Frozen (post #13 in my 30 in 30 series)

shoulderNo, kids, this is not a post about Disney’s smash movie (although I’m anxiously awaiting the sequel! ).  This post is about a very painful condition that I developed after my mastectomy, and upon doing some research, I found I’m not alone.  I experienced some of the more common side effects right after my surgery, such as numbness in my arm and chest, limited range of motion in my arm, and some fluid retention.  Nerves had been cut and damaged as part of the surgery, and I had multiple lymph nodes removed.  I was told the nerve damage would take anywhere from 6 months to a year to heal (actually, I finally have full feeling in my arm and underarm after 3.5 years) and the fluid could be a sign of Lymphedema. My Oncologist sent me to a specialist for evaluation and education.  WebMD defines Lymphedema as “an abnormal buildup of fluid that causes swelling, most often in the arms or legs. The condition develops when lymph vessels or lymph nodes are missing, impaired, damaged, or removed. The lymph nodes are part of the lymphatic system which helps fight off infection and clears debris from the body.”   Fortunately, with massage and physical therapy, I was able to eliminate the fluid build up and did not develop Lymphedema (although I will forever be at risk of developing it and have to take some precautions to avoid it, which I will explain later).  However, the stiffness just seemed to get worse and a tendon underneath my arm became extremely tight, like a taut, steel wire.  It became increasingly more painful and difficult to move my arm.  I couldn’t raise my arm much higher than my waist.  One day, I attempted to wave goodbye to my kids, and a terrible burning/shooting pain ran from my shoulder to my fingertips. It literally brought me to my knees.  I couldn’t take it anymore.  I was referred to an Orthopedic surgeon, who diagnosed me with “adhesive capsulitis” – better known as a frozen shoulder.  We tried a different course of physical therapy in an attempt to restore range of motion in my affected arm and break up scar tissue that had formed and was restricting movement.  The last resort, my doctor explained, was surgery – Manual Manipulation Under Anesthesia.  Sounds like fun, right?  It would be too painful to move my arm in the way she needed to and break up the adhesions, etc. while I was awake, my doctor said, so I would have to be knocked out.  I really hoped the physical therapy would work.  Turns out, it wasn’t enough.  I ended up the having the surgery and am so glad I did.  My arm will never be 100%, but it’s so much better than it was.  I can lift my arm above my head (although it’s still a bit stiff) and can wave goodbye with no threat of crippling pain.  I still have to be careful, however, not to put too much strain on my arm.  I have to avoid having my blood pressure taken on my affected arm and have to get my blood drawn on the un-affected arm.  Anything too tight or restrictive can affect the flow of lymphatic fluid and pin or needle pricks can increase my risk of infection, which can all lead to Lymphedema.  When I fly, I wear my compression sleeve because the change in cabin pressure can affect my circulation and increase the risk of swelling.  I have to be mindful everyday, for the rest of my life, of how and how much I use my arm.  But, I’m thankful to report, today I am frozen no more and, with a little knowledge and self-care, I can keep it that way.

* For more information on Lymphedema, please visit

* For more information on frozen shoulder or adhesive capsulitis, please visit


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