Above Photo Permission of Roger E. Moe, M.D.

A Patient's Story

My story of axillary web syndrome: Ten days after my lumpectomy and sentinel node biopsy, I noticed that my arm hurt. It felt like there were tight cords in my arm, and they hurt and tightened up, and I couldn't reach my arm out without pain that ran all the way down to my hand. It hurt to hold a pen in my hand. I looked in the mirror, with my arms pulled away from my body and saw a cord-a raised ropey area-in my armpit.

I was being treated in a lymphedema clinic staffed my massage therapists, and although I didn't have lymphedema, it was the pain that caused me to ask for the referral. Unfortunately, they didn't know how to treat axillary web syndrome, and the supervisor had never heard of it.

I found a Physical Therapist who was familiar with Cording and Axillary Web Syndrome, and she agreed that I had multiple cords that started in my arm pit (where I had a seroma) and traveled down my arm, crossed over my elbow and ended at my thumb, although I could feel them in my palm. She taught me some stretches and did some scar massage. I was in the acute inflammatory phase.

I read the medical literature and talked to my surgeon and they all told me it would go away on its own, and there was no risk of lymphedema.

But, I was bitten by an insect, right in the area of my arm where the cords ran, and my hand swelled up the next day, and that localized swelling below my thumb and into my index finger has never resolved.

I did my stretches and the webs stopped forming, and in about two months, they were soft. But, if I put traction on my sentinel node biopsy scar, two webs would pop up, and if I was too physically active, the elbow webs would come out again.

The webs felt like piano wires.

Finally, 6 months after surgery, I re-contacted the initial physical therapist and was referred to a specialist Physical Therapist who had extensive training in lymphedema and axillary web syndrome, cording, and we've been working on releasing the webs ever since.
 

 

Here is a picture of my arm, 6 months after surgery, when my axillary web syndrome was supposed to have resolved.

 

 

 

 

Below a picture of cord extending past the elbow to the lower arm:

Photo permission of Elisabeth Josenhans, Physiotherapist Kunhardtstr 4 20249 Hamburg Tel. +49(0)40/4802703.

Below a picture of Axillary web syndrome in arm

Photo permission of Elisabeth Josenhans, Physiotherapist Kunhardtstr 4 20249 Hamburg Tel. +49(0)40/4802703

Below a picture of Axillary web syndrome in Axilla

Photo permission of Elisabeth Josenhans, Physiotherapist Kunhardtstr 4 20249 Hamburg Tel. +49(0)40/4802703

 

Axillary web syndrome is a common complication that occurs when there is trauma to the lymph nodes in the axilla--usually after surgery to remove lymph nodes. It has been studied and the cords/webs have been found to be thrombosed lymphatic vessels. The cording can be located just in the arm pit/axilla area, or it can spread down the arm, all the way to the thumb and onto the chest.

Axillary webs look like cords, and the symptoms are pain and tightness, and limitation of movement.

There have been only a handful of medical studies, all of which are observational, and they have all concluded that the syndrome and the webs are self-limiting, and go away in 90 days or less. They also concluded that axillary web syndrome put patients at no higher risk of lymphedema.

However, physical therapists who treat patients with axillary webs have found that webbing can persist for years. And the International Consensus Guidelines on Best Practices for Lymphedema have concluded that axillary web syndrome is a risk factor for lymphedema.

A recent study that demonstrated the benefit of early PT in preventing lymphedema in patients with axillary dissection noted that the majority of women with axillary web syndrome who developed 3-4 weeks after surgery developed lymphedema: 12 out of 18 women. The women with AWS were treated with manual lymph drainage and stretching.

http://www.ncbi.nlm.nih.gov/pubmed/20068255  (the full text of the article is free in pubmed central) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2806631/?tool=pubmed

They wrote:

We also found that 12 of the 18 women who developed secondary lymphoedema had axillary web syndrome during the second and third week after surgery. The axillary web syndrome is a known but poorly studied complication of surgery.54 61 62 No study has shown any link between the axillary web syndrome and the onset of secondary lymphoedema.  We and others32 50 suggest that the axillary web syndrome may be a sign of injury to the lymphatic system and it could produce a lymphatic overload as a result of failure of the lymphatic system. This overload, together with other factors, could be responsible for the onset of secondary lymphoedema
 

 So:

1. Cording is common
2. It may go away on its own, or it may persist for years
3. Cording is associated with the risk or development of lymphedema
4. Treatment of cording involves stretching and scar release, and is best done with the assistance of a skilled PT who is trained in lymphedema therapy as well
5. Cording causes pain and limitation of movement of the shoulder
6. Cording usually shows up in the first 8 weeks after surgery, but can show up years later
7. The past assumption that cording was a self limited syndrome and would resolve on its own with no risk for lymphedema has been shown to be inaccurate: it is a risk for lymphedema, and some cords persist for years without treatment

 

Jane M. Kepics, MS, PT, CLT-LANA, has studied and published on the treatment of axillary web syndrome for years, and recently updated her article and published it on the Vodder site:

http://www.vodderschool.com/treatment_of_axillary_web_syndrome

Her abstract states:

Axillary web syndrome (AWS) is a painful and functionally limiting complication of breast cancer treatment most likely due to lymphatic thrombosis after lymph node resection. Patients describe cord-like structures in the axilla extending into the distal arm causing pain, limited shoulder ROM and functional compromise.  Medical literature claims that AWS is self limiting, resolving in 2-3 months regardless of treatment.

Physical therapists challenge that claim, suggesting that when untreated, pain and disability can last for years. Early rehabilitation intervention is advocated to reduce pain, normalize ROM and return to premorbid function.

