This information was kindly provided by Shirley in our Poland Syndrome Facebook Group. Shirley gave us permission to publish her account to our blog post. Our hope is this will be of use to others who are experiencing life as an older person living with Poland Syndrome. 

Without further ado, we’ll hand you over to Shirley…..

I think I should call this post “The things I have found out as I’ve got older about my body, whilst living with Poland’s Syndrome”.

I’m left side affected. My Poland Syndrome affects my hand, arm, chest, breast, shoulder, muscles, neck on the left, and has started to affect my right side, too.

I have no latissimus dorsi (broad, flat chest muscle) on the left; that has caused scoliosis, as the muscle on the right side has nothing to pull against. I also can’t put my left hand straight above my head, which meant I couldn’t write and attract the teacher’s attention!

I’ve always had this. I have no median nerve in my left arm, which means some loss of sensation, and my thumb doesn’t move. This was picked up when I had nerve function tests to see if I had carpal tunnel syndrome.

The muscles, tendons and blood vessels are smaller on my left am. My left arm is 4” shorter than my right. I’ve learnt to knit, so that I can shorten jumpers and cardigans to fit my arm. 🙂

I have no pec minor, and my pec major is only 2” long from my shoulder in. This means a) that I get a lot of pain in my shoulder where the muscle ends, and b) my rotator cuff muscles have to do the work of all the missing muscles. This makes my shoulder hurt more – carrying things on my left arm is painful, but as I can’t open doors with my left hand, sometimes, I have to.

My breast bone splits into two, and I have floating ribs on the left. They look wonky when I’ve no clothes on or am wearing a swimsuit. Doesn’t matter, though 🙂

I have had cervical stenosis on the left -in my neck – the vertebrae at C5/6 were crushing the nerves to my left arm, and I completely lost the use of my hand and arm, had shooting pains down my arm and it was also numb. That’s PS related. I had surgery 18 months ago; it has restored some use and feeling, but not all. If you start experiencing pins and needles in your affected arm, get it checked out quickly, else you risk having permanent damage 😞

I have carpal tunnel syndrome in my right, non-affected hand. It sucks. I’ve had surgery twice to fix it. I can’t have it again as the scarring makes it worse. My doctor explained it by saying that my non-affected hand is under much more stress than people’s hands who don’t have PS, as it has to do much more of the work. She said that it’s aging faster than the rest of me.

I had to have heart and lung function tests before I had some surgery, in case they had been affected by PS. I’d never heard of that before, but the anaesthetist showed me the research saying in left side affected people, their heart and lung could also be affected. I was impressed she researched it! Thankfully, mine aren’t affected.

Thank you Shirley. Let us know if any of this resonates with you. We also welcome you to share your own experiences with us via our “Share Your Story” page. We can publish the post anonymously if you prefer. We know many people visit our website to learn about Poland Syndrome because it’s so rare. Information like this,  which Shirley shared is invaluable.