Axillary web syndrome/cording

gin51
gin51 Member Posts: 1
edited June 2014 in Lymphedema

I developed painful , axillary web/cording about 2 weeks post op, modified radical mastectomy.  It is a painful "cord" which started inner elbow to armpit and about the thickness of my little finger.   After researching, I self diagnosed it from watching a you tube video.  PT confirmed it and switched exercises with absolutely no relief, only more pain. I was told it will resolve in about 3 months.  I was not willing to put up with limited motion and pain for that long.

I have since stopped PT and am going to an Occupational Therapist   (they work from the waist up) who is  certified in oncology rehab.   She is also a  "STAR" Survivorship Training and  Rehab,  clinician certified.       She has helped me more in 4 sessions than 2 weeks of PT.    

gin51

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2013

    Gin, here is a reference page on AWS:

    http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

    Cording is very, very common, and it is a risk factor for LE, but just a risk factor.

    I am STAR certified, and personally, I found the course to be overpriced (my tuition was covered by a grant) and the lack of a reference text was a significant drawback. It consists of 13 or so on-line chapters with pre and post tests. Some of the information is inaccurate, especially the lymphedema chapter. But, it raises awareness. When you're done, you get a certificate, but no reference texts or ability to use the fatigue scales or access the articles that were referenced. I'm not a big fan of the MD who sells the course: Julie Silver MD--I wish she'd put up accurate information and provide those of us who took the course with a reference that we could use as we work with patients. Here's the site: http://www.oncologyrehabpartners.com/ 

    And Julie Silver is working overtime to promote her course and certification, but doesn't do much work with patients....She also runs expensive courses on how to get published: she published two books about her cancer and rehab experience. Too bad she puts more energy into promotion over accurate content and a course that translated into better quality care. I just found it raised awareness of long term side effects. For those who may not have known.

    That little rant aside, I'm really glad your OT is helping you. I saw a number of PTs and one OT, and didn't get full relief until I went to a massage therapist for myofascial work--this is nearly 5 years out. At the start, the last PT, who was also a LMT, did a good job.

    And they did get a whole lot better just with time. But some cords lingered.

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  • carol57
    carol57 Member Posts: 3,567
    edited February 2013

    I have a feeling that what matters is not PT vs OT vs LMT, but the therapist's personal interest and willingness to invest both time and money to learn about these BC side effects and how to treat them. There are quickie courses and there are more substantial courses of continuing education, and unfortunately, unless we get out our clipboards and put a prospective therapist through a very pointed interview, we're often not going to know in advance which variety a therapist pursued. And like any profession, some are simply more talented than others, or care more.  Gin, sounds like you found a great therapist on your second try, and Kira you eventually found a good one, too. It's criminal that finding the right therapist is often such a trial-and-error process.

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  • Outfield
    Outfield Member Posts: 1,109
    edited February 2013

    Gin, I have a lot of personal connections in the rehab field because my partner (and therefore a lot of my friends) are PT's who work alongside OT's.  Both (OT and PT) are fields in which the initial training doesn't give you enough info to treat lymphedema, axillary webbing, or really a lot of other conditions.  The schooling to become a PT or OT does give a person an overview, and teaches them how to further their education.  What the therapist does with the degree after graduating depends on personal interest.  There are a ton of specialized certifications like STAR.  Believe me, there are other conditions as poorly medically recognized as ours.  It's not all orthopedic surgery recovery.  

    So a PT doesn't equal a PT, and an OT doesn't equal an OT, and they don't equal each other.  That's the super-frustrating thing when insurance sees them all the same.

    Your cord actually sounds unusual in how big it was.  I'm glad for you it has improved.  

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2013

    Outfield, excellent observation.

    Unfortunately, there are some nasty "politics" involved: the APTA has the firm stance that all/any PT can treat LE, yet studies show that they receive little training even if they have advanced degrees.

    I've spoken to PT's who tell me that their CLT training and LANA are not on their formal national certificates, as the APTA doesn't recognize them.

    I took a full CLT course by Klose last summer, and there were PT's, OT's, OTA's and LMT's in the class and working on each other, it was obvious that skill and expertise varied. I tended to work with a PT who had been "volunteered" by her hospital, and didn't want to learn LE, but she was a true professional and took the course very seriously and did a super job. Another woman, an OT, just clearly never "got it". And, whenever possible, I tried to snag an LMT...The woman who brought Klose to our state is a very experienced LE PT, but she'd only done weekend courses before. I got to work with her once, and she's great.

    STAR is nonsense, IMO. It's on-line and inaccurate.

    I know PT's who've done pelvic floor rehab training--and the APTA recognizes that, but I sure wish they'd change their stance and admit that further training is needed for PT's to treat LE. (Nicole Stout, a serious researcher in LE is on the board of the APTA, hopefully she's making the case from within....)

    Off the soap box

    Gin, you had a large cord and I'm glad you found a good therapist.

    I just with that politics, turf battles and a certain rehab MD who sells a course of dubious value, and touts her two books in expensive Harvard Medical School classes on "how to get published" would quit their behavior because it interferes with our ability to get good care.

    On SUSO we have access to videos that demonstrate a method of manipulating cords, developed by Elisabeth Josenhans of Germany, and we limit access to trained therapists, as we don't want people to inadvertantly injure themselves, and I get requests from all over the globe.

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