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

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

Vinnieplagio
Vinnieplagio

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 😜 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

11 Replies
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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 haven’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 you’d like to explore as an option.

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.

younique
youniqueCommunity Ambassador

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?

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 😊

younique
youniqueCommunity Ambassador in reply to Vinnieplagio

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!

Hey I'm totally not offended 😅 maybe it's my writing style English is not my native language 😁

younique
youniqueCommunity Ambassador in reply to Vinnieplagio

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. 🙌

(Sorry for weird phrasing and typos, English isn't my first language)

Hey Vinnie ! I know you've posted this 6 months ago but I'm still giving it a shot haha. I'm Pierre, I'm 22 and I have a Plagiocephaly (type 4) too !

That's a rough past you have, I hope you are okay and healthy now :)

I don't like saying things like "you look perfectly normal to me" etc, because what I think isn't what matters, what matters is that YOU feel a certain way about your appearance, so I'm not going to do that. All I'm going to say is that the first noticeable thing about you is that you're beautiful, and not that you have an asymmetrical face !

Personally, my mom didn't know that untreated head deformations would be irreversible, because the pediatrician told her that "it was unimportant" and that "it would fix itself on it's own" so I never received the proper care.

I've never been diagnosed formally, but all it takes is two eyes to see that my face is f*cked haha ! I went through depression (it started at age 17/18 and lasted for at least 2 years) and my appearance had a significant role to play in it. I noticed my plagiocephaly when I was ~19 and I've been ashamed of it ever since, even though I am coping with it way better now :)

Although I feel good about myself, this major flaw is still impacting my self esteem and my social life greatly. I've received multiple remarks and jokes about my face, and it hurts a lot...

I always try to hide the right side of my face, even when I'm talking to someone I compulsively try to cover this side of my face by scratching my forehead, touching my hair etc (it sounds very ridiculous, I know, but I can't control it, it's like an urge :/ ).

I've been pondering about whether or not it is worth it to try surgery, and I came to the conclusion that the benefits would be greater than the risks. Yes the surgery could go wrong, yes I could die or be disfigured, yes I could end up with a face I just don't like, yes it's expensive etc... But I know that if it succeeds it would make me feel more confident, and that I would stop being so self aware about my face.

I'm considering different types of surgery, but especially implants (in my forehead and eyebrow region, mostly) to hopefully even out the symmetry

Or at least try to make it more harmonious, because my face is SEVERELY asymmetrical so I really don't think it's possible to make it fully symmetrical.

I never notice other people's flaws, maybe I'm just really self centred or a narcissist, but when people complain about their face I just don't get it, because they look perfectly normal to me. But when I look at my own face, especially on pictures. .. I just see a REALLY weird looking man...

And knowing that all of it could have been avoided if I had worn a special helmet for a couple of months makes me feel really angry, frustrated and sad...

I may consider Korean surgeons, it appears to be a common practice in south Korea. But I, obviously, don't want to get scammed and I want it be well done by a renowned professional, so I have a lot a research to do.

Hi I wanted to reply to this forum post as I have plagiocephaly and it affects my life greatly the two ways I have cpmbatted this is plastic surgery with a surgeon willing to do this kind of operation I found a plastic surgeon in Indianapolis who did a fantastic job. My problem isnt only plagiocephaly its combined with a form of OCD called BDD (body dysmorphic disorder) so it has consumed alot of my mental energy and time so far as to say my whole adult life from being a teenager has been consumed by this and alot of teenage bullying has shaped my view of myself which is ridiculously hard to shake off. Even having had the surgery I still relapse and it is exhausting... here is the website i mean... bddfoundation.

. it should offer some help into something that is as much mental as it is physical

Vinnieplagio
Vinnieplagio in reply to Jimuk

I assume that you have gone to dr Eppley? I know him for using implants for plagiocephaly sadly my case is a bit worse im a type 4 too and my posterior fossa and anterior fossa are not in lign wich makes it almost useless to have implants. my face is not extremely asymetric my face is just twisted to the side if i make any sense 😅 its really noticable too now im bald i look like the dude from the hills have eyes lol. My body also tried making up for the twist of my face causing a rotational scoliosis wich perforated my lungs a couple of times and is getting worse with age. I do believe it causes mental problems like anxiety and self awareness but i dont believe i have bdd because its not like i'm seeing things that aren't there.

Hello everebody ! Im Alicia, I have 20 im French, I have a plagiocephaly too, for me the hardest is my facial asymmetry, I dare not leave my house and I am in depression, I do research for surgery but there is a lot to do on my face and it is expensive...

I hope you are all OK, stay strong ❤

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