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 profile image
22 Replies

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

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Vinnieplagio
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22 Replies

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.

Bellyful profile image
Bellyful in reply to

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.

Vinnieplagio profile image
Vinnieplagio

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 profile image
younique in reply toVinnieplagio

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. 🙌

Vinnieplagio profile image
Vinnieplagio

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

(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.

Jimuk profile image
Jimuk in reply toCrookedSelfEsteem

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 profile image
Vinnieplagio in reply toJimuk

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.

JP12345 profile image
JP12345 in reply toCrookedSelfEsteem

Hey I also got plagio. If you want to talk my instagram is ikbenjp. Feel free to send me. I’m also 22 and dealing with plagio.

alsvld profile image
alsvld

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 ❤

JP12345 profile image
JP12345 in reply toalsvld

Hey! If you wanna talk my instagram is => ikbenjp

I got also plagiocephaly.

paulhenry profile image
paulhenry

Man from what I see it's very moderate.

Actually I am not even sure it can be considered as a medical issue since so many people would be the same with shaved head.

You should also consider that it might be invisible in real life as you are constently in motion.

But I agree with something : once you notice it it can be really difficult to live a normal life without constently thinking about your problems.

I have also some plagiocephaly which I've noticed on some pictures taken by my friends after I shaved my head... That was a tough time. But I guess that we should accept ourselves like this. Especially if we have live a life without even knowing that issue for more than 20 years...

Vinnieplagio profile image
Vinnieplagio in reply topaulhenry

Hi paul, im diagnosed with severe deformational plagiocephaly and facial scoliosis in the meantime. the reason im considered severe is because of anterior cranial base shift of 10 degrees wich is quite rare for deformational plagiocephaly. usually its not more then 2. This means that my asymmetry is not just buldging but more like the skull grew diagonally forward and rotated the face. Because this can lead to neurological problems doctors already agreed in doing skull surgery to try correct it but ofcourse it will never look completely normal . I defnitly agree that this picture doesnt seem bad at all but it was taken from a slight angle and i cut it out. People indeed do not always see it expecially if i wear a hat and a hoodie but i once went to a party and pictures had been taken and i went arround facebook for a while wich in itself is quite disturbing.

Plagio88 profile image
Plagio88

Vinnie, how are you? Do you have an update of your journey? I too have plagiocephaly and was hoping you could give me advice and what treatments you have had? I'm in the UK. Thank you

Vinnieplagio profile image
Vinnieplagio in reply toPlagio88

I didnt have any treatment yet depending how your morphology is in plagiocephaly every person need other types of treatment a twisted face isnt treatable o think. My doctor is uk based too hes probably one of the best doctors out there because he really cares about his patients

Tzor profile image
Tzor in reply toVinnieplagio

Hello Vinnie, Did you always know you had plagiocephaly or was it something you learned about much later in your life? I'm asking because I strongly believe I too have plagiocephaly. My head is shaped like a parallelogram and I also have quite noticeable facial asymmetry, but I have never been "diagnosed". Even though I know there's not too much I can do about it, except for surgeries ofc, having a Doctor tell me that I indeed have this condition would bring me some clarity and peace.

Kind regards

GranolaNguoi_Yeu profile image
GranolaNguoi_Yeu

Hello, I'm 29 years old, and I recently discovered that I have plagiocephaly. This has made me feel truly vulnerable. Throughout my upbringing, I've been searching for answers as to why I don't have a symmetrical face. I even encountered issues with a crossbite. How about your situation? Any good news?

in reply toGranolaNguoi_Yeu

Hi GranolaNguoi_Yeu

Just wanted to send you a warm welcome to our online family!

This is an older thread, but sure, there are folks here in the same position as you who can relate. Most if not all members will have some visible differences, or care for someone who does. And while we cannot know for sure what life is like for you (unless you feel able to tell us, but no pressure. That is solely a matter for you) we can empathise, because we’ve also been somewhere very like it.

Hope you hear back soon, but mostly importantly, welcome! Please post if you need anything.

Cb

RebeccaChangingFaces profile image
RebeccaChangingFacesPartner in reply to

Hi GranolaNguoi_Yeu , a belated welcome to the Changing Faces community & happy new years wishes. As well as our Community Ambassadors, there are some Changing Faces staff members on the forum too (we all have "Changing Faces" in our user names).

It's great to see that there's already been a conversation flowing, I hope you find it supportive to meet & chat with members of the community here.

If you are based outside of the UK then you can also access our support & information guides on our website here: changingfaces.org.uk/advice... There are loads of different topics, so hopefully you will find something usefull.

Rebecca - Changing Faces

Vinnieplagio profile image
Vinnieplagio in reply toGranolaNguoi_Yeu

Hi, i went to a couple of craniofacial surgeons in my country, but most of them dont see plagiocephaly as a serious condition because they say its a "cosmetic" issue so sadly not a lot of progression. The picture i posted above actually makes it look not as bad as it really is. If im looking in a mirror it kind of looks like im turning my head like you would see in people with torticollis. I wear a hat and a hoodie everywhere i go and people dont seem to notice that way tho wich is a good thing. I also went to therapy because i didnt go outside couple of years ago because i felt ashamed and it really helped me. I think plagiocephaly is highly misunderstood among doctors so be aware that not everyone will take it serious. And i definitely know how youre feeling right now. If you ever need a talk im always here :)

GranolaNguoi_Yeu profile image
GranolaNguoi_Yeu in reply toVinnieplagio

I truly understand that it wasn't until I turned 29 that I realized I have plagiocephaly. Doctors in my country are almost unfamiliar with this condition. Even my family denies it, insisting that my head was entirely normal when I was little. My struggles have been met with little empathy. I don't understand why someone with an unusual face throughout their upbringing is often considered perfectly healthy. While my case doesn't affect intelligence, you can imagine how I feel right now. Have you ever thought that we might have some psychological condition leading to this obsession? But my perception is that it genuinely exists and is quite evident!

Vinnieplagio profile image
Vinnieplagio in reply toGranolaNguoi_Yeu

i think that a big part of why people dont recognize it as much as we do is because they look at us from a 3th person perspective. plagiocephaly causes a twist in the face wich we perceive in mirrors or cameras as higly assymetrical because we know exactly where we looking at and what our front is, but to others it just looks like we are turning/twisting our head . combine that with having a longer hairstyle or wearing hoodies with a cap all the time and its easy to get unoticed. its easy to fall into a obsession over this and create psycholgical conditions like severe depression and body dismorphia, but i do think that this is caused by plagiocephaly and not the other way arround. just like you i only started really understanding what was going on with me when i was older. i did notice my twist from time to time in a mirror when i was really young, but i just thought my mirror wasnt straight on the wall and went on with my life. its expecially hard to deal with this condition because we didnt grow up thinking we looked like this. people who have severe facial disfugerment from a young age had a lot more time to deal with it emotionally and we are just starting our journey now without having the benefit of having a lot of support other then therapy.

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