my story about my bi coronal

[mary_vance]

at birth my mom noticed that something wasn't right with my head. the doctors told her at first that it was due to my birth by c-section. at 2 months of age i was diagnosed with bi coronal on the right. i had surgery at 6 months of age. my head was completely shaved. i have a zig zag scar that extends from ear to ear. after spending 9 days in the hospital in icu i was released. my mom then had to squeeze my head round. she told me that i sounded like she was cracking her knuckles. when she did this, it caused me to have migraines.

i am now 29 years old. i have a child of my own now and he was not born with cranio. the only lasting effects that i have now are chronic migraines. i only had 1 surgery for it. when i was 16 years old my doctor's started to talk to my parents about some more possible cosmetic surgery to correct the right side of my forehead which has an indentation. after 2 years of braces, i had finally reached 18 and the decision for further plastic surgery was totally in my hands. i sat down with my parents and the team of doctors and surgeons and started asking questions on my own. i wanted to know if there was a medical reason for this surgery. after a long debate with the doctors they finally broke down and told me that the surgery was not medically necessary that it was strictly cosmetic. that is when i burst in to tears and told them that they had not been the one to look in the mirror everyday and see the indentation. i opted out of the surgery.

when you spend your entire looking in the mirror and seeing one thing and you have people trying to change you can be really difficult. i am who i am. i am an adult with cranio and i am proud to say that. i have the attitude that if you dont like what you see when you look at me then look the other way.

i hope that every child with cranio can have that same attitude when they get older. we aren't any different than everyone else. we just look a little different. i love who i am and no one will change that.

god bless everyone on here!!! i love you all!!:grouphug

Mary Vance
29 Hilliard, Oh

[Jenny]

Thanks for sharing your story, Mary. I am also 29 with bicoronal cranio. For me, i have pinched temples and a rough forehead, but most people don't even notice. I've been lucky to be blessed to be with people who love me the way I am.

I also have three kids. My first born was also born with bicoronal cranio. She had one surgery and looks great. She followed up with helmet therapy. She's the one in my avi on the left.

[kfa329]

Thanks for sharing! I found your story particularly interesting because my husband has right coronal and never had surgery. I would be particularly interested in hearing more about how your mom had to squeeze your head. Sorry to hear about the chronic migraines but you look great and I don't think anyone now would suspect that you ever had cranio!

[mary_vance]

thanks kelli. im not real sure how she did it. she has told me that she had to put me between her knees with my arms draped over her legs and did it that way. i will have to have a talk with her and find out the details about it and update you as i find out more. i seriously dont know how she found the strength to do that while i was screaming in pain.

you are all a fabulous group of extremely strong women! huge kudos to all of you for being such wonderful mommies!! i love you all!

[Trish]

I just wanted to say Welcome and I can't wait to get the chance to know you better.

[monty]

I don't know how I missed this thread.

Wow you are amazingly strong!

I can't see it in your photos though for what it's worth.

Would you feel the same if you lost your hair do you think?

[tarajames]

I know this post is really old, but Thank You so much.
We have always been really proud of my 14yr olds choice not to have cosmetic or aesthetic surgery, but after coming on this site I started to worry we were setting him up for a lifetime of depression and anger. I'm glad to see someone like him that accepts themselves and has that who cares what you think attitude. I wish I was a little more like him and you.