstruction, 2 nodes taken. I was 35. I had a slight bout of swelling 2.5 months (March) after surgery due to going on a long walk while wearing a backpack, but it resolved itself. It felt more like fluid.... 9 months after surgery (August) I was traveling and in a city getting ready for a long train ride so I carried some groceries and various things down several city blocks but was sure not to use my left arm/shoulder. Though at one point I did carry two bags using both hands. Swelling started in the area just beneath my armpit and would stay/fluctuate until the end of October. Because I only had DCIS and two nodes removed, nobody took/takes my issues seriously. I go to an educational hospital and the clinic is just newbie breast surgeons who barely know about cancer let alone lymphedema. The clinic was too busy and told me to "just go to urgent care" which I had already done because about 3 weeks after the start of swelling, I noticed that my top 3 ribs were jutting out, mostly on the center of my chest when the ribs really start to curve out from the sternum. I know not everyone is "symmetrical" but post-surgery, my rib shape/torso shape (not surgical results) was for all I could tell. Everything beneath the skin felt the same to me on both sides. When I feel the prophylactic side from my collar bone, I have soft muscle that slopes down to my ribs this is how it used to be on both sides. Now on left affected side I feel bone protruding, and could even see it through a shirt in a dressing room. The doctors don't notice or claim it's normal. I had an ultra sound done on Halloween and they saw no swelling/lymph fluid, although I have had a swollen node since March when they took US after my first bout of swelling.

I didn't get to see a PT until Jan 16th.... for swelling that took place in August-October. On that date I had no swelling so the PT was just being polite and showing me how to do lymph drainage but I didn't make a second appointment because it felt unnecessary or I guess I expected to magically remember everything I was shown. Jan 20, I was doing laundry and simply carrying a hamper from my car to the laundromat sparked another bout of swelling. Today I feel even more pressure on my ribs, and notice the overall shape of my ribcage on the left side is starting to look different. The 5th rib that angles more diagonally is more pronounced. I can look in the mirror and see my left side curves outward (it makes me think of a strawberry), whereas the opposite uneffected side is a fairly flat line if I run my hand from my armpit down the side of my torso.

I had to ask for another referral and my next PT appt isn't until March 12 (I am trying to move it).

Can lymphedema do this? It is like the swelling/pressure is on the inside vs. the outside of my body, although I do have some puffiness which sometimes feels like a squishy pad between my armpit and shoulderblade. I feel like I can also feel some of this on my back. It is making clothes feel a little uncomfortable although in the mirror I look the same "size."

I was also alarmed that I can feel another bone in my crotch area that I never felt before (noticed while leaning against a tall table at work), I think the pubic turbucle, which also seemed uneven (one sticking out more than another), perhaps my body has "tilted" due to swelling? I have also lost some weight, which may be why I'm feeling more things in my abdomen/lower areas but anyway I'm rambling.

But here is the thing......... because I have had a swollen node since the first imagery they did after my surgery (2-3 months after surgery) and it has not gone down in size at all, they wanted to do a biopsy. A doctor claimed there was cortical thickening and lack of a fatty hilum, but when I went to the Jan 7 biopsy, the US tech brought up my old images and said not much had actually changed, she just had provided more images. When they were doing the FNA, the hilum was visible. Unfortunately they fucked up and took samples of muscle so I have to do that all over again next week.

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SHORTER SUMMARY

Basically I've had intermittent swelling but am thin, my torso looks "normal" to other people and my arm is unaffected, I have a swollen lymph node so of course I have recurrence on my mind even though I only had DCIS, and I am even paranoid that these rib shifts and jutting out is some mets to bone or not all of it was removed.... though logically a reactionary node seems most plausible. They moved me up from a Birads 3 to 4a after comparing images from late October to my annual one in December... All of my swelling is linked to physical activity but it's pretty depressing if I can't even carry laundry myself? WTF. I work doing restoration of certain cultural objects and just using my UNEFFECTED side seems to exacerbate truncal swelling? What the hell. I am low income and already not inclined towards most lines of work. I go to an educational hospital and am on Obamacare so I can't just change where I go........