Until recently, information regarding the signs and symptoms of AWS was limited and treatment documentation was virtually nonexistent. The purpose of this case report is to describe the clinical problems associated with AWS, to discuss the need for early rehabilitation intervention and to describe the use of manual treatment techniques to treat a patient with AWS after axillary lymph node surgery.  

 

Kepics initial article in Rehabilitation Oncology is available on the web, and is an excellent reference:  Physical Therapy Treatment of Axillary Web Syndrome - Rehabilitation Oncology | HighBeam Research

In the book Lymphedema, by Jeannie Burt and Gwen White, they state that axillary web syndrome is extremely common with 6% of patients developing some symptoms in the first week after surgery and 95% of patients having some elements of webbing by 8 weeks post op. (p91) Some patients will develop cording long after surgery, or have recurrent bouts of it.

Jodi Winicour, PT, CMT, CLT-LANA a lymphedema certification and Breast Cancer Rehabilitation instructor at Klose Training and Consulting, has reviewed the limited research about axillary web syndrome extensively. She has concluded that the cording may influence the development of lymphedema. Her studies reveal that the cause of the cording is likely inflammation after injury to the lymphatics which causes clotting and scarring in the lymphatic vessels.

There is an acute phase, which is more painful, and a more chronic phase, where the pain resolves and the cords soften. There is often some element of vein thrombosis involved as well. She reviewed the pathology seen in the various studies, and thrombosed lymph vessels, some with inflammation that extends into nearby fatty tissue, and some inflamed veins are all components of the cords. There has been talk in the literature about "popping" the cords, and she raises the question of what exactly is being torn.  She concludes that cording may influence the associated lymphedema in the area of the cords, and that lymphedema will not typically resolve until the cords are gently treated.
 

Elisabeth Josenhans a Physiotherapist who practices in Hamburg, Germany has published a study, Physiotherapeutic treatment for axillary cord formation following breast cancer surgery in 2007,  after discovering that axillary web syndrome was essentially unstudied, and the general recommendation was to avoid any manual manipulation of the cords because of concern about causing lymphedema. She studied and treated 123 patients who had axillary cord formation after breast cancer surgery. One of her patients had surgical removal of the cord, and she was able to identify that the cord was a fibrotic lymph vessel.

Her treatments consisted of discovering the "anchoring" of the cord at its origin (normally at the scar in the armpit or the mastectomy scar)  and then carefully manipulating the point of fixation. Also she stretches the cord with manual techniques.

She also utilized scar stretching, myofascial release and other techniques, as well as teaching the patients home exercises. Patients were treated several times a week.

Her treatment resulted in dramatically increased shoulder mobility in 90% of the patients, and cord elimination in 94% of patients. In patients who had lymphedema at the start of therapy, they were treated cautiously and with lymphatic drainage. No patient developed lymphedema due to treatment. Here are photographs of before and after treatments. (Click on thumbnails below for full size photographs.) Ms. Josenhans has been extremely generous and allowed a link to her full article in English and has provided videos that can be viewed by therapists. (Therapists, please contact us for information on viewing these videos.)

  
  

 

Photos permission of Elisabeth Josenhans, Physiotherapist Kunhardtstr 4 20249 Hamburg Tel. +49(0)40/4802703

Post operative considerations: as the lymphatic vessels are fragile and the time for them to heal is limited, it is recommended that you do not put too much stress and stretch on the tissues of the axilla.  A recent lecture at the NLN conference on AWS recommended that for the first 10 days after surgery the arm not be elevated above shoulder level. You can use your arm to brush your teeth and hair, but try to avoid any stretch through the arm pit/axilla.  Anectodately, a national expert commented that women who are doing overhead stretches early after surgery seem to form axillary seromas and more axillary webbing. The lymphatics in the axilla are stretched during axillary surgery, especially sentinel node biopsy, and they are fragile and have limited capacity to heal. So, not stressing the area after surgery allows for better lymphatic healing of surgically disrupted tissues.

So, how do you treat the cords? Self-management involves stretching the shoulder and arm, and with the arm supported on pillows and held away from the body, applying gentle traction on the skin of the arm pit and upper arm. Physical therapy of axillary web involves myofascial release, stretching of the webs and teaching the patient a specific home care program for stretching and releasing the webs.

No one has definitely studied how axillary web/cording, resolves. Do the lymphatics open up again (re-canalize) or do new lymphatics form?

It is clear that few patients are given information about cording, and probably even fewer are treated--especially if most women develop some cording after surgery.

So, if you develop cording that is obvious, painful and limits your motion of your arm, the best treatment is to stretch your shoulder at home, overhead stretches are good, and to get evaluated and treated by a Physical Therapist who is trained in Lymphedema Care.

Please remember that stretching should be limited in the initial post-operative period to avoid additional trauma to the axilla/arm pit, and to allow the delicate lymphatics to heal. When in doubt if it is "safe" to start stretching, please consult with your surgeon and, if needed, a physical therapist who is well trained in lymphedema and management of axillary web syndrome.
 

Please refer to the following links for additional information.

Axillary web syndrome after axillary dissection, Moskovitz AH, Anderson BO, Yeung RS, Byrd DR, Lawton TJ, Moe RE.

http://www.vodderschool.com/treatment_of_axillary_web_syndrome

Josenhans E. Physiotherapeutic treatment for axillary cord formation following breast cancer surgery. Pt_Zeitschrift für Physiotherapeuten. 2007; 59 (9): 868 - 878.
 

Page Last Modified 09/29/2015

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