Cording Pain

Hi Sallyellen, sorry you had to join this amazing group of people but glad you found a place to experience comfort and answers.

I cannot respond to your question as I have not had your experience but bumping here hoping someone with an answer/suggestion will be along either here on on the other thread where you posted.

{{ HUGS }}

Hi, I'm new to the forum and I want to ask a question about my wife. Both are doctors in Argentina but around here we do not have much information on the subject that we want to consult. She has "Cording Sindrom", but unlike as described by the books, the process began after nearly a year of sentinel node surgery. I can not find anywhere that the problem starts so late ... Someone can help us ?? Thank you. Daniel

DanielMusza-  I had cording about a year after surgery.  It went down my arm and was also in my

mastectomy scar, which was rather unusual.  The doctors thought it was scar tissue, but my Lymphedema

therapist thought it was cording.  Sure enough, she kept working on that area and my arm, and it got better!

I'm with Jen. PT didn't help with my cording but massage therapy did. It flares up occasionally for me, but massage usually gets rid of it. I had it from my underarm, down the biceps, forearm and into my fingers. It was pretty bad and was several months after surgery

I had double mastectomy February 24, 2016. Cording developed three weeks later and pain became much worse. Couldn't get an appointment with PT for 10 days and was VERY motivated to find relief sooner. Walked four doors down from my office to the massage therapist who specializes in Myofascial release and body work and described what was going on. She was able to give me immediate relief by manipulating and squeezing the cording. She didn't have prior experience with cording. She did some homework online. It was very easy to feel and it responded quickly which pleasantly surprised both of us. I think it responded so well because we started working on it the week it started. Cords were developing down my arm, across my chest, and down the trunk of my body. When they started they were accompanied with swelling and the swelling was slower to go down when they were present so it escalated before I got help. I have been to the PT for the first visit which was diagnostic in nature. She won't start working with me until Friday and she indicated she would be doing similar manipulation of the cords. I know I will ultimately need someone who has experience with lymphodema to avoid progression that direction. One of my arms is already 4cm larger that it was before surgery. I am highly motivated to do everything I can to avoid long-term issues with lymphodema. I would recommend everyone have a PT appointment set up before surgery to happen 3 weeks after surgery so you don't get caught with a 10+ day wait. If you don't need it, cancel it. I felt like the exercises I was doing were hitting a wall. I have had a frozen shoulder before and I knew this was different. It felt like somebody tied a cord inside my body. It is amazing how quickly it can be untied if it is squeezed for 30-40 seconds in the right place. The PT did tell me they can literally appear overnight. I slept wrong on my arm one night last week and woke up in misery. I am looking into the night wear sleeves if that happens frequently. Hope this helps. Glad the cording discussion got started. Hope you have found some relief Sallyellen.

btw, found a very informative article..... http://www.lymphnet.org/membersOnly/dl/reprint/Vol_25/Vol_25-N2_What_is_cording.pdf

canceredkitten, I have cording and had what they call "stage 0" Lymphedema. My surgeon also failed to know what to say to me when I went to her regarding the problem within the first week after surgery. She basically told me to stretch. I went to a Lymphedema specialist who did massages and had me do PT. Both helped. I also had a compression sleeve which I really did not wear often because it was very uncomfortable for me. Most of my lymphedema is gone now but I continue to have the cording. Stretching helps a lot, start early but start slow. If you over stretch, you can make it worse. So far I can only imagine that it *might* eventually go back to normal again, but if it doesn't I really wouldn't be surprised. It's a sucky after effect that even if the doctor knew about it, might not have changed things much.

I recently (I'm 14 months post surgery) started having a lot of pain in my breast/underarm area and I'm not sure if it's from overstretching or another problem.

Another Chicagoan here with intermittent cording and Stage 0 LE. I am moderately obese, and had 4 nodes out (2 sentinels+2 “hitchhikers,” all negative), so the LE was not as big a surprise as one would expect. But I had always heard “slim women get cording, zaftig ones get LE.” Baloney.