Sorry to vent but any advice/input is welcome.
Because of my age everyone I know is still running around having a great time with life. My mom also had DCIS but is fine and none of these issues. Most people seem to have arms effected... I am in shape, eat properly etc... I do all the things you're "supposed" to do (not drink, not smoke etc). I avoided repetitive activity for the most part but something so dumb like carrying one thing one time can make the rest of my life feel like shit.... then I look up chest wall cancer etc and terrible pictures and it's all very grim.


And yes, I know --- I will see a doctor I have an appointment in 2 weeks, in addition to the biopsy.



Comments

  • trishyla
    trishyla Member Posts: 698
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    Hi there, blah333. I have truncal lymphedema on both sides, but my right side is most affected. When I overdo things, like exercising or carrying heavy things, my lymphedema will recur, causing swelling, tightness and generally a squishiness. Can't think of a better way to describe it. I have reconstructed breasts, so that's where the fluid accumulates. I would imagine if I didn't have recon, the fluid would collect in my trunk below my armpits.

    So, it really does sound like truncal lymphedema to me. And you're right, few health care professionals even know what it is. It usually takes a good lymphedema specialist to diagnose you. If you can find one in your area it is worth seeing them, even if you have to pay out of pocket.

    The lymph drainage massage for truncal lymphedema is very different than for lymphedema in your arms. It's important to get it right or you can make it worse.

    There are a couple of threads here on Breastcancer.org that deal with lymphedema. I don't know how to link on this site, but if you do a search using the term lymphedema they should come up.

    I hope you can get a proper diagnosis.

    Warm wishes.

    Trish


  • vlnrph
    vlnrph Member Posts: 487
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    Good thing blah is so aware of her body and getting the unusual areas checked out. LE is a mystery to so many medical people, I hope she gets someone who will listen and provide appropriate follow-up.

    In the meantime, since carrying things like laundry seems to lead to problems, maybe using a rolling suitcase or cart would help avoid that phenomenon. That would not be a good solution right now if there is a lot of snowy slush on the ground but something to think about for the future...

    Also, be sure to read the StepUp-SpeakOut website for lots of excellent information!

  • minustwo
    minustwo Member Posts: 13,078
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    Yes - I have breast & truncal LE. Below is the link for StepUP-Speak Out

    https://www.stepup-speakout.org/

    There are a couple of good threads that discuss LE - like Grrrrr... and Let's share our exercise. Most docs don't have enough education to discuss LE - let alone recognize. According to one Stanford study, 15 minutes is all the lecture/discussion they receive during all the years of med school. Hope you can find a good, qualified, trained therapist.


  • trishyla
    trishyla Member Posts: 698
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    Thanks vlnrph and Minus Two for the stepup-speakout info. I need to check them out as well! Hope the OP checks back here. Lots of good info on resources.

    Trish


  • blah333
    blah333 Member Posts: 68
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    Thanks for the comments. I should have been more concise......... I know it is the beginnings of truncal lymphedema though it seems to come and go (though with long periods on) -- I need some help/massage. For now it seems to still be reversible. I haven't really been able to do anything to help myself yet... ANYWAY


    I mainly wondered does/can truncal lymphedema cause ribs to protrude or stick out more?
    Has lymphedema caused any of your ribs to jut out?

    I worry because of my upcoming biopsies and that this is more of an indication of recurrence than lymphedema....... although these rib juttings have been tied to swelling/activity. That part seems to be getting worse.

    Also - with lymphatic massage can ribs go back into place eventually? It is tight and uncomfortable and I am more bony instead of smooth on that side. The long term repercussions will not be good on my shoulder/back...




  • trishyla
    trishyla Member Posts: 698
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    I'm sorry I misunderstood what you were looking for. As far as causing your ribs to jut out, it sounds unlikely to me. I believe that the lymph system is between your ribs and your skin, not underneath. Mine manifests in the tissue under my arms, in my breasts and around my lower abdomen. I suppose, though you ribs could be displaced if the swelling was severe enough.

    I'm so sorry you have to deal with this. I know the wait for answers can be agonizing. I hope everything turns out well for you.

    Best wishes for a good outcome.

    Trish







  • blah333
    blah333 Member Posts: 68
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    I think the word I was looking for was subluxation.

    however it's been this way for some time (6 months). Hard to find any information on it or how I can get my ribs back "in place." Even during periods where I feel back to normal (no swelling) these bones remain popped out a bit. Not sure who can help me.

