View Full Version : Think I may have untreated CS- how can I find out for sure?
01-23-2011, 07:24 AM
I've always thought my face was far less symmetric than normal and possibly my skull but never really thought much of it other than unlucky genes. Than a few weeks ago my sister in law mentioned how I looked better with a hat on because my skull wasn't shaped normally, so I did some research and found out about craniosyntosis.
It seem like I may have a mild version of it but I can't tell for sure, or what form of it. Would a reguler doctor be able to tell or not without me having to get an mri or other scans(no insurance currently)? Would anyone be able to tell if I posted pictures here with my head shaved also.
01-23-2011, 07:28 AM
Welcome to CK...We are pretty good "head pickers" around here. I'm sure someone will be able to help you out.
My daughter was obvious at birth and her dr had no clue, it's pretty normal to hear stories where families have to push to get a diagnosis.
01-23-2011, 08:30 AM
Hi there and welcome! I am not terribly sure that a regular doctor would be able to tell you much about your head shape, it is really hit or miss. Unfortunately we see so many kids here whose doctors didn't know about craniosynostosis (ours was one of them) and it was left up to the parents to push to find out exactly what was wrong. I think your best bet might be to put up a picture or two here, see what kind of responses you get, and then see your doctor. You might also consider seeing a craniofacial doctor instead of a regular doctor, they would be more familiar with craniosynostosis.
01-23-2011, 09:21 AM
Welcome to CK. You didn't mention your age or if you currently have your head shaved. But if you give us some pictures from the top (wet your head down well if you have hair), from the front and from the side, we might be able to tell if you have a form of cranio. Have you had any symptoms that would lead you to seek treatment? Or are you just looking for answers?
01-23-2011, 09:31 AM
Welcome to ck! We would be happy to help. If you post pictures, we'll take a look and give you our opinions.
01-23-2011, 09:40 AM
Just took some pictures a bit ago didn't wet my hair down though ill have to redo them. I'm 21, and I have double vision and sharp headaches sometimes, no idea if those are symptons. Im just curious and looking for anwsers I guess.
01-23-2011, 10:51 AM
How do I attach an image??
01-23-2011, 10:51 AM
Nice of your sisiter in law to say that. Some people are unbelievably inconsiderate.
I'd be happy to take a look at your photo's. I'm an untreated adult!
I wouldn't go so far as to shave your head though, unless you want to of course, but I am sure if you soak your hair an mat it down we will be able to see what's what!
01-23-2011, 10:53 AM
click on reply. manage attachments. press browse to find the file then upload!
01-23-2011, 11:19 AM
Can only do 5 at a time, have 2 more looking up at my face than some side ones. This was really tedious, had to hold the camera as far away as I could. Took about 100 shots and only 10 of them were reasonable, none of them were good. I'm getting hair cut in like 2 days so I can redo it than, really don't think these show it well enough.
01-23-2011, 11:25 AM
01-23-2011, 11:25 AM
Tell your sister in law to "go forth and copulate" there is absolutely nothing wrong with the shape of your head!
01-23-2011, 11:35 AM
Here you can see it kind of. I think the right side seems slightly sunken I guess, really asyemmetric at the least.
01-23-2011, 11:45 AM
No, still nothing!
Look, your sister in law is obviously and idiot so her opinion is moot. If 500 people tell you, you have a weird shaped head, you might well have a weird shaped head. I'm guessing the only person to say so is your sister in law right.
So don't fixate on something that isn't there or you will believe it's there when it isn't. Just enjoy your life and ignore you sil. People that make open observations about others when they haven't been requested to are normally very insecure and just trying to make themselves feel better.
01-23-2011, 11:53 AM
Well after I get my hair shaved off im gonna redo 3 or so and have someone else take them to be sure, because I don't think these got it that well, at least not the front ones.
You can notice how one of my cheeks has like twice the mass of the other one though, isn't that a result of some form of cs?
01-23-2011, 12:02 PM
Your right cheek looks a little puffier than the left but bone structure looks fine. Maybe you have a little inflammation there, maybe you have a slightly puffier right cheek. No ones face is perfectly symetrical.
If you put a mirror down the centre of anyones face, even famously good looking people like Brad Pitt for example and he would look very strange mirroring the exact inverted reflection of each side of his face. Everyone does. A little asymetry is what makes us who we are.
You look about as normal looking as any human being I ever saw, hand on heart!
01-23-2011, 12:18 PM
Your head shape looks good to me. It does seem like the right side of your face may be just a tiny bit fuller than the left. Sometimes cranio causes "facial asymmetry". My two year old's face is slightly fuller on the left as a result of a closed left lambdoid suture at the back of his head- it pushed his brain forward on that side and therefore his face filled out a bit more than on the right. Facial asymmetry can be the result of in utero positioning and in fact my sons surgeon told me that a large percent of the human population has some slight degree of assymetry for just this reason. There is also a mild condition called positional plagiocephaly which means that there is a flat spot on the head which occurs from an infant laying in one position all the time- the flat spot is not harmful to the child's brain the way craniosynostosis is because no pressure is put on the brain since sutures are open. It is sometimes also called flat head syndrome and it can cause one side of the face to become fuller than the other. I think your head shape looks good but if you got some more pics from behind I will be glad to take a look.
