Hi I'm new here and I have plagiocephaly. T... - Changing Faces

Changing Faces
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Hi I'm new here and I have plagiocephaly. This is my story

When I was young I had a pretty terrible life. I had a mom who neglected me my brothers and sister. My mom used to lock us up in a room with little to no food for years also whe got beat up on the regular. When I became 17 child protection finally took action and took us away from home. I was fairly happy for the first time in my life. This time the emo scene was fairly in and I had long hair in all different colors you could imagine I also liked to wear eyeliner and all that crazy stuff ๐Ÿ˜œ but then I started balding and I became more and more depressed for some years I tried everything to keep my hair but it just didn't seem to work. I also became aware off my fairly crooked face but didn't give it to much of a thought. Some years later I pulled the trigger and I shaved my whole head. And for me it wasn't a relief I became aware that I had noticeable facial disfuggerment and people started leaving me even my best friends just left out of the blue. After some looking on the Internet and talking with some people I became aware they I had this condition called plagiocephaly and it straight up ruined my life. Its hard going outside or just go to work. I can't hide it because caps don't fit my head. I was wondering if anyone in here got the same and has undergo surgery to make things better. I actually really want to see befores and afters but people don't like to share them wich makes it harder to decide if I should go for it or not.

Kind regards

Vinnie

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Hi Vinnie, Welcome to the Changing Faces community. Thank you so much for sharing your story with us on the forum. It sounds like things havenโ€™t been easy for you. I hope you start to build some support and connections with the members on here. Hopefully some people can share their advice to help you.

You can also get in touch with the Support and Information Line here at Changing Faces , either by calling 0300 012 0275 and talking through your situation, or emailing us at support@changingfaces.org.uk. We also offer counselling support specifically around coping with visible difference, so that may be something youโ€™d like to explore as an option.

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Hi Vinnie,

I just wanted to say, from your photo, you're a good looking guy. I certainly wouldn't/can't notice anything 'wrong' with your appearance. You may be attributing other motives of people to this. If it continues to bother you though, maybe look into hair transplants. But really, I think you look fine, and I promise I wouldn't just say that.

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Hi Vinnie! I was also born with craniosynostosis (oi!). Have you been diagnosed by a doc? If you have discovered your difference on your own and self diagnosed, based on your photo, I think you may have Brachycephaly? I say this because I was a plagio baby and my head is noticeably asymmetrical/crooked (ears, forehead, eyes, etc). Unless I'm missing something, I don't see any asymmetry on you. I do notice your skull may be a little tall, but not abnormally so. :)

As for surgery, I finally had it at 36. My head may be even more misshapen than it was before. I told doc my primary concern was my forehead and eyebrow, so I got an implant. I now have a "normal" forehead but the rest of my head is the same. I'm a little resentful that he didn't suggest an implant that would round my head out, but whatever.

I don't post pics for a few reasons, number one being I just want people to see my personality and not my appearance. The other reason is shame. I also don't want to be fully visible online with my difference, because the anonymity makes me feel empowered to express my concerns.

I'm glad you're here and are comfortable to share your story. I hope I didn't sound like I was trying to correct you above, just thought you might be open to exploring other possibilities.

Also, who was your favorite band from your emo days?

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Hi yoni yes I have been diagnosed with deformational plagiocephaly it's mild to moderate I can agree its not that visible in this picture as in others but you should keep in mind this is an exactly straight front picture so you still can see te left side goes more down than the right side and my nose is not in line with the point of my head :p actually I have a really small head it's just slanted up to the back making it appear big in front photos but in a side profile it's looks almost flat except for the back that's round on one side and flat on the other side. I also have one eye bigger one ear is more in the front of the face one cheek is fuller a flat spot on the left side of my head and my nose is not in the middle of my skull. 17 oktober I have an appointment with a cranio facial doctor to see what can be done. My favorite band was from first to last and bless the fall ๐Ÿ˜Š

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I didn't mean to offend you Vinnie :( I thought if you were still curious about it you might want to read up on the other condition too. I just thought it was cool to finally talk with someone else who shares a cephalic disorder. We are few and far between. I've actually only known one other person in my life with the condition and I met him online! But I see now that I took the wrong approach. I know how difficult it has been for me when the people who couldn't readily see my condition dismissed my concerns. It feels even more isolating and frustrating when people don't acknowledge what you know to be factual and real. So I'm sorry if that's what I did without intending to, it was careless of me.

I'm glad you're here and I would really like to talk more about what it's like to live with plagio when you are ready. I'm curious to know what the specialist says!

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Hey I'm totally not offended ๐Ÿ˜… maybe it's my writing style English is not my native language ๐Ÿ˜

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First time hearing them but I really like bless the fall! Thanks for introducing me. They are both great bands and the vocals on the second one are so powerful. ๐Ÿ™Œ

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