  • blah333
    blah333 Member Posts: 68
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    I also read about something called Costochondritis tonight..... it sounds somewhat like that, although my sternum is fine, maybe the costochondral junctions are the bumps that are jutting out (ribs 1-3). I wonder if lymphedema can spark Costochondritis?

    I don't have a lot of swelling (high fluid volume) and I don't think it's thickened and gone UNDER the ribs, I just think pressure on my torso might push things around too much? The size of my torso hasn't changed and I'm quite small (especially post mastectomy). The swelling might not be so alarming if my bones werent protruding and I didn't have a biopsy coming up.

  • couragement
    couragement Member Posts: 29
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    Reading your post with interest. I have wondered about costochrondritis as well. I had a double mastectomy with expanders back in Feb of 2017 and then replacement with implants in July of 2017. I had bilateral breast cancer and many nodes removed, but 22 on the right side. My entire right side looks different. About 3-4 ribs all jut out further on the right side and I have truncal LE there. It doesn't look obvious with a blouse on but with a t-shirt that is tighter you can see this area that curves out a few inches more than the other side. It is uncomfortable as well with that classic feeling of "carrying a football or roll of paper towels" under your arm pit. That is the way my PT described it and it fits to a "T". If I get too warm, work out too hard (or even carry a heavy purse on that side) the swelling feeling creeps up to my neck and down toward my waist. The inside of my arm gets sore and heavy. If I eat much sugar or a lot of baked items that entire area swells up. All my doctors say it is a results of all the tissue that was removed and the shifting of muscle and fat. I agree with them, it just looks odd and feels odd. The tumor board has met several times on my case given what a low percentage of women have bilateral breast cancer with multiple sub-types (plus an odd medical history) and exactly one half of them said not to do radiation because my right side would more than likely have such severe LE that it would become a disability severely affecting my QOL.

    I have a very large rib cage and can imagine if I were thin (I am about 20 pounds overweight) that it would be even more pronounced. Wishing you some relief and answers. Let us know how it is going.

    Sending hope and love!

  • couragement
    couragement Member Posts: 29
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    Interesting JO-5. It sure makes sense to me too that our bodies would end up a bit worse for wear given all that we have gone through. I am so sorry to see about your flap going necrotic. Aye! That must have been so scary. How are you doing now with all that? Have things healed? I know things have improved in mastectomy surgery a lot over the years, but the fact is that it is an amputation(s) and with that comes all sorts of difficult stuff. I have read doctor's papers and spoken to some that state if we were to call it an amputation vs mastectomy people would more readily understand that it is a big deal and that the body has to rearrange in many ways. The word mastectomy sanitizes all that we go through and makes others think it is no big deal and we are just back to normal. I have started to refer to it as amputation and it does help friends and family understand the magnitude of what has gone on in the body, although some people think it is being dramatic. They need educating.

  • blah333
    blah333 Member Posts: 68
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    I do not have a good mirror at home but got a better look at my ribs at work. I did not have reconstruction... I saw that my ribs do jut out right along where the there is that "junction" that connects the ribs to the breastbone/sternum. So it is plausible that I could have costochondritis. But now I wonder: can costochondritis cause lymph nodes to swell? Though I have had a swollen lymph node before this chest pain... Just trying to attribute these swollen nodes to something other than recurrence. I'd rather have costochondritis that is exacerbating mild LE than recurrence, LE and costochondritis... I just have to wait. I had a biopsy today. I guess that is taking my mind off of my swelling and my ribs.


    Regarding the other responses - if you had recon involving your back/flaps - of course that could shift your spine/ribs! I've also read that some women have had mastectomies can develop scoliosis.

  • luaubee
    luaubee Member Posts: 2
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    Wow, sorry this is all happening but so glad you posted and will be following. This could be my same story. Swelling and ribs feeling a bit out of place due to what I am pretty sure is truncal lymphedema.

    Dbl mastectomy due to DCIS no recon and not being taken seriously by my primary care at all after 24 months. Feels like there is a catchers mitt shoved into my rib cage on the side the surgeon took a very large lymph node!