I was very lucky to have my pre-op teaching session with a surgical NP who was very up-to-date with the latest research on LE and therefore took it seriously. She told me that with an SNB the chance was as low as 2% and as high as 20%, that I would probably not get it but would be at lifelong risk. (One out of two...). She measured me for sleeve & gauntlet and advised that on any flight >4hrs I wear them to prevent swelling, but that all else I needed to do to prevent cording was not to start stretching too early and to avoid lifting anything heavier than 5-8 lbs. with that arm; and all I needed to do to prevent LE was to avoid constrictions, sunburn and breaks in the skin on my R hand & arm. I eventually learned that the only provable risk for getting LE was obesity. All those other precautions are essential to prevent infections & cellulitis, and exacerbation of LE.

I was fine until 2 weeks after radiation ended, when while reaching for something in the shower I felt a “catching” sore sensation in my inner R forearm, reproducible by stretching & rotating the arm. I couldn’t see or palpate any cords, but I could feel something was suddenly limiting my mobility (however mildly). I was concerned enough that I made an appt. with the LE specialist at my medical center...a month down the line (he’s very popular, a founder of LANA). I then felt a “popping” sensation and suddenly the “catching” was gone. A day later, a tiny bruise appeared at that very spot.

I managed to get through an entire Mediterranean cruise--long & short flights to Rome & from Barcelona--and shore excursions with no problem, except a slight feeling of “fullness” of my upper arm after a few hrs. at half a mile above sea level in Sicily near Mt. Etna--the fullness went away w/in a minute of the tour bus descending. (I was not wearing compression on sea & land--was not told I needed it except for long flights). I got home and saw the LE doc. He measured me and found no changes, and said he’d never have prescribed compression for someone with only 4 nodes removed. But because I described having cording & LE symptoms, he decided to stage me at 0 so Medicare would pay for my PT sessions. I lucked out and had a wonderful LANA-certified PT/OT who showed me the cord in my axilla and slowly and deliberately massaged it away. She showed me how to do MLD massage, and told me to wear compression not just on long flights but during any activities that would increase circulation to that arm: repetitive motions (sweeping, raking, chopping, scrubbing) strength activities (scooping hard ice cream & grating hard cheeses) & training, cardiovascular exercise, guitar-playing (I perform, and my arm drapes across the guitar in such a way as to constrict it slightly), and time at altitude. I found that even on a short (2.5-hr.) flight from London-Geneva I got some swelling--as well as during a rapid elevator ascent to the 95th fl. of a skyscraper--so I now wear compression during any flight longer than a short puddle-jumper, rapid ascents in elevators, and time in the mountains.

I find that if I forget to do my stretches, the axillary cord begins to re-form.

OTOH, a friend of mine had a BMX at a hospital in a different health system, down in the S.W. suburbs. Her surgeon and NP scoffed at my concern about how she could lower her LE risk. They said, “occasional short needle sticks are fine as long as there’s no long tourniquet time, and since we treat LE with compression, how could a blood pressure cuff cause or worsen it?” So not everyone is fully conversant with LE. Me, I wear a Medic-Alert bracelet with a pink caduceus emblem (pink was the LE doc’s advice, to alert EMTs to LE risk) that has the LE precautions along with my drug allergies and emergency contact on the back. I even managed to find one that takes Pandora charms.

tsoebbin, that was how my cording felt like. It started about 3 weeks after my bmx. My MO finally wrote a referral to a PT that specislized in breast cancer rehab. I went through PT during chemo and it felt great. She even helped me get rid of the bloating caused by all the chemo drugs. I felt little knots all the way up and down from my armpit to the wrist along my inner arm. It resolved after about 3 or 4 sessions. I am about 8 months out from my bmx and I no longer have any issues. Get to a good PT as soon as you can , they can definitely help.