Wednesday, July 16, 2008

Poland's Syndrome

Ok, so I talk a lot about my EDS crap, but what I haven't really mentioned is my Poland's Syndrome. In case you don't know what that is & want a lot more info check here. First let me say lest anyone worry, there is no connection between EDS & Poland's Syndrome that I have found anywhere at all. So if you found this blog because of Poland's & are freaked you'll end up with EDS, stop worrying, they have nothing to do with each other.

So, back to what I was saying, I have Poland's Syndrome (PS), right side affected, a mildly moderate case of it. I have no chest muscles what so ever on the right side except the ittiest, bittiest bit of a pectoral head, nothing on the side of the ribcage & some of the back muscles are missing too. (I think it's funny they are referred to as missing, like I can put up a poster on a telephone pole & someone will call to say they've found them. Well if anyone found them please leave a comment, lol.) I only have 2 bones instead of the usual 3 in my right index finger. I don't have any finger webbing thankfully. I do have scoliosis since birth from the Poland's too. I was dx'ed at birth with PS, it's usually pretty obvious so it's just a matter of a doc knowing the name or just looking it up. This isn't something that's affected my life a ton in a functional manner. Kids are wicked mean so I did have to deal with a lot of crap in the school yard.

I am a righty which surprises a lot of people. Now that I have the OA in both hands I have found my freaky little right hand has a lot more issues & I will never know if that's because it's my dominate hand or because of the Poland's. I can't move my middle finger well & the thing is curving over towards the pinky a lot. Hopefully I can get a ring splint for that finger cause if it keeps going I will have no function in it at all.

Since I missing an entire major muscle system I do have some issues with how I lift, carry & bear weight, add on to that the EDS which doesn't do well with weight borne incorrectly & I've got a lovely catch 22. That is part of the reason I hope to get sent to PT/OT down at Mayo rather than here in town. My small town doc's PT/OT is really going to have to be open minded & willing to learn a lot & change everything from the standard approach.

I'll write more on this as I think of things. The thing with PS is that unless you have a small child with it, are between the ages of 8-18 or are having surgery it's just not something you think of on a daily basis. I really do forget something that everyone one doesn't have a big hand & a little hand, lol.

Here's my right hand showing it's Poland-ness
Poland's Syndrome

And one of it showing it's EDS-ness
Fingers Crossed!

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