  • luaubee
    luaubee Member Posts: 2
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    Wow, sorry this is all happening but so glad you posted and will be following. This could be my same story. Swelling and ribs feeling a bit out of place due to what I am pretty sure is truncal lymphedema.

    Dbl mastectomy due to DCIS no recon and not being taken seriously by my primary care at all after 24 months. Feels like there is a catchers mitt shoved into my rib cage on the side the surgeon took a very large lymph node!

    As I read this thread I see discussion of costochondritis and I too have wondered if that was also involved since I still sometimes get a bruised feeling over the sternum.

    The frustration of not being able to lift, carry of complete what were once easy normal tasks is madding, I really do understand and feel for you on that count .

    I do vintage and antique restoration and sales myself and have had to cut back to only handling smalls and even then it can be too much.

    Hope everything went well with your biopsie and you have informative results.

  • Suelee1
    Suelee1 Member Posts: 1
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    I find that compression garments can really help with lymphedema. If you can not get prescription garments I have found that Spanx or other "fashion compression" brands do help. In fact since they usually have less compression across the breasts they are more comfortable for me. There are some specific LE garments you can find online that also have sleeves so the compression will be in the underarm area too. Many cancer centers also have funds that may help with the cost of garments. I have found that I need to research and be my own advocate. My LE is not immediately noticeable now but I know it is there. The doctors are trying to save your life and overall are much less concerned with "mild" side effects. But if it isn't maintained it can be a major problem.

    I have been dealing with LE for 30 years since my right axilla nodes were removed for melanoma surgery. I am a medical miracle as I was not expected to survive. Given that the doctors would usually respond to my concerns about the swelling with some form of "but you are alive". Over the years the protocols for treating LE have changed dramatically. Originally they wanted me to refrain from picking up anything over 5 lbs and limit exercise on that side. Now they recommend as much exercise as I can do as long as I wear my compression garments. I had it pretty much under control until I was diagnosed with breast cancer in 2017. After two lumpectomies (margins weren't wide enough in the first) and exploratory surgery in the right axilla to see if any lymph nodes remained the LE flared up again. Of course the lack of real exercise during chemo and the radiation didn't help.

    Best of luck to you.

  • moderators
    moderators Posts: 7,913
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    Suelee1, thank you for chiming in with your inisight! We welcome you warmly to our community.


  • blah333
    blah333 Member Posts: 68
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    luaubee - wow, we do have a lot of similarities! My biopsy came back benign. But I still need to work on my light periodic/random swelling and my ribs. I think I finally realized what can be causing my ribs to jut out (or have chondrosis or whatever) - and that is wearing a shoulder bag purse across my body! I am very active and used to wear a backpack but now don't think I can (this caused my first swelling just after my surgery). So I started using a strapped purse that goes diagonally across my chest and doens't impinge upon my armpit area. I hadn't been riding a bicycle and wearing this bag for about 2 weeks and thought my ribs were looking better on the affected side. Then I rode again and just ONE day caused sensitivity and minor (not palpable to others or visible) swelling/rib tenderness. Sucks...... I have no way to carry things! I can't roll a cart around.. I do use a basket but it's not big enough. I don't ride as much as i used to because of this issue.


    Anyway even though I have benign results I have an appointment to be looked at and will ask about it, now that I finally have some words to describe my issues.


    I have another appt with PT next month. I need to learn how to do massage. I do not have compression garments but the PT did recommend putting on a sports bra to give some form of compression. My torso is so small now I looked at under armor's compression shirts and based on measurements I see online not much would fit me! luckily it still comes and goes. I need to make this not be permanent.

  • couragement
    couragement Member Posts: 29
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    Joanne, thanks so much for posting the photo and name of the product. This looks ideal. Much appreciated.

  • blah333
    blah333 Member Posts: 68
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    Bumping this post because I still have this problem..... and it's getting worse. I have 3 ribs jutting out on my left side at the junction just to the left of the sternum. Earlier this year I had to biopsy a lump on the front of my chest, I never got to read the report but was told on the phone it was "stromal" tissue. This worries me because I had PASH, but due to coronavirus I never got to go in to a follow up appointment and the IDIOT doctor on the phone even told me that it's "weird" I had swelling so long after my surgery (lymphedema symptoms started 8 months after my surgery)........ waste of time. In addition to those three ribs, my 5th or 6th rib juts out as well (one of the more diagonal ones)..