Unless a case of lambdoid was really mild- in other words only a partial fusion or a fusion which occured quite late (like after a child's first birthday) it would be pretty obvious that there is a skull deformation- my sons lambdoid occurred in utero or just after birth and by the age of ten months his disfigurement was severe. He had an enormous growth at the back right and the left side of his head was quite narrow. Another form of cranio which causes asymmetry is coronol cranio but that also causes the eyes to look quite different in shape- one looks popped wide open and the other looks like it is squinting and you certainly don't have those features.
What I am saying is I do not think you have cranio but you possibly have plagiocephaly (does your back right seem a litle flat when you put your hand back there?) or the way you formed in the womb allowed for a slightly fuller right side. Neither of these things should present any serous issues for you. If you want to seek a medical opinion you should go to a craniofacial surgeon because they are the ones who deal with this sort of thing and could evaluate you- a regular doc will just brush your concerns aside as they did for so many of us with our babies when we knew something was going on. I'm sorry you have headaches and double vision- try to get some insurance somehow and then go to an eye doc too- additionally they can check for papil edema which indicates inter cranial pressure so not a bad idea to check that if cranio is at all suspected. I don't know if any of this helps... you look very handsome and honestly I wouldn't let this bother you in the slightest... go forth with confidence and live life to the fullest... you are at such a great age... you can do anything you want- be anything you want to be... just go out there and go for it!!
01-23-2011, 12:32 PM
Well even ignoring my face completely, I've shaved off all my hair once ever(it's usually much longer than in the photos), and when I did I thought one side seemed somewhat sunket and strange compared to the other. That very same day my sister in law commented on it to so it would be a pretty amazing coincidence.
Anyone else agree with monty or care to speculate?
01-23-2011, 12:36 PM
Oh well plagocephaly was what I was thinking I had or something like that, I thought that was craniosyntosis? It's like one side is slightly flattened because I always laid on it that side as a baby or something.
01-23-2011, 12:38 PM
Dude if you are getting double vision and headaches you need to find out why and for that reason you should seek specialist help.
All I'm saying from those photos, from a purely aesthetic point of view I would never in a million years say you look out of the ordinary in the slightest.
However, shaved would show better and sometimes having the camera about 3 ft away gives a better impression as well.
All that aside, seek professional help re your headaches and vision for sure and not just a gp, get a referal to a specialist. If necessary demand one!
01-23-2011, 12:43 PM
I've already checked that out several years ago, eye doctor basically told me I had to live with it, and headaches last like 5 seconds and have never happened more than twice a day.
01-23-2011, 12:47 PM
01-23-2011, 12:55 PM
There are people on here who know better than me. I think you may well want to see a neurologist or a cranio facial specialist. I saw a cranio with my concerns and they booked me a ct. If you get a ct and it confirms plagio or something along those lines then they will look at other angles.
As I see it an optometrist will tell you if your eyes are functioning properly, not you brain. You should see someone re your skull and your brain as I presume your eyes checked out ok?
01-23-2011, 01:14 PM
Yea, but ill probably put all that stuff off until I have insurance, not like anything can be done about it anyway. Thanks for the help so far everyone; ill check back in a few days and get some pictures without hair when I do.
edit: Can't tell if back of my head is flat, one side seems to have less of a bump at the bottum than other though.
01-23-2011, 01:19 PM
By a bump at the bottom are you talking about behind and below your ears? We all have a bulge back there on each side- it's the mastoid bone- it's part of the base of your skull- which side is bigger?
I forgot to mention before- many people have what's called a skull base shift- again it's from in utero position and it's not harmful but it can make a person a bit asymmetrical.
01-23-2011, 01:24 PM
Im not sure what I mean. When I place my palm on the crown of my head and run it down the back of my skull, both seem decently shaped but one side seems less formed and a bit flatter. Not by very much though could be nothing.
01-23-2011, 01:32 PM
That sounds like plagio to me- I am sorry about your headaches and you really should push for a specialist on that because headaches could be serious but probably not related to your head shape. I don't know your situation but there are lots of ways to get insuance- most peole have it through work(sometimes even a part time job), you can also get it if you are a full time student- most schools have a school program. You can also get it through your parents until you are 25 I believe. There are also private insurers depending on where you live- they can be expensive but if you could afford it for a few months maybe it would help pay for diagnosis of your issues. It's really important to have insurance even when you are young- what if you get seriously hurt or sick- you don't want to end up with tens of thousands in medical bills... Good luck and keep us posted as you move forward...
01-23-2011, 03:44 PM
I think your SIL better get her eyes checked. Your head looks perfectly fine. In one pic one cheek may have looked a bit puffier. Do you have any teeth that need worked on cuz that could cause that.
01-23-2011, 04:21 PM
I completely agree with Monty. You look great to me! :) Kind of baffled as to why your SIL would say something that harmful, when there is no basis in it other than her opinion. Do you guys get on well?? Could she just be trying to get under your skin?
We all have something we dont like about our bodies and tend to zero in on that, even though other people think nothing of it :) With me, it's my nose. Hate it!! and in my mind, I used to think people were staring at it. Turned out they werent LOL...
If nothing else, but to reassure yourself, maybe see a craniofacial specialist when you get insurance
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