Patient Comments: Poland Syndrome - Treatment and Surgery

Question:

Please share your experience with surgery to treat your Poland syndrome. Submit Your Comment

Comment from: KZ, 55-64 Male (Patient) Published: November 12

I was born in 1955 with Poland syndrome, and all doctors told my mother to amputate my right hand till she found one who tried to fix it. She had multiple surgeries as a kid. I always had to figure out a different way to do the same thing as everyone else. That served me well as an adult in business world. Grew up on a farm, very physical, took up steer wrestling in rodeo at age 49. My mother never made it a handicap, just something I had to deal with. Couldn't offer better advice. Only as big a handicap as you make it.

Comment from: Janeygirl, 45-54 Female (Patient) Published: July 27

I am a 54 year old female born without pectoral major and an under developed right arm and hand due to Poland syndrome. I am married and after I had 2 children (they are normal) I had a left breast reduction to match the size of my smaller breast. My insurance covered the surgery. My plastic surgeon submitted photos and medical paperwork to the insurance company. For those of you who could possibly have a reduction of the normal breast I highly recommend it. I am happy with the outcome. I had this surgery approximately 17 years ago.

Comment from: Abigail Joy, 65-74 Female (Patient) Published: October 03

My treatment for Poland Syndrome began at age 3 where I was taken from my parents to a far away hospital and my fingers were separated one at a time with skin for between fingers being removed from my abdomen, thighs and other non hairy places. But always my own skin was used as far as I know, with care being not to mar me from ever wearing swim suits, etc. I use my hand as much as possible, including typing this. My heartfelt thanks go to the doctors who helped me when I was young. I am about to retire from a high profile job I have done for 50 years, helping all people 8 to 10 hours a day in the medical field.

Comment from: JAG, 7-12 Male (Caregiver) Published: August 26

My son was diagnosed with Poland syndrome at the age of 9 months old. My older sister noticed the missing muscle on his right breast. So far, he is dealing with it pretty well. Most of the time he's oblivious to it. His condition does not interfere with his movement, and he's very active at 11 years old. He is a great soccer player. Once he cried about it but I told him that as long as his brain is intact, that is all that matters. I am not sure what the future holds for us, and I'm sure once he hits puberty, his attitude will change about his body. I just hope and pray that he will not be too conscious about it. I am working on building his self-esteem and telling him that he's a good looking young man and instill appreciation in him for what he has.

Comment from: linda, 55-64 Female (Caregiver) Published: April 07

I had Poland syndrome from birth, left side abnormality, hand and breast. I had surgery at a young age separating two web fingers and 1 animal type finger. I am 62 years old and not regret a thing. It's all in how you think in your mind. Society make you disabled if you let them. I've driven all types of school buses, worked in factories packing cookies, worked as cashier, took care of disabled people, still doing that, and raised two children (normal). There were things I wanted to do in life and couldn't, like go into the navy, play the piano or violin, and do secretary work, but I'm typing now and I'm just not as fast as someone with 2 good hands. I can do more things than the things I can't do. For those that are young with Poland syndrome don't have that disabled mind set, go after what it is you want to do in life, try it you may be able do it, just not in the way others can do the same thing.

Comment from: LLL, 25-34 Male (Patient) Published: November 08

I recently knew that the name of my chest problem is Poland syndrome. I was born without the right chest muscle and I was conscious of it at the age of 16. I never showed my chest to people and I do everything possible to hide it from people because no one seems to understand the abnormality. It prevents me from putting on fitted shirts unless I make some adjustment under my shirt so that people won’t notice it. Now I am 25 years and I am still confused with it.

Comment from: JOHN.M., 45-54 Male (Patient) Published: April 22

I am missing my right pectoralis major/minor, and my doctor has only given me a diagnosis of 'deformity'. I remember this as being evident to me at the age of 5 years. Most health care providers seem to avoid the issue, or, are uneducated to it. More emphasis should be put on proper diagnosis and treatment, although, this isn't the case.

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