    So I've had
    - 3 rib junctions jutting out for almost 2 years (will be 2 years on labor day,
    - Rib 5 or 6 more on my side has been jutted out or "prominent" for about 1.5 years
    - the growth on my chest which shrunk after biopsy is now it's original size and sits in between my two different rib issues

    So I have 5 pressure points on my chest..... I cannot fall asleep on my back, it hurts to simply lay in bed reading a book. I now I have to sleep at a diagonal angle with a blanket propping me up. I'm exhausted a lot of the time.

    In addition, I started having swelling in my elbow/forearm area, I forget when this started but saw a PT in January. It always takes a long time to get an appointment. By the time I went in he measured my elbow and said it was not any bigger than before, so dismissed my issue. I have had some skin changes on that elbow, it would periodically feel substantially rougher than my other elbow, almost like stubble - but stubble that is made of my own skin. Now it's like that all the time. I try to put kinesio tape on it but ran out. I just read about how lympedema can alter skin last night....

    Doctors don't listen to me or have any useful information. I'm on medicaid and have so little money I cannot afford to see someone out of network out of pocket. I wanted to see a chiropractor but they say it's not covered by my insurance (though I go to a giant medical campus and they have them there). It's stupid because I would not need to see a chiropractor if I did not have this surgery. Because it's over 2 years since my surgery they told me I don't even need to go to the breast clinic anymore. OK.... now who will help me? Primary care is abysmal where I go, they certainly aren't used to seeing mastectomied chests. The breast clinic had like 1/5 good doctors.... now I'm on my own. I don't have an oncologist either.

    Every 6 months something on my chest gets worse..... I feel like a cripple. I'm only 37. This is starting to make me want to die. In addition I've had swollen nodes in my armpit this whole time. The displaced ribs occasionally cause me a sharper pain - what I believe to be lymph node pain. I worry all this activity is just going to result in one day me being stage 4, despite me trying to get help this whole time.

    They did a CT scan in Feb when I first went in with the bump - it came back saying I have a "bone island" on one of my ribs. But again, the doctor who followed up with me was a breast fellow resident who didn't even know basic info about lympedema so I did not get additional info ie what rib is it on? How do we know that is not cancer? I now hate doctors..... I need to call in and follow up but I am getting SO ANGRY about this. I hate calling this clinic. Corona virus is making it worse - I am less busy so am not distracted by how awful I feel. Then again, my activity is lower so my body should be able to rest vs. be getting worse! It is demoralizing, I can't even take a walk properly with a TINY light purse to hold my phone, wallet, hand sanitizer - doing so hurts my back.

    This is also very alienating. Someone I was dating asked why I wear a sports bra in in a tone I didn't appreciate - I had to explain why. People are so clueless. Everyone thinks my life went back to normal.... I wish I knew how much this was going to jack me up. Wearing a sports bra helps limit swelling in my trunk, but because of the rib issues it's increasingly uncomfortable to wear (pressure)

    I tried searching the forums and most of the only other posts about this were mine.

    What's even worse, a few doctors have tried to dismiss my issue because I'm "skinny." I do have a small torso but my bones were never jutted out of place. My chest was quite smooth after my surgery and my rib cage was symmetrical. Now it's not. Male doctors never make weird comments about weight, only women. That or they say "maybe it was always like that" NO YOU FUCKING IDIOT I KNOW MY OWN BODY... I feel like I have nowhere to turn. The only progress I've made is learning the word costochondritis. Which seems to have no remedy. I used to take epsom salts with peppermint which was soothing, or use castor oil - but now rubbing things onto my chest is unappealing because I hate feeling the rib bumps. I don't even look in the mirror anymore though I was originally content with my flat chest and was surprised I even looked good/hot as a breastless woman.... I never wouldve expected I'd have problems across my whole chest now - from the junction to where it swells on my back/armpit. That whole quadrant of my body feels crippled.

    Is it possible mild swelling jacks up my body as if it was a later stage? I hate the fact I'm going to have to wait until I have permanent lymphedema and my issues are perceptible to doctors to get help. My arms are also very small/veiny maybe lymphatic fluid has less places to go on my body so it's wreaking havoc against the ribs?

