Help with Cording

Emily12, I agree with MinusTwo, go to an LE trained PT. Mine has done wonderful things to significantly reduce the discomfort from the cording I have in my arms from my BMX. You might think that massage is just a “feel good” technique, but it is not. There is scientific research to back up why the massage helps cording issues. My PT told me that research done on mice has shown that massage has a statistically significant effect on scar tissue versus not doing the massage. (They can’t do the research on humans because it requires a cellular analysis after the treatment.)

I hope you can get some help and feel better soon

Emily I will echo what the previous posters said. Get with a certified lymphedema therapist to work those cords. I have battled cording issues for about two years and finally have gotten them resolved. The massage therapy can be painful at times though especially on your chest area. At least mine was but it took that amount of pressure and work to loosen the cords.

No - and most docs have very little knowledge about LE. Usually 15-30 minutes in 7-10 years of school. From NIH - here's a basic definition:

Lymphatic cording or axillary web syndrome (AWS) refers to a ropelike structure that develops mainly under the axilla but can extend to involve the medial aspect of the ipsilateral arm down to the antecubital fossa. It usually appears after axillary dissection and can develop after a patient's last surgical follow-up.

Emily - sorry you do have cording. But great that it is now properly diagnosed and you can get treatment.

ZillsNot4Me - I've been told to stay away from hot baths/hotsprings , so I'm thinking you should not use heat. I use a pump and wear compression sleeve/glove. I was doing self-massage, but got lazy after getting the pump. I need to get back to self-massage, I think it helps. I wish I had an answer for what you are experiencing. Even when my arm was badly swollen, I did not experience pain. Some people have posted about finding relief (from pain/discomfort/sleep) with CBD/CBD-THC. I tried both for sleep issues/anxiety, but it did not help.

Some people have posted about success with surgery for lymphedema. It is a new technique, and results seem mixed. I've been trying to find out if nutrition plays a role - are there things I should avoid or include? I think my LE is trying to get rid of me. She is always telling me how well I am managing it, and pushed appointments from 2x/month to 1x/2-3 months. I've been unable to self-measure, and find perception unreliable. Sometimes the affected arm looks smaller than the other (right after pumping), and other times it looks like a balloon, but it always feels the same.

Thanks RSBG. My arm would feel full or ache. This rib thing is new. I have a lot of scar tissue. Two drains removed in that location. Had to go to chest wall to get clear margins so concave. I think rads have increased scar tissue or decreased the elasticity. Sometimes it stings, sometimes it hurts.

I have a swell spot that just came in. Was told I could wear it under a Walmart shaper. The one I had no longer fits thanks to piqray. Lost 10 lbs. can’t get out to get a smaller one or a true compression tank because of possible exposure to Covid. Pumping doesn’t seem to make much difference. I agree heat and salt make it worse.

Zills I agree with you that someone else doing the lymphatic massage is more effective. We just cannot manipulate the tissues as well, no matter how much we try. I know I feel on cloud 9 after seeing my massage therapist. Although that expense is getting too high now so I am going to have to manage differently, maybe see her less. I am truly sorry you are having this issue and I do not understand why most insurance will not cover ongoing supportive massage therapy because I feel it is key to preventing the condition from worsening.

As far as garments, can you order something online at all to try instead of going out in person?

Lots of people are comfortable just getting a massage. I even found the name of one who supposedly understands breast cancer patients and maybe has some medical training. That would be just to pamper myself if my shoulders get tight, or my back gets kinked.

I would not use someone who is not trained or certified for lymphadema to address my LE. In fact, I probably would tell a "regular" massage therapist not to touch me there.

I wasn't quite sure where to post this....??? I developed cording after surgery. I am in physical therapy (non-lymphedema) - they will not work on the cording other than giving me exercises at home due to my healing issues. I've had a bad tennis elbow since June so that is what they're focusing on. The exercises helped a lot with cording - I nearly have my range of motion back. I will likely seek out the one lymphedema center out after more healing time. I've since realized the P.T. was correct in her concern (don't ask.... : ( )

My real question is whether or not one can develop cording vertical along the sternum. I have what feels like a cord there - been there for a bit now and it is uncomfortable. I don't always notice it. My other cords went from my upper chest area into both armpits and down my upper arms to my elbows. I can't see those anymore though know there is still some residual in my armpit area.....

Thanks for responding Rah! I truly appreciate that!! I really do believe that is a cord - and it's below my sternum more in my diaphragm area. I will have to wait some tho to contact the local lymphedema agency- doing just a little myofascial release (me) to the side of that area resulted in some bleeding - not bruising - not a lot a ... it will reabsorb in a few days or so - at least it did around weeks 4-6. I'm truly not healed enough yet which is a wake-up call to me... I am going to have to wait until my tissue heals a bit more or damage will occur. I'm hoping just another month or two. My BS is on medical leave until the end of the year and her office is 4 hours away. I did not do well with her P.A. and I don't think they could do anything about this anyways other than to tell me to leave it alone. I am a very slow healer due to other medical issues....

Thanks MinusTwo and again Rah! I did check out that website before and did not see any place in this area listed? There is a place in town though that lists certified lymphedema therapists. I've known someone else who went there before too for lymphedema for a different reason/medical issue. I will call today and check that out... Thanks!

Yikes! Thanks moth... I actually feel what seems like a cord on the surface (above where my diaphragm would be) which seems to be the cause of the discomfort. I can only feel it for a short distance. I will call the P.A. at my PCP's office. My PCP is new to me (only seen him twice) and he seemed fairly uncomfortable when I saw him a month or so after surgery - he didn't ask to look at anything or examine me when I expressed concern about my shoulder issues which I now know was from cording issues. The P.A. is a female ....

Also for Rah and MinusTwo - Wow! Just called the once local lymphedema place - closed down... not sure when that happened. Another place about 1/2 hour from here is no longer in business either. The only other two places I found on the stepup website were 1 1/2 and 1 3/4 hours away. I called the one in Camp Hill near Harrisburg - its an actual lymphatic massage center - sounds like a sole owner - left a message for her so hopefully hear back. There were a couple others listed though those were at inpatient rehab centers. Meanwhile I'll call my PCP's office to schedule with the P.A. I also see my OBGYN in less than 3 weeks....

Thanks to all three of you! I'll keep you posted...

Thanks Rah! The lymphedema therapist from Harrisburg called back-she was soooo nice and helpful. She had me try another place here in town I thought was inpatient rehab only. They have one o/p lymphedema therapist though they are closing end of December. That local lymphedema therapist called me back too - again she was sooooo nice. She agreed to see me while they are open. I meet with one of my PCP's P.A.'s this afternoon about the things I wrote yesterday. I will ask for a referral. The therapist in the Harrisburg area does not accept insurance either though is open to seeing me if I want or need that in the future. I don't think the local therapist will do any private work once the business closes.

I will check back in once I get more info.....