The question of treatment is often an immediate response once Poland Syndrome is identified.  There are two aspects to that questions as there are two aspects to how PS effects the body.  In this post I’ll address the options for treatment for the Poland Syndrome hand.  I will tackle the issue of reconstructive surgery for women in another post.

Full disclaimer:

I am not a doctor, nor a medical person of any kind.  I speak from my personal experience and from my research.  I offer this post as a help and maybe a starting point; not as the end all for making a decision.  Take this as part of the information you use to make a decision, and nothing more.  And with so many variations to how a hand might be effected it would be impossible to offer a definitive answer, even if I were a doctor.

There are a number of considerations when thinking about the hand.  The end goal should be how to maximize its use.  What can be done to give it ultimate use, function and flexibility given its current state.

Surgery or no?

That is the first question.  Should surgery even be done?  It certainly isn’t required or necessary in that without surgery life would not go on.

In making this initial decision one must consider

• how much functionality does the hand have as-is?
• how much potential functionality would the hand have with surgery? (I saw potential because there is an assumption that the surgery succeeds as planned and the results are as hoped — that no one can guarantee that)
• Take into consideration the inherent risk of surgery.  It is likely on the lesser end of risky surgery, but it is still surgery nevertheless

If the answer to the yes/no question is yes, surgery then there are more considerations:  Firstly, WHEN?

When should this surgery take place?

As an infant comes with advantages: primarily that the child will grow up accustomed to the hand post surgery and will not have the learning curve that might come if the surgery is put off until a later age.  But there are greater risks for an infant to undergo anesthesiology.  Each family needs to decide on that.

It can wait until an older age, but by that time any surgery will likely disrupt life as the child knows it.  Recovery time will put the child out of sports, out of musical instruments, out of Physical Education class.  That may seem a little matter now, but it might not be a welcomed disruption later on.

Details of the surgery

The details of the surgery will largely be dependent on the specifics of each person.  This is something that truly needs to be discussed thoroughly with a doctor who specializes in hand surgery.

As for me, I did have surgery, when I was under 1 year of age.  My parents did their analysis of the options and decided that any risks associated with the surgery were less than the benefits it would provide.  They opted for surgery as an infant so that I would grow up using my hand, and could develop my own adaptations, rather than later needing physical therapy.

Here is a picture of my (unmanicured) hand.  Feel special, feel very special — I don’t photograph my hand for just anyone 🙂

  I had all 5 digits when I was born, but the middle three were just stubs and the   doctors didn’t expect them to grow at all.  The three middle fingers were removed leaving me with my thumb and pinkie.   Both remaining fingers only have a single joint, giving me a pincher grasp.

It is somewhat functional.  I am typing right now with it, and can type 60+ words per minute.  I do not have any strength in my grip but can grasp light objects.

I’m pleased with how much functionality I have given the circumstances, and would likely opt for the same decisions if I had a child born with a hand like mine.

 

Please let me know either in the comments below or via the contact form if you found that helpful in any way.  And if there are additional questions you have that I can address, I am here to help in any way I can.