    I need to do more stretches but I admit physical therapy is tiresome to me. I'd rather ride a bike 20 miles or walk 10 miles... I also resent having to do basic work just to make my body function like it used to. This is also cosmetically making my chest look worse. I felt fine having a flat chest for the most part - my left side was done perfectly by a surgeon. But the bones pointing out ruin it.. it's enough to be cosmetically degraded but also have loss of function. Fatigue makes it all more insurmountable. I have been a severely low income person since the last recession and see how that affects my access to care. Imaging/surgery/testing is ok but physical therapy has been awful. I know women with means still have the same problem. But with corona virus and high unemployment I feel like I'm never going to turn a corner on that either.

    I've been meaning to get back to researching what I can do but dreaded combing through the forums so this is one long RANT.... I've also been isolated due to coronavirus. A romance crumbled lol. Friends don't want to hear about it. My mom who had breast cancer doesn't sympathize. She had two nodes removed, is fine, even kayaking etc. All she says is "keep following up. see someone else." Any comments welcome.......

  • flashlight
    flashlight Member Posts: 311
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    Hi, I just saw this post. I was diagnosed with Costochondritis when I was in my late 30's. As far as I know it does not cause your lymph nodes to swell. I had to get cortisone shots to relieve the discomfort and swelling. It is a form of arthritis. Then I went into remission and it didn't bother me again until I had radiation. One sign of LE is that your chest always has that heavy feeling. I just started PT/OT and was told I have LE congestion and muscle tightness from the radiation. There is fluid in my upper back. Good luck to you.

  • blah333
    blah333 Member Posts: 68
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    I'm bumping this thread.... I still have issues with swelling and no proper access to physical therapy and continued experiences with idiotic doctors. My economic situation has not changed so I'm still on Medicaid.

    The only "progress" I've made is that I've realized my rib junctions jutting out were probably caused by wearing a sports bra (the only kind of compression I had). I started wearing one about a month after my surgery (even prior to any lymphedema). I forget when I stopped. It was only when I was looking up some rib related things on reddit that I came across some trans post of someone who was binding their chest and they mentioned it messed up their ribs. (I am not trans, just found the information applicable to probably what occurred with me)

    It's depressing I either have to choose between swelling or having negative effects on my ribs. Some of the ribs jutting out did go down in the past year or so of not wearing a sports bra. But now even more basic activities like driving, walking, laying in bed can cause lymphedema. It's depressing and makes me hate my life.

  • hawkeye
    hawkeye Member Posts: 34
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    I have been struggling with a lymph issue myself. Even though I had no nodes removed I have intermittent swelling above my collarbone close to my neck, swelling in the armpit and trunk. I have described it to the oncologist who refers me to the PT dept within the cancer center. And while they are sympathetic and measure my arm and trunk and take notes seem to be unable to help. The oncologist even ordered an MRI which thankfully showed no new cancer. I daily, and some days more than once, perform self lymph massage. I started seeing a chiropractor who very carefully moves some joints. And then I found a physical therapist who practices independently who has been a game changer. For myself it was the cording of the lymph pathways that made trouble. Cording prevented movement of free moving lymph. And when it backs up or gets stuck it wasn't able to prevent inflammation. And the inflammation kinda stuck around and caused other issues in my ribs, my cervical spine. I'm not an expert and my description of it all would undoubtedly make an expert roll their eyes but I know my body. Ha. It's been years and years of searching on my part and years and years of experiencing mind numbing symptoms that made me think of it differently and outside the box. For me it's all about movement and opening up the pathways of lymph. Even from farther away places on the body than the site that swells or causes pain. I probably didn't add to the discussion, did I? Merely wanted to tell you you are not alone and to not give up. You are NOT crazy. This is happening to you. Don't give up.

  • rah2464
    rah2464 Member Posts: 1,192
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    Hawkeye your post absolutely helps because you are reinforcing the fact that we know our bodies better than anyone else and we have to rely on our self assessment to push for treatment. Glad you found a physical therapist that understood the impact of cording. I have been working with a wonderful lady for over three years now and I am still learning how my lymphatic system has been impacted.