It's complicated

Part of the reason I did not do much blogging in the last couple of months of 2010 was that I was doing physical therapy for my shoulder.  Although at first I did not recognize any connection between my shoulder problems and my mastectomies, it turns out that they are directly related.

About six to eight months ago I began experiencing sharp pains running from my right shoulder to my elbow or sometimes my wrist with certain movements, mostly reaching to put my purse on the back floorboard of the car or reaching up to a high shelf in my kitchen.  I sleep on my right side most of the time, OK virtually all of the time.  I reasoned that spending so much time sleeping on my right shoulder was the cause of the pain because I did not recall doing anything specific that might have injured my shoulder.  I tried sleeping on my left side but once asleep I almost always rolled back to my natural position.  I stopped doing various upper body exercises at the gym thinking something I did there might have caused the issue and that if left alone, it might go away on its own.

As time wore on, however, the occasional twinges and sharp pains became more frequent.  By October, every time I reached either up or back with my right arm I would have pain and after the pain, numbness in my hand would linger for several minutes. Clearly, doing nothing and resting were not working so it was time to take action.  I paid a visit to the orthopedist who set my son's arm in a cast several years ago where I learned that my right shoulder joint is out of alignment.  Specifically, the ball of the shoulder joint is being pulled forward from where it should be causing certain movements to pinch a nerve because the joint was not in its proper position.

Why is my shoulder not in the proper position?  Scar tissue is the biggest reason, followed by poor posture and having an exercise regimen that did not sufficiently emphasize the muscles in the upper back.  I learned from my physical therapist that what I had thought was standing up straight did not put my shoulders into proper alignment and therefore could not be considered good posture.  In order to put my shoulders into proper alignment I need to pull my shoulder blades together.  When I did that my left shoulder would be perfectly aligned but my right shoulder stayed stubbornly forward.  My physical therapist put me on my back and stood over me pressing my right shoulder back into proper position.  When I moved my arm up or back when my shoulder was in place the movement was pain free.  As expected, the shoulder did not impinge a nerve when properly positioned.  The problem was that as soon as she took her weight off my shoulder it would pop forward again as if attached to a rubber band.  She told me that much of the issue was the scar tissue in my chest caused from my prior surgeries.  The bad news is that it is impossible to break up scar tissue that is nearly four years old.  The good news is that with a lot of stretching of the muscles and tendons, and strengthening the upper back muscles, I should be able to compensate for the scar tissue and regain pain-free movement.

So I have spent much of the past three months stretching my shoulder and my chest muscles while doing more than a dozen different exercises to strengthen the back of the shoulder and my upper back muscles.  Oh yes, and constantly focusing on posture and the alignment of my shoulders.  I must say, I truly loath some of the exercises, they are awkward and difficult.  But I do them.  In order to operate pain free I need 45 minutes a day just for my shoulder exercises.  And shoulder exercises do not keep me in good aerobic shape.  As the mother of two very busy kids, my days don't always have a lot of extra time, but for now I am doing what I need to do.

The result after three months of physical therapy?  I can now put my purse in the back seat without pain and I can reach things on the top shelf in the kitchen without pain 98 percent of the time.  I can also pull my shoulder into proper alignment by standing up straight and pulling my shoulder blades together.  Granted, in order to get the right shoulder where it needs to be I must pull my shoulder blades together with an exaggerated motion but at least I can get the shoulder where it needs to be without the help of another person, which is significant progress.  When I do have pain I stop, realign my shoulder and try again, which works most of the time.

What I have noticed now is that when I focus on my posture and my shoulder blades, my shoulders are both perfectly aligned.  When I relax my right shoulder pops forward.  Sometimes I stand in front of the mirror to see how much movement the rubber band in my chest causes.  When I relax, my left shoulder moves only imperceptibly but my right shoulder moves about two inches.

When I was contemplating my mastectomies I wondered how I would feel about my decision in future years, especially if I had some sort of negative consequence.  Now I am revisiting this question because it is clear that I am going to deal with shoulder issues caused by scar tissue for a long time, and quite possibly for the rest of my life.  

None of us who choose to have preventive mastectomies does so lightly.  We all recognize that we are making life-changing and life-altering decisions.  We make this decision reluctantly but because we recognize that this is the most effective way to reduce our overwhelming breast cancer risk.  None of us expects or anticipates complications from our surgical choices.  Nonetheless, we all recognize that both short-term and long-term complications are possible.  We are mentally prepared for the short-term possibilities: pain, restricted movement, swelling, post-surgical infection, failure to heal, seromas, etc. What many of us do not anticipate is that complications may begin years after our surgery.

So how do I feel now about my decision to have preventive surgery?  To be honest I have conflicting emotions.  On one hand I am depressed about having to deal with what is likely to be a chronic problem.  On the other hand, I remember vividly the all-consuming fear of breast cancer that pushed me to make the decision to remove my breasts.  I also remember the wave of relief after my mastectomies that erased that fear.

Would I do it over again if faced with the same decision?

Yes, absolutely yes.

But next time I would get physical therapy immediately following surgery to help prevent the scar tissue that is now causing me problems.

For now, I am off to stretch ...


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